Continued from previous entry of Pepaw's Christmas wish - part 3 …
That little Christmas tree lit up Pepaw's room and my heart. This was THE moment I had been waiting and praying for the last three weeks. I was so pleased with myself that I had gotten Pepaw exactly what he wanted for Christmas. I waited for him to give me that special smile that would help erase some of the wounds that this damn Alzheimer's disease had inflicted upon all of us this year.
“Look,” Roger and I said almost together.
“Okay, you gonna get me out of here?”
There was no smile, no glimmering in his eyes, no recognition of this gift. He had only one focus, one mission: to leave, even though he had no specific destination.
Roger repeated the earlier part of the conversation, “I can’t today. I don’t have my car.”
“Get me out of here. I’ve had enough of this stuff.” He wasn't angry or shouting.
I had to try to redirect him again. I asked about dinner, and he said the meat was so stiff he couldn’t stick his fork into it. He demonstrated how he had to cut it with a knife. Then he crammed everything on his chair into the bag of his new gifts. He’s had those toiletries packed since the day we moved him in.
“All that stuff can go in there,” he said.
I gently touched his moving arm and said, “That’s for you.”
Uninterested, he pointed to another baseball cap. “This is not a Christmas gift here.”
I tried to direct his attention to the tree. I was unsuccessful.
“You think we can do that?” he asked. I knew he was back on the leaving track again.
“I can’t do that today,” Roger said again.
Pepaw suddenly recited the names of his four other children and the state where the three girls all resided. Roger acknowledged that.
Immediately, Pepaw said again, “You gonna get me out of here?”
I had to step in.
“Let’s go walking.” I gestured for Roger to lead him out of his room and into the hall. “You and Roger are going for a walk.” I reassured him that his packed toiletries would still be there and ready to go. I followed the father and son as they ventured out side-by-side.
“This is my son, Roger,” Pepaw told the first staff member they met in the hall. “He’s going to get me out of here.”
“He is? Okay. Did you share your candy with him?” she asked.
“Yeah, I shared the candy with him. You got anything to share with me?”
“Not right now, but I’ll get you some cookies later,” she said.
“I won’t be here. We’re leaving.”
“Well, I’ll save you some just in case.” She nodded and smiled.
“We’ll have to find out how to get out of here.” He told another staff member, “He’s my son. He’s going to get me out of here.”
Roger's frustration was obvious to me though he spoke very calmly. “Dad, I can’t do it right now. I’ve got to find my car.”
I knew this was not working. I had to step in again.
My husband stopped, and I gestured for him to back away. I knew we had to get Pepaw on a whole new track, and sadly, it wasn't going to happen while Roger was standing there. I whispered to the staff person that we had gotten the Gunsmoke DVDs, and she tried to entice Pepaw with that.
“I like Walker,” he said.
I reassured him, “We’re getting some more Walker for you.”
“I want to get out of here.”
I stepped next to him. “We’ll watch Walker until Roger finds the car.”
“My son’s gone to get his car.”
I told the staffer about his Christmas tree as we slowly redirected Pepaw to the TV room.
“Where’s his car parked at?” Pepaw asked again.
“I’m not sure," I said. "Show her your Christmas tree.”
The woman did the appropriate oohs and aahs when we entered his room. I showed her how to turn it off, and she told Pepaw, “I like that tree.”
“My son put that there.”
I pointed to the chair. “Do you want to show her your Christmas?”
“I ain’t worried about that.”
I had to encourage him to leave his stuff in his room until Roger found his car.
“I need to get out of here.”
We escorted him to the lounge where she put in the Gunsmoke DVD. I pulled up a chair so he had a front row seat. I urged him to stay and watch to make sure the DVD worked.
“Let’s get out of here.”
I kneeled next to him and kept my eyes focused on his. “Roger’s looking for the car. Let’s wait here until he’s ready. You wait here until I get back.”
“Tell him to come and get me.”
“I will.”
I fought the tears as I kissed his cheek. I knew we needed to leave him for his own good. He would be safe, comfortable and loved here.
“I'll see you in a little bit. I love you.”
Now he was fixated on John Wayne introducing the premiere episode of Gunsmoke. That was okay as I quietly walked away to find my husband waiting by the front desk. Checking back later, we were relieved to hear that Pepaw said Roger must have found his car and left, but would return the following day.
An intense sadness swept me, but I didn't want to explain it to Roger. I was too tired to cry. However, I didn't fully understand it myself until after I had finished stumbling through the holidays.
I had made the mistake of putting all my emotional energy into making Pepaw’s Christmas wish come true with that tree, even though I should have known he wouldn't remember our conversation or his request. I had made it MY job to remember it for him. I had made his wish MY own. How foolish I was to let Alzheimer's ruin it for ME. It was a reminder that we can only truly give without expectations of acceptance, even though that's a delicate emotion that makes us very human.
I learned that I was just as naïve as a child who is devastated when they don’t get THE only gift they really wanted for Christmas … It was a reminder that sometimes the most precious gifts don't come all wrapped up in pretty paper and bows or handy bags.
And I fully comprehend now that the only real gift I can wish for him is release from this horrific disease, from the pain of his endless captivity, from a world that makes no sense and frustrates him. Unfortunately, I can't give that to him, only God can. Until God is ready to give Pepaw his freedom, I must keep him physically comfortable and pain-free and be ready to redirect him and offer a new level of patience that truly challenges me.
And love, lots of love.
For now, Pepaw and I are so grateful for at least one thing: Walker, Texas Ranger. Hey man, you've saved us in more ways than you can ever imagine!
Thursday, December 30, 2010
Wednesday, December 29, 2010
Pepaw's Christmas wish - part 3
Continued from previous posting about Pepaw's Christmas wish part 2 …
Roger and I walked his dad down the hallway to his room. We had opted for the more expensive, yet necessary, single room for Pepaw because he had gotten into a fist fight with his first roommate over whether their door should be open or closed. (Pepaw wanted it closed.) It had sent the roomie to the hospital to make sure he wasn't seriously injured, which thankfully he wasn't.
It also sent Pepaw to the mental health floor of the hospital for a second time to get his rage under control. Within a few days of moving into the secure Alzheimer's facility, he had earned his first trip to the hospital after going on a rampage, throwing things, including his prized bowling balls, and ripping the towel bar off the wall and swinging it above his head as he terrified other residents and challenged the staff as he ranted in the hallways. He was desperate to get out and even knocked out the screened window in his room and escaped outside where he told the staff he was waiting for his son to pick him up.
That memory still breaks my heart even at this moment, as does the time I sat with him in the hospital and reassured him that he'd be able to go home soon.
We had few options. No words or kindnesses or hugs or diversions or truths or lies or even Walker, Texas Ranger could calm him. He could not understand how we were trying to protect him, and he certainly couldn't comprehend that he had Alzheimer's or what it even was. We hated to do it, but we had to rely on some medication to stem the rage. It didn't take much, but it calmed him to the Pepaw I had come to know and love.
Thankfully he was able to return to this Alzheimer's facility and has adjusted pretty well since then. I have also come to love the staff because they take such good care of Pepaw and understand his little quirks and questions, especially, "Got any candy?" or "Is Walker on TV?" God love him and them …
As we entered Pepaw's room on this cold December night, I noticed his packed suitcase was still by the door. Nothing had changed. He was always ready to go though had not asked for almost two months to leave. Ah, good also, that he hadn't again packed up all the family photos we had arranged on a table for him. That was very good.
Roger moved some of the photos aside to make room for the Christmas tree. He focused on that while I tried to engage Pepaw in the holiday spirit.
“We brought you a couple of things.”
Instead, he looked up at the clock on the wall.
“It’s 15 minutes until 7 o’clock. I already got a bunch of junk here.”
He pointed to his chair. I opened a little ripped package, which contained a fleece scarf.
“That’s nice,” I said, making eye contact. “That’ll be warm.”
He had received a packet of letters from the students in his daughter Lora’s classroom.
I said, “Wow, that’s nice! Did you read them?”
He recited the address, his address, on the big envelope. “I read the whole thing.” I don't think he understood my question, but it was all right.
I handed him a bag with the flannel shirt and Gunsmoke DVDs. “That’s for you. That’s your Christmas.”
Pepaw promptly set it down in the chair.
“I was just fixin’ to tell Roger I want to go with him and get out of here right now.”
“We’ll see what we can do,” my husband answered patiently.
“I want to get out of here right now if you’ll take me, okay?”
“I don’t have my car here,” Roger said. Well, he wasn’t lying. We had driven mine.
Pepaw looked at me. “You gonna take me over to her house?”
“Maybe a little later,” Roger said.
I changed the subject. “You said you wanted a little Christmas tree, so I brought you one!”
Roger showed him the tree and turned on the lights. To me, it was the most beautiful tree I had seen all year as the brilliant colors illuminated the darkened corner of the room. This, this will engage Pepaw. I waited for his smile …
To be continued
Roger and I walked his dad down the hallway to his room. We had opted for the more expensive, yet necessary, single room for Pepaw because he had gotten into a fist fight with his first roommate over whether their door should be open or closed. (Pepaw wanted it closed.) It had sent the roomie to the hospital to make sure he wasn't seriously injured, which thankfully he wasn't.
It also sent Pepaw to the mental health floor of the hospital for a second time to get his rage under control. Within a few days of moving into the secure Alzheimer's facility, he had earned his first trip to the hospital after going on a rampage, throwing things, including his prized bowling balls, and ripping the towel bar off the wall and swinging it above his head as he terrified other residents and challenged the staff as he ranted in the hallways. He was desperate to get out and even knocked out the screened window in his room and escaped outside where he told the staff he was waiting for his son to pick him up.
That memory still breaks my heart even at this moment, as does the time I sat with him in the hospital and reassured him that he'd be able to go home soon.
We had few options. No words or kindnesses or hugs or diversions or truths or lies or even Walker, Texas Ranger could calm him. He could not understand how we were trying to protect him, and he certainly couldn't comprehend that he had Alzheimer's or what it even was. We hated to do it, but we had to rely on some medication to stem the rage. It didn't take much, but it calmed him to the Pepaw I had come to know and love.
Thankfully he was able to return to this Alzheimer's facility and has adjusted pretty well since then. I have also come to love the staff because they take such good care of Pepaw and understand his little quirks and questions, especially, "Got any candy?" or "Is Walker on TV?" God love him and them …
As we entered Pepaw's room on this cold December night, I noticed his packed suitcase was still by the door. Nothing had changed. He was always ready to go though had not asked for almost two months to leave. Ah, good also, that he hadn't again packed up all the family photos we had arranged on a table for him. That was very good.
Roger moved some of the photos aside to make room for the Christmas tree. He focused on that while I tried to engage Pepaw in the holiday spirit.
“We brought you a couple of things.”
Instead, he looked up at the clock on the wall.
“It’s 15 minutes until 7 o’clock. I already got a bunch of junk here.”
He pointed to his chair. I opened a little ripped package, which contained a fleece scarf.
“That’s nice,” I said, making eye contact. “That’ll be warm.”
He had received a packet of letters from the students in his daughter Lora’s classroom.
I said, “Wow, that’s nice! Did you read them?”
He recited the address, his address, on the big envelope. “I read the whole thing.” I don't think he understood my question, but it was all right.
I handed him a bag with the flannel shirt and Gunsmoke DVDs. “That’s for you. That’s your Christmas.”
Pepaw promptly set it down in the chair.
“I was just fixin’ to tell Roger I want to go with him and get out of here right now.”
“We’ll see what we can do,” my husband answered patiently.
“I want to get out of here right now if you’ll take me, okay?”
“I don’t have my car here,” Roger said. Well, he wasn’t lying. We had driven mine.
Pepaw looked at me. “You gonna take me over to her house?”
“Maybe a little later,” Roger said.
I changed the subject. “You said you wanted a little Christmas tree, so I brought you one!”
Roger showed him the tree and turned on the lights. To me, it was the most beautiful tree I had seen all year as the brilliant colors illuminated the darkened corner of the room. This, this will engage Pepaw. I waited for his smile …
To be continued
Tuesday, December 28, 2010
Pepaw's Christmas wish - part 2
Continued from previous post about Pepaw's Christmas wish …
The day after Pepaw's doctor visit and proclamation that he only wanted a tree with lights as a Christmas gift, I found my dad-in-law a perfect little tree and purchased pint-sized ornaments to go with it. I also found a battery-operated string of lights, which was the safest for him. I shared these with my husband, Roger, and he agreed they would do the job.
So I eagerly looked forward to seeing Pepaw's face when we would deliver that little tree. Our schedules and the weather worked out to make the drive three days before Christmas. On our way, we stopped at a place that had advertised DVD seasons of “Walker, Texas Ranger,” but they were sold out. We settled for the first season of “Gunsmoke” to entertain him. The Alzheimer's residence staff said he watched the first season of Walker constantly when he wasn't “riding the rails.” We needed something that would force him to sit for a while.
Why? Because it seemed like he was literally walking himself to death. No wonder we couldn't keep weight on him as we struggled to keep him above 125 pounds. He had always been skinny, but this was too much so. Plus he refused to participate in any activities with other residents though the staff had tried its best to involve him. It wasn't that he was being anti-social, because he was so doggone polite and kind when you talked to him, but he never was a social butterfly. It was just, well, Pepaw continuing to control his own destiny as best as he could, as he always had.
Pepaw, like many individuals with Alzheimer's, was consumed with moving all the time. He could be found walking the hallways non-stop and compulsively touching all the handrails along the way; hence the term, “riding the rails.” Whenever I visited, I knew I'd have to wander the hallways in search of him. When I found him, sometimes we'd just keep walking. I did whatever he wanted to do because I knew I could only engage him on his terms.
I had to learn to accept this obsessive behavior because it was HIS way of coping with what was happening to him. He didn't understand that his brain didn't work “right” anymore, but he became consumed by time. Time. Every minute. Every hour. He had to “kill” time from the time he got up in the morning until he went to bed at night. This had been his pattern since July, now only more intensified.
I remembered the endless calls he made to me when he was at the assisted living facility. I recalled one message I had sent one of my sisters-in-law in early August, a week before we had moved him to this secure facility:
So far your dad has tried calling 6 times this morning, and I was able to answer two of them. First at 7 or so asking “please come help me kill time.” I said I'd be there this afternoon but he kept insisting. I said I'd see him later, nothing I could do about it. Then he called about 8:15 asking the same thing, telling me how “terrible things were happening.” I asked him to be specific, knowing he wouldn't be, but hey, had to at least try. And the day is still young …
During several of my visits to this Alzheimer's facility where he had resided since mid-August, he described how long it had taken him to walk one walkway and how much time would pass on the big clock in the lobby. One time he even got up to demonstrate. So I just sat in his chair and awaited his return, watching him kill time, even when it broke my heart and tear ducts. However, he was safe here. At least I could sleep at night, not worrying if he was out wandering or in danger of getting hit by a car or being taken advantage of by a stranger …
With “Gunsmoke” and a new flannel shirt in one bag and the miniature tree and accessories in another, Roger and I arrived to celebrate Christmas with Pepaw that Wednesday evening before the official holiday. The staff welcomed us as always, and I said we knew where to look for him. They smiled. They all knew his routine, too. I felt like a little kid on Christmas morning as we turned the first corner and ran into him as his hand followed the rails.
“Hi there!” I smiled and held up one of the bags. He looked at me and said hi. He looked at Roger for several seconds. I wondered if this would be the time that father would not recognize son. I was prepared, but I wasn't sure if Roger was. He still knew me as Monica and that I hung around with Roger, but he had forgotten that I was his daughter-in-law. What will be will be …
Good, Pepaw knew his oldest child.
“You gonna get me out of here?” he asked. That was what he still needed his son for.
I immediately changed the subject, much to Roger's relief.
“We've got your Christmas here! You wanted a tree.” I kept my smile ablaze.
“Huh?”
“You wanted a Christmas tree.”
“A Christmas tree,” Roger repeated. “Can we put it in your room? We’ve got lights for it, too.”
He looked confused as we directed him back down the hallway.
“How am I going to get back out of here? I need to get out of here and over to the other place.” We didn’t ask where this was, but we reassured him we’d walk with him again …
To be continued.
The day after Pepaw's doctor visit and proclamation that he only wanted a tree with lights as a Christmas gift, I found my dad-in-law a perfect little tree and purchased pint-sized ornaments to go with it. I also found a battery-operated string of lights, which was the safest for him. I shared these with my husband, Roger, and he agreed they would do the job.
So I eagerly looked forward to seeing Pepaw's face when we would deliver that little tree. Our schedules and the weather worked out to make the drive three days before Christmas. On our way, we stopped at a place that had advertised DVD seasons of “Walker, Texas Ranger,” but they were sold out. We settled for the first season of “Gunsmoke” to entertain him. The Alzheimer's residence staff said he watched the first season of Walker constantly when he wasn't “riding the rails.” We needed something that would force him to sit for a while.
Why? Because it seemed like he was literally walking himself to death. No wonder we couldn't keep weight on him as we struggled to keep him above 125 pounds. He had always been skinny, but this was too much so. Plus he refused to participate in any activities with other residents though the staff had tried its best to involve him. It wasn't that he was being anti-social, because he was so doggone polite and kind when you talked to him, but he never was a social butterfly. It was just, well, Pepaw continuing to control his own destiny as best as he could, as he always had.
Pepaw, like many individuals with Alzheimer's, was consumed with moving all the time. He could be found walking the hallways non-stop and compulsively touching all the handrails along the way; hence the term, “riding the rails.” Whenever I visited, I knew I'd have to wander the hallways in search of him. When I found him, sometimes we'd just keep walking. I did whatever he wanted to do because I knew I could only engage him on his terms.
I had to learn to accept this obsessive behavior because it was HIS way of coping with what was happening to him. He didn't understand that his brain didn't work “right” anymore, but he became consumed by time. Time. Every minute. Every hour. He had to “kill” time from the time he got up in the morning until he went to bed at night. This had been his pattern since July, now only more intensified.
I remembered the endless calls he made to me when he was at the assisted living facility. I recalled one message I had sent one of my sisters-in-law in early August, a week before we had moved him to this secure facility:
So far your dad has tried calling 6 times this morning, and I was able to answer two of them. First at 7 or so asking “please come help me kill time.” I said I'd be there this afternoon but he kept insisting. I said I'd see him later, nothing I could do about it. Then he called about 8:15 asking the same thing, telling me how “terrible things were happening.” I asked him to be specific, knowing he wouldn't be, but hey, had to at least try. And the day is still young …
During several of my visits to this Alzheimer's facility where he had resided since mid-August, he described how long it had taken him to walk one walkway and how much time would pass on the big clock in the lobby. One time he even got up to demonstrate. So I just sat in his chair and awaited his return, watching him kill time, even when it broke my heart and tear ducts. However, he was safe here. At least I could sleep at night, not worrying if he was out wandering or in danger of getting hit by a car or being taken advantage of by a stranger …
With “Gunsmoke” and a new flannel shirt in one bag and the miniature tree and accessories in another, Roger and I arrived to celebrate Christmas with Pepaw that Wednesday evening before the official holiday. The staff welcomed us as always, and I said we knew where to look for him. They smiled. They all knew his routine, too. I felt like a little kid on Christmas morning as we turned the first corner and ran into him as his hand followed the rails.
“Hi there!” I smiled and held up one of the bags. He looked at me and said hi. He looked at Roger for several seconds. I wondered if this would be the time that father would not recognize son. I was prepared, but I wasn't sure if Roger was. He still knew me as Monica and that I hung around with Roger, but he had forgotten that I was his daughter-in-law. What will be will be …
Good, Pepaw knew his oldest child.
“You gonna get me out of here?” he asked. That was what he still needed his son for.
I immediately changed the subject, much to Roger's relief.
“We've got your Christmas here! You wanted a tree.” I kept my smile ablaze.
“Huh?”
“You wanted a Christmas tree.”
“A Christmas tree,” Roger repeated. “Can we put it in your room? We’ve got lights for it, too.”
He looked confused as we directed him back down the hallway.
“How am I going to get back out of here? I need to get out of here and over to the other place.” We didn’t ask where this was, but we reassured him we’d walk with him again …
To be continued.
Monday, December 27, 2010
Pepaw's Christmas wish - part 1
On the first Sunday of December, I sat with my dad-in-law, Pepaw, in the waiting room of the after-hours hospital clinic. He had worn his dentures too long, and that caused what looked like an infection on his upper gum. However, he didn't complain about pain until it had gotten bad that afternoon. Hence, the Sunday evening visit to the doctor. I couldn't bear to think of him enduring a night of pain.
That's what Alzheimer's does to you and your loved ones: pains or injuries that you can't see and suddenly your loved one doesn't know how to describe or acknowledge.
Have I mentioned before how much I hate Alzheimer's? How it's destroying Pepaw's brain and body? How many times I've cried this year? How many difficult discussions my husband and I have shared about his father? How I've mastered anger and calm simultaneously?
It simply sucks.
I consider myself blessed that I had written a book about coping with Alzheimer's before Pepaw was diagnosed with it this spring. I knew what to expect, the highs, the lows, etc. I guess that's why God pushed me through the door at the Central Illinois Chapter of the Alzheimer's Association in the fall of 2006 to write on a tragic topic about which I knew little, but about which much would be demanded of me in the future.
And now I have Pepaw.
I got up when the receptionist at the clinic signaled she had some more questions for me. I told Pepaw I'd be right back, that I'd only be walking across the room. I filled out more paperwork as his healthcare power of attorney. I turned and he was standing behind me, just inches away. Though he had startled me, he also made me smile. Beneath his baseball cap, his eyes were big as he asked, "Where's the doctor?"
I walked him back to the chairs and explained that the doctor had other patients ahead of us but that he knew we were there. We sat for about a minute.
"Where's the doctor?"
"Should only be a few more minutes."
Thankfully it was, as a nurse led us down the hallway and I quickly whispered that he had Alzheimer's and was hard of hearing. We helped him remove his new coat, which he needed up here in the cold north after living 18 years in Florida. The scale revealed that he wasn't gaining any weight even though he really needed to. How do we fatten up a scrawny little Pepaw, I wondered to myself again.
Inside the examination room, I answered the nurse's questions and then the wait began again.
"Where's the doctor?"
"He has a few more patients to see. They got here before we did."
"Oh."
The clock ticked …
"Shouldn't that doctor be here by now?"
"The nurse said it should only be a few more minutes."
"Oh."
I listened to the clock tick and the repeat of the above exchange at least 10 times.
The clock ticked again …
"Where is the doctor?"
I needed a more creative answer to keep myself entertained and from becoming testy. This one sounded good.
"Shh," I said. "I think they're right outside the door. I thought I heard footsteps. I think they're reading your chart on the door outside so they know how to help you."
The clock ticked …
"Where is the doctor?"
"I think I hear them coming." I patted his arm reassuringly.
His repetition had become more pronounced in recent months, though he didn't sound impatient. He had just forgotten that he had already inquired. It was up to me to change the subject.
"Hey, it's almost Christmas. After Thanksgiving, Christmas isn't far behind."
He seemed surprised to hear that Christmas was so near and simply nodded.
"Yes," I said, "it's December. What would you like for Christmas?"
He looked at me for a moment and said, "A little tree with lights. That's all. Don't need nothing else."
His simple answer pummeled my tear ducts. My eyes instantly filled, and my heart rattled with the echo of his decisive words. It saddened me so deeply and made me hate this damn disease even more. I put my hand on his and forced my wavering voice to respond.
"Well, I think we can make that possible …"
The female physician then entered. I reassured Pepaw that she was a doctor and would take good care of him. And she did …
As we left the clinic, I had to help him zip his coat, just like I did for my son when he was a little boy. It felt good to be needed as I told Pepaw to bundle up good because it was cold outside. He thanked me. I wanted nothing more than to take him home with me, to decorate and light up a little tree just for him, to see the bright colors reflect in his eyes, to see him smile and let him watch DVDs of his beloved "Walker, Texas Ranger" for as long as he wanted, forever, if I could …
When I stopped the car in the drive, he asked if we were "back home." Yep, I told him.
"Let's go inside where it's warm. It's almost time for bed."
This was Pepaw's home since late August, a secure Alzheimer's facility. It killed me to be more than hour from him, but it was for his own safety and for others that we made the difficult decision to place him in a special residence, which had an opening at the exact moment we needed it. Here he could not wander off … or set off the smoke alarm in his room by stealing matches and smoking … or threaten people with God's wrath and his mighty fist that he nearly threw at me a couple of times.
As I ushered him inside, we were greeted by one of the staff members who welcomed him with a smile and asked how he was doing. He said fine. I needed to run to the pharmacy and pick up his prescriptions. I told him I would be back and kissed his whiskered cheek.
"I love you," I said. He would likely be in bed by the time I returned. They would make sure he got his medicine.
"I love you."
On the drive home in the December darkness, I made my plans to make sure Pepaw got his Christmas wish …
To be continued.
That's what Alzheimer's does to you and your loved ones: pains or injuries that you can't see and suddenly your loved one doesn't know how to describe or acknowledge.
Have I mentioned before how much I hate Alzheimer's? How it's destroying Pepaw's brain and body? How many times I've cried this year? How many difficult discussions my husband and I have shared about his father? How I've mastered anger and calm simultaneously?
It simply sucks.
I consider myself blessed that I had written a book about coping with Alzheimer's before Pepaw was diagnosed with it this spring. I knew what to expect, the highs, the lows, etc. I guess that's why God pushed me through the door at the Central Illinois Chapter of the Alzheimer's Association in the fall of 2006 to write on a tragic topic about which I knew little, but about which much would be demanded of me in the future.
And now I have Pepaw.
I got up when the receptionist at the clinic signaled she had some more questions for me. I told Pepaw I'd be right back, that I'd only be walking across the room. I filled out more paperwork as his healthcare power of attorney. I turned and he was standing behind me, just inches away. Though he had startled me, he also made me smile. Beneath his baseball cap, his eyes were big as he asked, "Where's the doctor?"
I walked him back to the chairs and explained that the doctor had other patients ahead of us but that he knew we were there. We sat for about a minute.
"Where's the doctor?"
"Should only be a few more minutes."
Thankfully it was, as a nurse led us down the hallway and I quickly whispered that he had Alzheimer's and was hard of hearing. We helped him remove his new coat, which he needed up here in the cold north after living 18 years in Florida. The scale revealed that he wasn't gaining any weight even though he really needed to. How do we fatten up a scrawny little Pepaw, I wondered to myself again.
Inside the examination room, I answered the nurse's questions and then the wait began again.
"Where's the doctor?"
"He has a few more patients to see. They got here before we did."
"Oh."
The clock ticked …
"Shouldn't that doctor be here by now?"
"The nurse said it should only be a few more minutes."
"Oh."
I listened to the clock tick and the repeat of the above exchange at least 10 times.
The clock ticked again …
"Where is the doctor?"
I needed a more creative answer to keep myself entertained and from becoming testy. This one sounded good.
"Shh," I said. "I think they're right outside the door. I thought I heard footsteps. I think they're reading your chart on the door outside so they know how to help you."
The clock ticked …
"Where is the doctor?"
"I think I hear them coming." I patted his arm reassuringly.
His repetition had become more pronounced in recent months, though he didn't sound impatient. He had just forgotten that he had already inquired. It was up to me to change the subject.
"Hey, it's almost Christmas. After Thanksgiving, Christmas isn't far behind."
He seemed surprised to hear that Christmas was so near and simply nodded.
"Yes," I said, "it's December. What would you like for Christmas?"
He looked at me for a moment and said, "A little tree with lights. That's all. Don't need nothing else."
His simple answer pummeled my tear ducts. My eyes instantly filled, and my heart rattled with the echo of his decisive words. It saddened me so deeply and made me hate this damn disease even more. I put my hand on his and forced my wavering voice to respond.
"Well, I think we can make that possible …"
The female physician then entered. I reassured Pepaw that she was a doctor and would take good care of him. And she did …
As we left the clinic, I had to help him zip his coat, just like I did for my son when he was a little boy. It felt good to be needed as I told Pepaw to bundle up good because it was cold outside. He thanked me. I wanted nothing more than to take him home with me, to decorate and light up a little tree just for him, to see the bright colors reflect in his eyes, to see him smile and let him watch DVDs of his beloved "Walker, Texas Ranger" for as long as he wanted, forever, if I could …
When I stopped the car in the drive, he asked if we were "back home." Yep, I told him.
"Let's go inside where it's warm. It's almost time for bed."
This was Pepaw's home since late August, a secure Alzheimer's facility. It killed me to be more than hour from him, but it was for his own safety and for others that we made the difficult decision to place him in a special residence, which had an opening at the exact moment we needed it. Here he could not wander off … or set off the smoke alarm in his room by stealing matches and smoking … or threaten people with God's wrath and his mighty fist that he nearly threw at me a couple of times.
As I ushered him inside, we were greeted by one of the staff members who welcomed him with a smile and asked how he was doing. He said fine. I needed to run to the pharmacy and pick up his prescriptions. I told him I would be back and kissed his whiskered cheek.
"I love you," I said. He would likely be in bed by the time I returned. They would make sure he got his medicine.
"I love you."
On the drive home in the December darkness, I made my plans to make sure Pepaw got his Christmas wish …
To be continued.
Thursday, September 23, 2010
The pain of Pepaw's descent into Alzheimer's — part 1
A note to my dear friend, Molly, an Alzheimer's caregiver who passed away unexpectedly in January. I always shared moments like this with her. It's a habit that's hard to break …
Dear Molly,
You know it's been a while since I've written about Pepaw. Well, from your front row seat in heaven, you know I've taken on more than I expected with caring for my dad-in-law and his Alzheimer's. How I wish you were here to talk to me, though I know you are listening.
Remember, I'm still human.
But dammit, that's just not enough for ME! Some days I am so selfish that I want you right here on the other end of the phone or offering me ice water when the sun or internal turmoil and pain set me ablaze. But I quickly acknowledge I'd never want you to go through all that earthly pain again.
I'm human.
I've discovered a new intense love for and relationship with those individuals who have stepped forward to help. I've learned to stand alongside those who need help adjusting to Pepaw's painful journey, his hell on earth. I've also developed an unexpected and uncomfortable hardness toward and indescribable disappointment in those who have let me and Pepaw down. Some days I wonder how those people can even live with themselves.
I'm human.
It's been barely five months since we brought Pepaw to Illinois from Florida, yet some days it feels like five years … other times, 500. It's been a tragedy to watch his rapid decline, which has presented unique and painful physical, emotional and financial challenges. I guess I've been unable to write about my dad-in-law recently because I'm still absorbing it all, trying to make sense of a damn disease that makes no sense. It is so infuriating and heartbreaking! Some days I give up reaching for tissues, opting to not waste them and instead saturate my T-shirt sleeves.
I'm only human.
During mid-to-late July, I learned to live with my phone, not knowing what Pepaw would do next at his assisted living facility. I'd get a call about his smoking or his proclamations that this residence was hell, that there was no place more evil than it. I'd learn of how he had a direct line to God, who promised Pepaw that He would destroy this nasty, nasty place. Unfortunately, some of the other residents who heard his tirades became justifiably frightened at his ravings.
And so it continues … tomorrow.
Dear Molly,
You know it's been a while since I've written about Pepaw. Well, from your front row seat in heaven, you know I've taken on more than I expected with caring for my dad-in-law and his Alzheimer's. How I wish you were here to talk to me, though I know you are listening.
Remember, I'm still human.
But dammit, that's just not enough for ME! Some days I am so selfish that I want you right here on the other end of the phone or offering me ice water when the sun or internal turmoil and pain set me ablaze. But I quickly acknowledge I'd never want you to go through all that earthly pain again.
I'm human.
I've discovered a new intense love for and relationship with those individuals who have stepped forward to help. I've learned to stand alongside those who need help adjusting to Pepaw's painful journey, his hell on earth. I've also developed an unexpected and uncomfortable hardness toward and indescribable disappointment in those who have let me and Pepaw down. Some days I wonder how those people can even live with themselves.
I'm human.
It's been barely five months since we brought Pepaw to Illinois from Florida, yet some days it feels like five years … other times, 500. It's been a tragedy to watch his rapid decline, which has presented unique and painful physical, emotional and financial challenges. I guess I've been unable to write about my dad-in-law recently because I'm still absorbing it all, trying to make sense of a damn disease that makes no sense. It is so infuriating and heartbreaking! Some days I give up reaching for tissues, opting to not waste them and instead saturate my T-shirt sleeves.
I'm only human.
During mid-to-late July, I learned to live with my phone, not knowing what Pepaw would do next at his assisted living facility. I'd get a call about his smoking or his proclamations that this residence was hell, that there was no place more evil than it. I'd learn of how he had a direct line to God, who promised Pepaw that He would destroy this nasty, nasty place. Unfortunately, some of the other residents who heard his tirades became justifiably frightened at his ravings.
And so it continues … tomorrow.
Saturday, September 4, 2010
For sale: an old man's truck and his dreams
For sale: 2006 GMC Canyon truck, one owner, under 30,000 miles, air, white, basic model …
What else should I add to the description as we search for a buyer for my dad-in-law's beloved truck? In Florida, Pepaw steered it to a relative's where he arrived uninvited day after day and fell asleep in the living room …
Once he scared a passenger, one of his daughters, so much that she scribbled all her emergency contact information in case of an accident …
Oh, and he never forgot the route to the store where he shoplifted over-the-counter sleeping pills so he could take five or six a night. A night. Yep, we found a lot of those little blue tablets in his kitchen cabinet in April when we moved him and his truck here to Illinois …
He thinks he drove the truck loaded with his basic possessions here, but his oldest son, my husband, was at the wheel every mile cross-country as I followed them in our van also filled with his belongings.
This is the truck Pepaw has accused us of stealing. This is the vehicle that he was sure was our one-way ticket to prison and his one-way ticket to freedom in Tennessee where he would be welcomed by his daddy, aunts and uncles, and siblings, and work at his daddy's service station …
What else should I include? Unfortunately, he did smoke in it, but we've gotten rid of most of the stench. However, overall he took pretty good care of it.
Pepaw loves that truck and wants nothing more in the world but to drive it to the bowling alley or to the lake for fishing … or wherever his dreams may take him. That's all this 84-year-old man craves … and to get away from all these evil people who are ruining his life and putting him through hell.
Just one more thing to add to the want ad:
Must sell to help pay cost of owner's Alzheimer's care.
What else should I add to the description as we search for a buyer for my dad-in-law's beloved truck? In Florida, Pepaw steered it to a relative's where he arrived uninvited day after day and fell asleep in the living room …
Once he scared a passenger, one of his daughters, so much that she scribbled all her emergency contact information in case of an accident …
Oh, and he never forgot the route to the store where he shoplifted over-the-counter sleeping pills so he could take five or six a night. A night. Yep, we found a lot of those little blue tablets in his kitchen cabinet in April when we moved him and his truck here to Illinois …
He thinks he drove the truck loaded with his basic possessions here, but his oldest son, my husband, was at the wheel every mile cross-country as I followed them in our van also filled with his belongings.
This is the truck Pepaw has accused us of stealing. This is the vehicle that he was sure was our one-way ticket to prison and his one-way ticket to freedom in Tennessee where he would be welcomed by his daddy, aunts and uncles, and siblings, and work at his daddy's service station …
What else should I include? Unfortunately, he did smoke in it, but we've gotten rid of most of the stench. However, overall he took pretty good care of it.
Pepaw loves that truck and wants nothing more in the world but to drive it to the bowling alley or to the lake for fishing … or wherever his dreams may take him. That's all this 84-year-old man craves … and to get away from all these evil people who are ruining his life and putting him through hell.
Just one more thing to add to the want ad:
Must sell to help pay cost of owner's Alzheimer's care.
Saturday, August 14, 2010
Instruction manuals for my men — part 1
When my 28-year-old son was little, I would prepare detailed descriptions of his likes/dislikes and needs/wants when I left him with family, friends or babysitters. I wanted to make everyone’s life a little easier. One of the more colorful lists I prepared was written for his paternal grandparents, Meemaw and Pepaw, when he visited them in Florida at the tender age of 10.
INSTRUCTION MANUAL FOR MODEL WHEELER 1982
Thank you for selecting this product. This high-energy model is guaranteed to give you hours of joy. To extend the usefulness of this product, we suggest the following:
1. Unwrap carefully to make sure it’s not damaged upon arrival or emitting strange odors, though it was cleaned thoroughly before packaging.
2. Clean daily. Recommended methods of cleaning include hosing down in the yard or a small confined area such as a shower. Special brush included for cleaning of teeth.
3. Fuel consumption by this model varies but energy output increases with servings of fruits and vegetables, cereal and peanut butter and jelly (peanut butter on one piece of bread folded and jelly on the other piece). This model does not consume large quantities of meat. It does generally ingest more in the early morning hours.
4. Needs only occasional guidance, though a few reminders to complete certain tasks. (Part of the age and style of this model. Threat of swift kick in rear component should clear up the problem.)
5. This model is complete with extra politeness and helpfulness components. These should be functioning properly. If not, readjust by screwing hands around the neck region.
6. When bored, this model may whine a little bit. Ignore or lock in shed for a while to allow model to reset itself.
7. Model can become lethargic if exposed to too much television. Limit this exposure and encourage interaction with reading material.
8. For your enjoyment, this model is also equipped with extra hugging and kissing devices. Reciprocating enhances this feature.
We hope you enjoy this special product. It’s the only one in its class and style and was constructed with the finest components available. If you have questions about this model, ask the model itself or its manufacturers, Wheeler Inc.
Hmm, now what instructions would I include for my husband? Check back tomorrow …
INSTRUCTION MANUAL FOR MODEL WHEELER 1982
Thank you for selecting this product. This high-energy model is guaranteed to give you hours of joy. To extend the usefulness of this product, we suggest the following:
1. Unwrap carefully to make sure it’s not damaged upon arrival or emitting strange odors, though it was cleaned thoroughly before packaging.
2. Clean daily. Recommended methods of cleaning include hosing down in the yard or a small confined area such as a shower. Special brush included for cleaning of teeth.
3. Fuel consumption by this model varies but energy output increases with servings of fruits and vegetables, cereal and peanut butter and jelly (peanut butter on one piece of bread folded and jelly on the other piece). This model does not consume large quantities of meat. It does generally ingest more in the early morning hours.
4. Needs only occasional guidance, though a few reminders to complete certain tasks. (Part of the age and style of this model. Threat of swift kick in rear component should clear up the problem.)
5. This model is complete with extra politeness and helpfulness components. These should be functioning properly. If not, readjust by screwing hands around the neck region.
6. When bored, this model may whine a little bit. Ignore or lock in shed for a while to allow model to reset itself.
7. Model can become lethargic if exposed to too much television. Limit this exposure and encourage interaction with reading material.
8. For your enjoyment, this model is also equipped with extra hugging and kissing devices. Reciprocating enhances this feature.
We hope you enjoy this special product. It’s the only one in its class and style and was constructed with the finest components available. If you have questions about this model, ask the model itself or its manufacturers, Wheeler Inc.
Hmm, now what instructions would I include for my husband? Check back tomorrow …
Friday, July 30, 2010
Strokes affect our feline family members too
After I poured the food into the bowl at 4 a.m. last Friday, I quickly stepped back, expecting to be bowled over by our cat, Clark, who could hear one morsel of food hitting ceramic from the far corners of our house and come running. I had learned the routine well after nearly 14 years.
I didn't hear the thundering of his paws. Instead, his sister, Lois, savored the rare opportunity to dine first and quietly as the proper little lady she was. Hmm … I walked into the living room where I saw Clark in his basket located near the front door to satisfy his insatiable curiosity on who was coming in and out. He looked up at me as he always did.
"What's wrong, Clark Bar?" He always responded to the name we had jokingly bestowed on him years earlier in homage to the candy. He was also our "spotted cow," with eight random black spots on a sea of white fur. It was then that I remembered hardly seeing him outside of his basket on Thursday as I had been rushing in and out to attend to the needs of my dad-in-law, Pepaw, whose Alzheimer's was a little scarier each day.
He protested as I lifted him out of his basket, but that wasn't unusual because he never was a holdable cat. I set him on the floor where he slowly walked forward. I studied him and noticed he was dragging his back legs or attempting to use them properly, but they weren't cooperating as they kept slipping. I carried him to his litter box in case he needed to go. He apparently didn't. He pulled himself out and started to scoot back to the living room, bypassing the food bowl.
I quickly left a phone message for the vet's office to call me first thing when they opened in another three or so hours. I then returned to the living room where Clark laid on his side on the floor. I sat down next to him and petted him. He didn't protest when I returned him gently to his basket.
I wondered … could it be a stroke?
I had certainly learned a lot about stroke in the couple years that I have been working on a book about coping with this leading adult disability. Yes, all the challenges that human survivors and their caregivers face, but could stroke have affected my feline baby, too?
The vet's staff called about 7, and I could get Clark in at 8. When I picked him up and set him in his traditional cardboard travel box, he looked around at the world with his usual curiosity during the five minute drive. I waited patiently as the vet took him out of the examining room to look at him closer.
When the vet returned, I could see it his face. Clark had "thrown" a clot and experienced something like a stroke affecting the back half of his body. I admitted that I had suspected the cause, and he nodded. I started to cry because I knew what was going to happen. I told the doctor how I had to go this day to look for the next phase of housing for my dad-in-law with Alzheimer's. And now my baby didn't have a good prognosis. His age, weight and numerous other factors were working against him as the vet gently explained the limited care options.
My heart and mind chose the right one. Keep him comfortable, I told the vet and his assistant as I needed to call my husband and son to visit our Clark Bar for the last time. I would return that afternoon to be there with him to release him from his pain.
Somehow my family understood me on the phone between my tears and loss of voice as I explained it was the best thing for our baby. They would each go to see him in the next few hours.
And then my sister-in-law and I went to look at facilities that could care for her dad's future needs. It wasn't easy or pretty to see what Alzheimer's had in store for Pepaw. Oh Lord, what a depressing day!
Late in the afternoon, my sister-in-law accompanied me as I said good-bye to my baby, Clark "Superman" Kent Wheeler. Free of the cage, he looked around the room and nuzzled noses with me and attempted to stand, but his back legs wouldn't cooperate. The vet told us that some symptoms had worsened during the day. We had made the right decision.
All of us laughed as I recounted the day when Clark became famous around the veterinary clinic as the "bat cat." About 11 years earlier, Clark had captured a bat that had gotten into our upstairs. When I discovered what the commotion was all about, Clark had the bat in his mouth and was shaking his head back and forth, beating that bat against the floor with each blow. I managed to get him to drop the bat, which I somehow bagged while freaking out at the same time.
Off to the vet we immediately went, the bat in a paper bag and Clark in his cage. They had to keep him until the bat could be tested for rabies. I wanted that to be done quickly, so the next day, I drove the bat head in a box to the testing center 45 minutes away so that Clark could be cleared to come back home sooner. No rabies, thank God! He was welcomed home as a hero for saving us from that bat!
But this day was the end of the earthly road for our hero Clark. I kissed him good-bye as he relaxed in eternal sleep. He was now free to run without pain and do all the things our beloved feline friends love in a special place in heaven.
Purr, baby, purr.
I didn't hear the thundering of his paws. Instead, his sister, Lois, savored the rare opportunity to dine first and quietly as the proper little lady she was. Hmm … I walked into the living room where I saw Clark in his basket located near the front door to satisfy his insatiable curiosity on who was coming in and out. He looked up at me as he always did.
"What's wrong, Clark Bar?" He always responded to the name we had jokingly bestowed on him years earlier in homage to the candy. He was also our "spotted cow," with eight random black spots on a sea of white fur. It was then that I remembered hardly seeing him outside of his basket on Thursday as I had been rushing in and out to attend to the needs of my dad-in-law, Pepaw, whose Alzheimer's was a little scarier each day.
He protested as I lifted him out of his basket, but that wasn't unusual because he never was a holdable cat. I set him on the floor where he slowly walked forward. I studied him and noticed he was dragging his back legs or attempting to use them properly, but they weren't cooperating as they kept slipping. I carried him to his litter box in case he needed to go. He apparently didn't. He pulled himself out and started to scoot back to the living room, bypassing the food bowl.
I quickly left a phone message for the vet's office to call me first thing when they opened in another three or so hours. I then returned to the living room where Clark laid on his side on the floor. I sat down next to him and petted him. He didn't protest when I returned him gently to his basket.
I wondered … could it be a stroke?
I had certainly learned a lot about stroke in the couple years that I have been working on a book about coping with this leading adult disability. Yes, all the challenges that human survivors and their caregivers face, but could stroke have affected my feline baby, too?
The vet's staff called about 7, and I could get Clark in at 8. When I picked him up and set him in his traditional cardboard travel box, he looked around at the world with his usual curiosity during the five minute drive. I waited patiently as the vet took him out of the examining room to look at him closer.
When the vet returned, I could see it his face. Clark had "thrown" a clot and experienced something like a stroke affecting the back half of his body. I admitted that I had suspected the cause, and he nodded. I started to cry because I knew what was going to happen. I told the doctor how I had to go this day to look for the next phase of housing for my dad-in-law with Alzheimer's. And now my baby didn't have a good prognosis. His age, weight and numerous other factors were working against him as the vet gently explained the limited care options.
My heart and mind chose the right one. Keep him comfortable, I told the vet and his assistant as I needed to call my husband and son to visit our Clark Bar for the last time. I would return that afternoon to be there with him to release him from his pain.
Somehow my family understood me on the phone between my tears and loss of voice as I explained it was the best thing for our baby. They would each go to see him in the next few hours.
And then my sister-in-law and I went to look at facilities that could care for her dad's future needs. It wasn't easy or pretty to see what Alzheimer's had in store for Pepaw. Oh Lord, what a depressing day!
Late in the afternoon, my sister-in-law accompanied me as I said good-bye to my baby, Clark "Superman" Kent Wheeler. Free of the cage, he looked around the room and nuzzled noses with me and attempted to stand, but his back legs wouldn't cooperate. The vet told us that some symptoms had worsened during the day. We had made the right decision.
All of us laughed as I recounted the day when Clark became famous around the veterinary clinic as the "bat cat." About 11 years earlier, Clark had captured a bat that had gotten into our upstairs. When I discovered what the commotion was all about, Clark had the bat in his mouth and was shaking his head back and forth, beating that bat against the floor with each blow. I managed to get him to drop the bat, which I somehow bagged while freaking out at the same time.
Off to the vet we immediately went, the bat in a paper bag and Clark in his cage. They had to keep him until the bat could be tested for rabies. I wanted that to be done quickly, so the next day, I drove the bat head in a box to the testing center 45 minutes away so that Clark could be cleared to come back home sooner. No rabies, thank God! He was welcomed home as a hero for saving us from that bat!
But this day was the end of the earthly road for our hero Clark. I kissed him good-bye as he relaxed in eternal sleep. He was now free to run without pain and do all the things our beloved feline friends love in a special place in heaven.
Purr, baby, purr.
Monday, July 26, 2010
"I didn't sign up for this"
During four years of immersing myself in the topic of dementia and Alzheimer's, and writing and speaking about it, plus now serving as a caregiver, I've heard just about every scenario, crisis and triumph.
But there's one caregiver statement that really hits me now and then:
"I didn't sign up for this."
I was thinking about that one Sunday as I sweated in the July heat and watched my dad-in-law, Pepaw, fish. No, I didn't specifically sign up for this chore when I agreed to be his caregiver. I think it was in the fine print under "and all other duties as assigned."
There are a lot of things in life that I didn't sign up for. The first one that comes to mind is life itself. Nope, don't remember signing on any dotted line for this adventure, but I arrived and have tried to make the best of it.
I didn't sign up for my mom and dad, grandparents, aunts, uncles, cousins, etc. I got to know and love them and created my own place in the family. I learned to adjust and weave my way through a complex world that made no sense to a little girl.
I certainly didn't sign up for measles, chicken pox, bad tonsils, cuts that required stitches, and broken toes. If I had had any say, I would have requested summer weather year-round as a child so I could play outside every day.
I don't recall adding to my "want-to-do" list things like going to school, doing homework, being made fun of, fighting with so-called friends, and doing household chores. Those were the kind of things that came with this job of life.
I didn't sign up for rejection when the boy I had fallen for didn't like me in the same way in junior high, though he was quite amused by my lengthy and chatty letters. I didn't seek disappointment when I was not selected as a junior high drum major or my writing contest entries didn't win.
I did sign up for love when I met the right man and got married. However, I didn't sign up for arguments, financial headaches and the really hard work it takes to make a marriage work. But I've accepted those challenges along the way because I love this man.
I did sign up for motherhood when I gave birth to a robust boy. However, I must have missed all the fine print on the hours it demanded. Nowhere had I signed my name that I wanted to have more sleepless than restful nights those first couple of years. And I would have never agreed to chain myself to the pile of laundry a growing boy creates. But I waded through it and survived because I love my baby boy who's become a wonderful man.
I didn't sign up for the tragedy of war, high taxes, inept government and elected officials, potholes, road construction, mandatory insurance, and standing in line forever. I would have definitely voted down whoever created and implemented the phrase, "Life isn't fair."
I didn't sign up to be at my grandpa's side when he passed away, but I was there when it happened. I didn't sign up to attend the funerals of friends who died tragically, but I went to express my sympathy to their loved ones who had never asked for that kind of grief. I never signed up to lose my mom-in-law 10 years ago or my dear friend this year. I would have ripped and burned any paper that asked for my signature. I had signed up for love, but somebody made the rule that sometimes we lose the people we love. However, I wouldn't have missed the love for anything because the love really does last longer than the grief.
This spring, I signed up to be a caregiver for my father-in-law even though I knew Alzheimer's was slowly stealing his life. I didn't ask for the anger, accusations, threats and rudeness of recent weeks. I was not eagerly looking forward to having to help clean him when he soils himself, saving bushes from catching on fire when he flips his cigarettes into them, or having to hurry to his assisted living facility when they call about his erratic behavior.
I never asked for a broken heart, exhaustion, tears of frustration, loss of freedom and countless hours to do what I want to do, and being told, "You don't love me."
If caregivers saw every single thing that they'd have to do in caring for a loved with Alzheimer's or any catastrophic illness or injury, there would be few takers. Who asks for heartache, anger, pain and grief? I didn't, but I accept it because it's part of a higher calling and purpose in life, to show compassion to those we love … and to pray someone will show that same compassion when we need it in our final days.
No, I didn't sign up for "this," but no one is going to erase me now.
But there's one caregiver statement that really hits me now and then:
"I didn't sign up for this."
I was thinking about that one Sunday as I sweated in the July heat and watched my dad-in-law, Pepaw, fish. No, I didn't specifically sign up for this chore when I agreed to be his caregiver. I think it was in the fine print under "and all other duties as assigned."
There are a lot of things in life that I didn't sign up for. The first one that comes to mind is life itself. Nope, don't remember signing on any dotted line for this adventure, but I arrived and have tried to make the best of it.
I didn't sign up for my mom and dad, grandparents, aunts, uncles, cousins, etc. I got to know and love them and created my own place in the family. I learned to adjust and weave my way through a complex world that made no sense to a little girl.
I certainly didn't sign up for measles, chicken pox, bad tonsils, cuts that required stitches, and broken toes. If I had had any say, I would have requested summer weather year-round as a child so I could play outside every day.
I don't recall adding to my "want-to-do" list things like going to school, doing homework, being made fun of, fighting with so-called friends, and doing household chores. Those were the kind of things that came with this job of life.
I didn't sign up for rejection when the boy I had fallen for didn't like me in the same way in junior high, though he was quite amused by my lengthy and chatty letters. I didn't seek disappointment when I was not selected as a junior high drum major or my writing contest entries didn't win.
I did sign up for love when I met the right man and got married. However, I didn't sign up for arguments, financial headaches and the really hard work it takes to make a marriage work. But I've accepted those challenges along the way because I love this man.
I did sign up for motherhood when I gave birth to a robust boy. However, I must have missed all the fine print on the hours it demanded. Nowhere had I signed my name that I wanted to have more sleepless than restful nights those first couple of years. And I would have never agreed to chain myself to the pile of laundry a growing boy creates. But I waded through it and survived because I love my baby boy who's become a wonderful man.
I didn't sign up for the tragedy of war, high taxes, inept government and elected officials, potholes, road construction, mandatory insurance, and standing in line forever. I would have definitely voted down whoever created and implemented the phrase, "Life isn't fair."
I didn't sign up to be at my grandpa's side when he passed away, but I was there when it happened. I didn't sign up to attend the funerals of friends who died tragically, but I went to express my sympathy to their loved ones who had never asked for that kind of grief. I never signed up to lose my mom-in-law 10 years ago or my dear friend this year. I would have ripped and burned any paper that asked for my signature. I had signed up for love, but somebody made the rule that sometimes we lose the people we love. However, I wouldn't have missed the love for anything because the love really does last longer than the grief.
This spring, I signed up to be a caregiver for my father-in-law even though I knew Alzheimer's was slowly stealing his life. I didn't ask for the anger, accusations, threats and rudeness of recent weeks. I was not eagerly looking forward to having to help clean him when he soils himself, saving bushes from catching on fire when he flips his cigarettes into them, or having to hurry to his assisted living facility when they call about his erratic behavior.
I never asked for a broken heart, exhaustion, tears of frustration, loss of freedom and countless hours to do what I want to do, and being told, "You don't love me."
If caregivers saw every single thing that they'd have to do in caring for a loved with Alzheimer's or any catastrophic illness or injury, there would be few takers. Who asks for heartache, anger, pain and grief? I didn't, but I accept it because it's part of a higher calling and purpose in life, to show compassion to those we love … and to pray someone will show that same compassion when we need it in our final days.
No, I didn't sign up for "this," but no one is going to erase me now.
Saturday, July 24, 2010
So that's what sisters are for
I'm an only child. I acquired official sisters only through marriage, three through my husband Roger and two step-sisters when my dad remarried.
I was delighted when my sister-in-law Lisa was able to fly up here from Florida and spend a week with us and her dad, Pepaw, who she had not seen since we moved him here three months ago to care for his daily needs. Unfortunately, she has now witnessed the toll Alzheimer's is taking on him, and I wish I could have spared her that agony.
Pepaw's had a rough week or so as Alzheimer's has not been kind to him or us. He's been angry. He's been argumentative. He's been rude. He's been downright mean at moments. He's threatened to have everyone thrown in jail for any and all imaginary crimes against him. He still vows to whoop somebody's ass.
However, he's had some good moments, just very few of them while I'm around. He has turned on the charm for the ladies and has treated his daughter fairly well. His unpredictable behavior has forced us to consult with the doctor and realign his medications. Lisa and I knew it was time to plan for the future, as painful as it may be.
Friday was going to be tough. It's not exactly a pleasure trip to visit Alzheimer's units in nursing homes and try to imagine your loved one there. Lisa and I needed to research possible future care for Pepaw. I knew what to expect after writing a book on Alzheimer's and seeing firsthand how it ravages the human mind and body. Lisa did not.
We greeted several residents who replied "Hello," and saw a variety of activities and space devoted to memory care. However, I don't think I'll ever forget her face as she witnessed so many folks sitting in wheelchairs or asleep in the middle of the day or heads slumped forward. Will that be her dad someday?
Only God knows.
The visits emotionally drained us. However, the toughest challenge of the day awaited me. Friday morning, I had taken my cat Clark to the vet because he seemed to be dragging his hind legs. I learned that he had had a stroke and his age, 14, and several other factors led to a poor prognosis. I had to prepare to say good-bye to my baby, Clark "Superman" Kent Wheeler, to spare him pain. In tears, I called Roger and our son, Gordo, who had been a freshman in high school when we adopted Clark and his sister, Lois Lane Kent Wheeler, as kittens from the animal shelter. I advised them to visit Clark at the vet's and say their good-byes.
I felt so bad for exposing Lisa to another sad event, but she insisted on accompanying me as I hugged and petted my baby and stayed with him until the injection ended his pain and he began his eternal sleep.
In that moment, I learned that what sisters are for … to wipe each other's tears, to keep tissues close at hand, to answer your cell phone when you're crying too hard to talk, to support you with strong and loving arms, to love you unconditionally, to always find room in her heart to help carry your burden when her own heart is seemingly full.
And at the end of the day, as I dropped her off at the residence where her dad lives, we caught him walking down the sidewalk. As we drove up, Lisa greeted him and asked where he was going. To the highway, he answered. Her look reassured me that she would handle this, and I slowly drove away.
A sister's work is never done, and it seems impossible to say "thank you" enough. That's where love comes into the equation and makes life equal and bearable.
I love you, sis. Thank you for loving me.
I was delighted when my sister-in-law Lisa was able to fly up here from Florida and spend a week with us and her dad, Pepaw, who she had not seen since we moved him here three months ago to care for his daily needs. Unfortunately, she has now witnessed the toll Alzheimer's is taking on him, and I wish I could have spared her that agony.
Pepaw's had a rough week or so as Alzheimer's has not been kind to him or us. He's been angry. He's been argumentative. He's been rude. He's been downright mean at moments. He's threatened to have everyone thrown in jail for any and all imaginary crimes against him. He still vows to whoop somebody's ass.
However, he's had some good moments, just very few of them while I'm around. He has turned on the charm for the ladies and has treated his daughter fairly well. His unpredictable behavior has forced us to consult with the doctor and realign his medications. Lisa and I knew it was time to plan for the future, as painful as it may be.
Friday was going to be tough. It's not exactly a pleasure trip to visit Alzheimer's units in nursing homes and try to imagine your loved one there. Lisa and I needed to research possible future care for Pepaw. I knew what to expect after writing a book on Alzheimer's and seeing firsthand how it ravages the human mind and body. Lisa did not.
We greeted several residents who replied "Hello," and saw a variety of activities and space devoted to memory care. However, I don't think I'll ever forget her face as she witnessed so many folks sitting in wheelchairs or asleep in the middle of the day or heads slumped forward. Will that be her dad someday?
Only God knows.
The visits emotionally drained us. However, the toughest challenge of the day awaited me. Friday morning, I had taken my cat Clark to the vet because he seemed to be dragging his hind legs. I learned that he had had a stroke and his age, 14, and several other factors led to a poor prognosis. I had to prepare to say good-bye to my baby, Clark "Superman" Kent Wheeler, to spare him pain. In tears, I called Roger and our son, Gordo, who had been a freshman in high school when we adopted Clark and his sister, Lois Lane Kent Wheeler, as kittens from the animal shelter. I advised them to visit Clark at the vet's and say their good-byes.
I felt so bad for exposing Lisa to another sad event, but she insisted on accompanying me as I hugged and petted my baby and stayed with him until the injection ended his pain and he began his eternal sleep.
In that moment, I learned that what sisters are for … to wipe each other's tears, to keep tissues close at hand, to answer your cell phone when you're crying too hard to talk, to support you with strong and loving arms, to love you unconditionally, to always find room in her heart to help carry your burden when her own heart is seemingly full.
And at the end of the day, as I dropped her off at the residence where her dad lives, we caught him walking down the sidewalk. As we drove up, Lisa greeted him and asked where he was going. To the highway, he answered. Her look reassured me that she would handle this, and I slowly drove away.
A sister's work is never done, and it seems impossible to say "thank you" enough. That's where love comes into the equation and makes life equal and bearable.
I love you, sis. Thank you for loving me.
Tuesday, July 13, 2010
I'm going to jail and Pepaw will probably be in the next cell
My dad-in-law, Pepaw, still insists that I'm going to jail for stealing his truck (see earlier post on "I'm going to jail"). He really, really does not like me now.
Yes, dementia is really playing havoc with him now as he's obsessing about his pick-up truck that we brought here to Illinois when we moved him in late April. We gently took the keys away before we left Florida because his driving terrified us. We had to do it to protect him and everyone else on the road.
The essential question families must ask themselves if they're worried about their loved ones' driving: would I allow my child or grandchild to ride with them? If the answer's no, the keys must go. That's it. Period. And I'm not being flippant when I say, don't let pride take a fatal ride.
Pepaw's truck is sitting in our driveway out of his sight, but this week, at his assisted living apartment, he has composed a new song: "It's my truck. You stole my truck. I can drive. I've been driving all my life. You're going to jail …" Second verse, same as the first. One hundredth verse, same as the first …
Pepaw was an auto mechanic for many years. He threatened to call a towing company to bring his truck to him and a locksmith to get a new key made. That's why we can't park the vehicle at his residence. He can't be trusted because he'll find a way to fire it up.
Tired of his accusations directed at me and my husband Roger, I told him, "Yes, I'll go to jail … if I LET you drive. You have a memory problem, and we don't want you to get hurt or hurt someone else."
He gave me the same evil eye he did when he threatened to whoop my ass the day before.
Alzheimer's has robbed him of common sense, power to reason and judgment. He says there's nothing wrong with his memory or driving. He thinks he drove here from Tennessee. Roger never let him behind the wheel during that drive from Florida. He says he drove an ice truck and never had an accident. That's true … 60-some years ago. And he was an okay driver during his life until dementia took a skill away that he doesn't even know is missing. (Any day now he's getting the official form from the doctor and state that will revoke his driving privileges. We hope that helps when he sees it in writing.)
Now, as for stubbornness, I think that's a Pepaw trademark that has mushroomed in recent days as he will not acknowledge anything that has actually happened or that HE did.
Yes, on Monday, the staff caught Pepaw removing a license plate from a vehicle in the parking lot. When they told me, I was appalled and asked him about it. He looked me in the eye and said:
"I didn't do that. I found it laying in the grass."
"Everybody saw you do it!"
Now, I've learned in two and a half months when Pepaw is confused or forgetful and when he's simply lying. There's a mannerism about him that reeks of a lie, and boy, did he stink at that moment.
I couldn't help blurting out in laughter, "You're lying!" No, dementia was not the culprit here.
"Nope." His voice and expression were cocky and confident.
That little shit. I had to say it: "You know stealing a license plate is against the law. You could go to jail, too!"
Nope, I was still the felon. "The police are coming to knock on your door and take you to jail for stealing my truck. That's against the law."
I was nice. When he went outside for a smoke, I removed from his room a pocket knife, two pairs of pliers and the screwdriver he had used on the license plate.
A little while later, he came up to me and said, "Did you take my screwdriver?"
"Yep." I smiled, eager to confess my guilt because he knew he had been busted.
He shook his finger at me. "You're going to jail …"
Well, it looks like Pepaw and I may both be headed to the big house. With my luck, we'll probably get adjoining cells …
Guard!!
Yes, dementia is really playing havoc with him now as he's obsessing about his pick-up truck that we brought here to Illinois when we moved him in late April. We gently took the keys away before we left Florida because his driving terrified us. We had to do it to protect him and everyone else on the road.
The essential question families must ask themselves if they're worried about their loved ones' driving: would I allow my child or grandchild to ride with them? If the answer's no, the keys must go. That's it. Period. And I'm not being flippant when I say, don't let pride take a fatal ride.
Pepaw's truck is sitting in our driveway out of his sight, but this week, at his assisted living apartment, he has composed a new song: "It's my truck. You stole my truck. I can drive. I've been driving all my life. You're going to jail …" Second verse, same as the first. One hundredth verse, same as the first …
Pepaw was an auto mechanic for many years. He threatened to call a towing company to bring his truck to him and a locksmith to get a new key made. That's why we can't park the vehicle at his residence. He can't be trusted because he'll find a way to fire it up.
Tired of his accusations directed at me and my husband Roger, I told him, "Yes, I'll go to jail … if I LET you drive. You have a memory problem, and we don't want you to get hurt or hurt someone else."
He gave me the same evil eye he did when he threatened to whoop my ass the day before.
Alzheimer's has robbed him of common sense, power to reason and judgment. He says there's nothing wrong with his memory or driving. He thinks he drove here from Tennessee. Roger never let him behind the wheel during that drive from Florida. He says he drove an ice truck and never had an accident. That's true … 60-some years ago. And he was an okay driver during his life until dementia took a skill away that he doesn't even know is missing. (Any day now he's getting the official form from the doctor and state that will revoke his driving privileges. We hope that helps when he sees it in writing.)
Now, as for stubbornness, I think that's a Pepaw trademark that has mushroomed in recent days as he will not acknowledge anything that has actually happened or that HE did.
Yes, on Monday, the staff caught Pepaw removing a license plate from a vehicle in the parking lot. When they told me, I was appalled and asked him about it. He looked me in the eye and said:
"I didn't do that. I found it laying in the grass."
"Everybody saw you do it!"
Now, I've learned in two and a half months when Pepaw is confused or forgetful and when he's simply lying. There's a mannerism about him that reeks of a lie, and boy, did he stink at that moment.
I couldn't help blurting out in laughter, "You're lying!" No, dementia was not the culprit here.
"Nope." His voice and expression were cocky and confident.
That little shit. I had to say it: "You know stealing a license plate is against the law. You could go to jail, too!"
Nope, I was still the felon. "The police are coming to knock on your door and take you to jail for stealing my truck. That's against the law."
I was nice. When he went outside for a smoke, I removed from his room a pocket knife, two pairs of pliers and the screwdriver he had used on the license plate.
A little while later, he came up to me and said, "Did you take my screwdriver?"
"Yep." I smiled, eager to confess my guilt because he knew he had been busted.
He shook his finger at me. "You're going to jail …"
Well, it looks like Pepaw and I may both be headed to the big house. With my luck, we'll probably get adjoining cells …
Guard!!
Sunday, July 11, 2010
I'm going to jail
Yep, I'm going to jail. It's a good thing I kinda like orange.
I had been home for just a little over two hours Sunday after the Pilot International convention in Louisville, when my dad-in-law, Pepaw, told me I was going to jail.
Welcome home … to dementia.
Pepaw demanded I give him the keys to his truck or he was calling the police.
"It's grand theft. You'll go to jail …
"I'm calling a tow truck …
"I talked to the chief of police, and he said if I call him again, he'll arrest you …
"I don't want you to go to jail, so return my truck …
"It's my truck …
"You're stealing my money, too. It's my money …"
Pepaw sure knows how to make up for lost time. He pulled out the new Illinois fishing license and showed it to me, saying, "I can drive in Illinois. This is my driver's license."
"It's a fishing license. See where it says fishing …"
So, pardon me for a short story today. I need to pack my bag for jail. Don't need much because I know I'll look marvelous in orange.
And as Susan Hayward said in the classic movie, "I'll Cry Tomorrow."
I had been home for just a little over two hours Sunday after the Pilot International convention in Louisville, when my dad-in-law, Pepaw, told me I was going to jail.
Welcome home … to dementia.
Pepaw demanded I give him the keys to his truck or he was calling the police.
"It's grand theft. You'll go to jail …
"I'm calling a tow truck …
"I talked to the chief of police, and he said if I call him again, he'll arrest you …
"I don't want you to go to jail, so return my truck …
"It's my truck …
"You're stealing my money, too. It's my money …"
Pepaw sure knows how to make up for lost time. He pulled out the new Illinois fishing license and showed it to me, saying, "I can drive in Illinois. This is my driver's license."
"It's a fishing license. See where it says fishing …"
So, pardon me for a short story today. I need to pack my bag for jail. Don't need much because I know I'll look marvelous in orange.
And as Susan Hayward said in the classic movie, "I'll Cry Tomorrow."
Friday, July 9, 2010
A brain injury caregiver who shared her free time with me
I am deeply humbled that a full-time caregiver gave ME an hour and half of her precious free time Friday to talk about three of the greatest joys of her life: her son, caregiving and educating the world about brain injuries.
As I listened to the succinct, insightful and emotional words of Jenny Carter of Dallas, Texas, I was immediately captivated by her honesty to literally tell it like it is when it comes to the five years she has been a full-time caregiver to her son, Sean, who suffered extensive injuries in a 2005 auto accident at age 22. The most serious long-term evidence of the accident has been a traumatic brain injury, which has robbed him of the ability to walk and talk and placed other limitations on his physical body.
Ah, but not his mind, which is sharp and full of the same kind of witty and uproarious comments from a 20-something modern male. I know the vocabulary and style well: my own son is 28. The only difference is that Sean spouts all that with his communication board.
Jenny taught me more in that 90 minutes than college students can learn in years of pursuit of a degree. What many people do not realize is that something like a brain injury or stroke is an immediate life-altering situation. "Normal" ceases in that moment. That's it. There's no cure. There is only endless hard work and an ongoing hope for continued recovery, to reclaim portions of a life lost to a cruel injury that lies hidden from our view. And nobody knows what the future will bring.
Despite the initial heartbreak and daily challenges, Jenny and Sean have this amazing attitude: they live life. They absolutely refuse to wallow in self-pity and lamenting what might have been. Though she readily admits it's still an adjustment at times and there are always going to be some tough days, they've learned to move beyond the tragedy and truly appreciate life. The mom brought her three sons up to choose to be happy, and she and Sean have embraced that philosophy with even greater fervor.
And it shows in their radiant smiles, their shining eyes, and how they get out into the world and refuse to hide away. Yes, they're serious about warning of the dangers of drinking and driving, but they're even more determined to not let life pass them by.
My conversation with Jenny reinforces what I have learned about coping with strokes and brain injuries: attitude is 90 percent. Those survivors and caregivers who have chosen to focus on the positive, the possibilities and the gift of life itself are the ones who continuously make gains emotionally, physically and spiritually. Those who have faith and believe in something bigger than themselves also excel in everyday life and surround themselves with people they inspire and lift in unique ways.
What wonderful lessons for each of us, how we attract what we radiate. Bad things happen, but we human beings have been blessed with a capability to reach within and without to touch and enrich other lives … whether we're the ones lending or accepting hands of help.
What awesome powers we possess! What awesome people we can welcome into our lives! What awesome strides we can make when we give ourselves permission to live!
And thank you, Jenny, for giving me one of the most precious gifts in this world: you.
As I listened to the succinct, insightful and emotional words of Jenny Carter of Dallas, Texas, I was immediately captivated by her honesty to literally tell it like it is when it comes to the five years she has been a full-time caregiver to her son, Sean, who suffered extensive injuries in a 2005 auto accident at age 22. The most serious long-term evidence of the accident has been a traumatic brain injury, which has robbed him of the ability to walk and talk and placed other limitations on his physical body.
Ah, but not his mind, which is sharp and full of the same kind of witty and uproarious comments from a 20-something modern male. I know the vocabulary and style well: my own son is 28. The only difference is that Sean spouts all that with his communication board.
Jenny taught me more in that 90 minutes than college students can learn in years of pursuit of a degree. What many people do not realize is that something like a brain injury or stroke is an immediate life-altering situation. "Normal" ceases in that moment. That's it. There's no cure. There is only endless hard work and an ongoing hope for continued recovery, to reclaim portions of a life lost to a cruel injury that lies hidden from our view. And nobody knows what the future will bring.
Despite the initial heartbreak and daily challenges, Jenny and Sean have this amazing attitude: they live life. They absolutely refuse to wallow in self-pity and lamenting what might have been. Though she readily admits it's still an adjustment at times and there are always going to be some tough days, they've learned to move beyond the tragedy and truly appreciate life. The mom brought her three sons up to choose to be happy, and she and Sean have embraced that philosophy with even greater fervor.
And it shows in their radiant smiles, their shining eyes, and how they get out into the world and refuse to hide away. Yes, they're serious about warning of the dangers of drinking and driving, but they're even more determined to not let life pass them by.
My conversation with Jenny reinforces what I have learned about coping with strokes and brain injuries: attitude is 90 percent. Those survivors and caregivers who have chosen to focus on the positive, the possibilities and the gift of life itself are the ones who continuously make gains emotionally, physically and spiritually. Those who have faith and believe in something bigger than themselves also excel in everyday life and surround themselves with people they inspire and lift in unique ways.
What wonderful lessons for each of us, how we attract what we radiate. Bad things happen, but we human beings have been blessed with a capability to reach within and without to touch and enrich other lives … whether we're the ones lending or accepting hands of help.
What awesome powers we possess! What awesome people we can welcome into our lives! What awesome strides we can make when we give ourselves permission to live!
And thank you, Jenny, for giving me one of the most precious gifts in this world: you.
Thursday, July 8, 2010
Pepaw was a firecracker for sure!
Hmm … how do I describe the Fourth of July with Pepaw, my dad-in-law, who has Alzheimer's?
He was a real firecracker, but my husband Roger and I were the ones who wanted to explode before the fireworks ever hit the sky.
Nope, surprisingly Pepaw didn't ask about his cigarettes when we arrived to take him fishing. He immediately started with:
• "I've been waiting for you for three days …"
• "I want the keys to my truck. I want my truck now …"
• "The government is stealing my money …" (Well, I'll go along with that one.)
• "They don't know how to cook here …"
• "I want cookies …"
I love THE Cookie Monster, but I wasn't too crazy about THIS cookie monster on Sunday.
By the time we got Pepaw to the fishing spot, he had complained about all those topics and others a couple more times. As we unloaded the van for the adventure, Roger whispered to me, "Is there anything he hasn't complained about?" I reassured him, "Nope."
The boys spent five hours in the pursuit of fish, while I worked on my books. It was overall pretty relaxing. I asked Pepaw if he wanted something to eat.
"Cookies," he said.
"Nope. No cookies today. Strawberries?"
"I'd rather have a cigarette."
"Oops, forgot them. Strawberries?"
The boys each caught two fish, which we gave to a fisherwoman who was more than eager to take them home to her frying pan. I shed no tears over losing that opportunity.
As we packed up, Pepaw insisted on getting cookies at the store. So, we obliged to let him pick out some as he explained the cookies were healthier than the food he was being served at his residence. I made the mistake of contradicting him.
"You can have some cookies after you eat dinner."
"No, don't want any dinner. Cookies are fine."
"OK, how about we pick up a sandwich for you on the way back?"
"Nope, cookies are fine."
This went on for several moments, and I realized I was getting yanked further into a level of frustration that was making me hotter than the fish in that woman's frying pan. I looked him in the eye and grabbed one of the wild excuses rapidly filling my head.
"Do you realize that Roger and I could be thrown in jail if you're not eating properly!"
"I'm fine."
As Pepaw searched for the cheapest cookies in the aisle, I turned to Roger and said, "I'm done."
In that moment, my husband became the wisest man in the world. He knew that when I, who has maintained the most patience since bringing his dad to town, had lost it, it was time to call it a day. He quietly said he'd take care of his dad, and he did.
On my own, I over-analyzed my reaction to this whole thing. I was tired. I was sweaty. I had spent entirely too much quality time with my husband and father-in-law. I was arguing with a disease that never loses.
When we met out at the van, I had cooled off. Then Roger took me aside and said:
"Guess what he just told me!" Uh oh, Pepaw had figured out how to get into the locked drawer where his cigarettes were hidden …
Hmm, cookies were sounding awfully good for dinner.
He was a real firecracker, but my husband Roger and I were the ones who wanted to explode before the fireworks ever hit the sky.
Nope, surprisingly Pepaw didn't ask about his cigarettes when we arrived to take him fishing. He immediately started with:
• "I've been waiting for you for three days …"
• "I want the keys to my truck. I want my truck now …"
• "The government is stealing my money …" (Well, I'll go along with that one.)
• "They don't know how to cook here …"
• "I want cookies …"
I love THE Cookie Monster, but I wasn't too crazy about THIS cookie monster on Sunday.
By the time we got Pepaw to the fishing spot, he had complained about all those topics and others a couple more times. As we unloaded the van for the adventure, Roger whispered to me, "Is there anything he hasn't complained about?" I reassured him, "Nope."
The boys spent five hours in the pursuit of fish, while I worked on my books. It was overall pretty relaxing. I asked Pepaw if he wanted something to eat.
"Cookies," he said.
"Nope. No cookies today. Strawberries?"
"I'd rather have a cigarette."
"Oops, forgot them. Strawberries?"
The boys each caught two fish, which we gave to a fisherwoman who was more than eager to take them home to her frying pan. I shed no tears over losing that opportunity.
As we packed up, Pepaw insisted on getting cookies at the store. So, we obliged to let him pick out some as he explained the cookies were healthier than the food he was being served at his residence. I made the mistake of contradicting him.
"You can have some cookies after you eat dinner."
"No, don't want any dinner. Cookies are fine."
"OK, how about we pick up a sandwich for you on the way back?"
"Nope, cookies are fine."
This went on for several moments, and I realized I was getting yanked further into a level of frustration that was making me hotter than the fish in that woman's frying pan. I looked him in the eye and grabbed one of the wild excuses rapidly filling my head.
"Do you realize that Roger and I could be thrown in jail if you're not eating properly!"
"I'm fine."
As Pepaw searched for the cheapest cookies in the aisle, I turned to Roger and said, "I'm done."
In that moment, my husband became the wisest man in the world. He knew that when I, who has maintained the most patience since bringing his dad to town, had lost it, it was time to call it a day. He quietly said he'd take care of his dad, and he did.
On my own, I over-analyzed my reaction to this whole thing. I was tired. I was sweaty. I had spent entirely too much quality time with my husband and father-in-law. I was arguing with a disease that never loses.
When we met out at the van, I had cooled off. Then Roger took me aside and said:
"Guess what he just told me!" Uh oh, Pepaw had figured out how to get into the locked drawer where his cigarettes were hidden …
Hmm, cookies were sounding awfully good for dinner.
Sunday, July 4, 2010
Taking away more freedoms on Independence Day
I'm not sure how my dad-in-law will view this Independence Day. I'm not sure if he realizes how much freedom he's lost this year.
Thanks to the ravages of dementia, Pepaw can't live by himself anymore. We have to monitor his eating habits to make sure he's getting proper nutrition and won't eat cookies and donuts all the time. We had to take control of his medicine because he wasn't taking it properly. We have to remind him to maintain personal hygiene. We had to take away the car keys because it wasn't safe for him to drive.
The other day, we had to take an even bolder step: ration his cigarettes. Now he can't have one without going to a CNA at his residence and asking for it out of a locked drawer. That's the only way we could be sure he'd smoke in the proper place outside.
Yes, I hate cigarettes, but that was one of the hardest things I had to do when my husband and I decided to take away Pepaw's freedom to smoke whenever and wherever he wanted to. I hated taking away one of the few remaining things he truly enjoys, but we had to do it because he couldn't remember the rules on his own.
And he certainly couldn't remember how many cigarettes he was consuming. He said he had only had two a day. Hmm, less than 48 hours earlier, I had given him a new pack of 20. Yep, his math skills are a bit fuzzy these days …
In great detail the other day, he told me how to dissipate smoke and keep it from reaching a smoke detector. I'm not going to tell you how (to avoid copycat behavior), but it was pretty clever and he was quite proud of himself. I was actually impressed. If I weren't fuming at the time, I might have congratulated him on his creativity.
How has he responded to the new restrictions? I don't know yet because I thought it was best to stay away for a couple of days so the CNAs could ease him into the new routine. It was the best and most consistent thing for him. Will he simply ask us for cigarettes when we show up on the Fourth of July to see him? Will he get mad and blame me for the limiting his freedom to smoke? Will he have forgotten?
No matter how Pepaw greets me on Independence Day, I'm ready for anything because it's one of the risks of love, concern and caregiving. Perhaps the thickness of my skin is growing in proportion to the size of my heart because I know I'm going to hear him say again very soon, "Thanks, darlin'" and "You let me know if you need anything."
God bless America and Pepaw.
Thanks to the ravages of dementia, Pepaw can't live by himself anymore. We have to monitor his eating habits to make sure he's getting proper nutrition and won't eat cookies and donuts all the time. We had to take control of his medicine because he wasn't taking it properly. We have to remind him to maintain personal hygiene. We had to take away the car keys because it wasn't safe for him to drive.
The other day, we had to take an even bolder step: ration his cigarettes. Now he can't have one without going to a CNA at his residence and asking for it out of a locked drawer. That's the only way we could be sure he'd smoke in the proper place outside.
Yes, I hate cigarettes, but that was one of the hardest things I had to do when my husband and I decided to take away Pepaw's freedom to smoke whenever and wherever he wanted to. I hated taking away one of the few remaining things he truly enjoys, but we had to do it because he couldn't remember the rules on his own.
And he certainly couldn't remember how many cigarettes he was consuming. He said he had only had two a day. Hmm, less than 48 hours earlier, I had given him a new pack of 20. Yep, his math skills are a bit fuzzy these days …
In great detail the other day, he told me how to dissipate smoke and keep it from reaching a smoke detector. I'm not going to tell you how (to avoid copycat behavior), but it was pretty clever and he was quite proud of himself. I was actually impressed. If I weren't fuming at the time, I might have congratulated him on his creativity.
How has he responded to the new restrictions? I don't know yet because I thought it was best to stay away for a couple of days so the CNAs could ease him into the new routine. It was the best and most consistent thing for him. Will he simply ask us for cigarettes when we show up on the Fourth of July to see him? Will he get mad and blame me for the limiting his freedom to smoke? Will he have forgotten?
No matter how Pepaw greets me on Independence Day, I'm ready for anything because it's one of the risks of love, concern and caregiving. Perhaps the thickness of my skin is growing in proportion to the size of my heart because I know I'm going to hear him say again very soon, "Thanks, darlin'" and "You let me know if you need anything."
God bless America and Pepaw.
Tuesday, June 29, 2010
Hey, you aren't supposed to forget me yet!
A note to my friend, Molly, an Alzheimer's caregiver who passed away unexpectedly in January. I always shared moments like this with her. It's a habit that's hard to break …
Dear Molly,
Here's my most recent posting on Facebook:
My dear friend went to visit my dad-in-law Sunday while I was out of town. As she sat out on the porch with him watching traffic go by, Pepaw told her that his son Roger & "his girlfriend" come over & visit him a lot. I knew this was going to happen. I leave for one weekend. All right, Roger, who's your girlfriend?!?!? Alzheimer's … I choose to laugh now & save the tears for later.
So, how did I do? I think the spontaneous humor was quite clever and cute, and you know I can't pass up a good joke. But the best thing about it was that it was natural and real laughter from deep within my heart. Lord knows I always looked for a sliver of humor to try to lift you on your toughest caregiving days when Alzheimer's shattered your beloved Joe's memory one vicious blow at a time …
Did I work through my sorrow and pain well?
Thank goodness for shirt sleeves to wipe my tears because I'm too lazy to get up and get a tissue!
As midnight creeps past me, I've decided wisely not to run over and see Pepaw in the morning and shout: "After all I'm doing for you, you can't remember that I married your and Meemaw's oldest son and gave you a grandson? Dementia is stealing you from me way too fast! I just got you up here to take care of you, and two months later, you think I'm just his girlfriend! Hey, you aren't supposed to forget me yet! What's with you?!?!"
Okay, Molly, you're the only one to hear me rehearse those words just once, never to be heard again.
Continue to reassure me that it's okay to shed a few tears here and there … much easier to absorb than a flash flood. It's okay to laugh my way through this unexpected memory slip because I'm not laughing at Pepaw: I'm laughing at life, choosing to rise above it rather than let it beat me down now. If I can weather these smaller storms with humor and compassion, it will be easier to handle the emotional tornadoes that will attempt to pummel me down the road.
I still laugh at the great story you shared with me about Joe:
Joe was sleeping this afternoon and when he woke he heard the lawn mower. Thought I would get the front lawn mowed while he slept. All of a sudden I heard the sound of a motor coming from the back yard. I stopped my machine and went to the back yard to see Joe mowing the back yard with the snow blower. Guess what? He was going in perfectly straight lines and the blower was not digging up the grass at all. Before long the snow blower ran out of gas. I told Joe that something was wrong and we would have to wait until our son could come over and fix it. Nice to know that eventually it runs out of gas, stops and gets put away!
Thanks for showing me that there are still many, many reasons to savor and save the funny moments!
Love you!
Monica
P.S. And thank goodness we don't have a snow blower!
Dear Molly,
Here's my most recent posting on Facebook:
My dear friend went to visit my dad-in-law Sunday while I was out of town. As she sat out on the porch with him watching traffic go by, Pepaw told her that his son Roger & "his girlfriend" come over & visit him a lot. I knew this was going to happen. I leave for one weekend. All right, Roger, who's your girlfriend?!?!? Alzheimer's … I choose to laugh now & save the tears for later.
So, how did I do? I think the spontaneous humor was quite clever and cute, and you know I can't pass up a good joke. But the best thing about it was that it was natural and real laughter from deep within my heart. Lord knows I always looked for a sliver of humor to try to lift you on your toughest caregiving days when Alzheimer's shattered your beloved Joe's memory one vicious blow at a time …
Did I work through my sorrow and pain well?
Thank goodness for shirt sleeves to wipe my tears because I'm too lazy to get up and get a tissue!
As midnight creeps past me, I've decided wisely not to run over and see Pepaw in the morning and shout: "After all I'm doing for you, you can't remember that I married your and Meemaw's oldest son and gave you a grandson? Dementia is stealing you from me way too fast! I just got you up here to take care of you, and two months later, you think I'm just his girlfriend! Hey, you aren't supposed to forget me yet! What's with you?!?!"
Okay, Molly, you're the only one to hear me rehearse those words just once, never to be heard again.
Continue to reassure me that it's okay to shed a few tears here and there … much easier to absorb than a flash flood. It's okay to laugh my way through this unexpected memory slip because I'm not laughing at Pepaw: I'm laughing at life, choosing to rise above it rather than let it beat me down now. If I can weather these smaller storms with humor and compassion, it will be easier to handle the emotional tornadoes that will attempt to pummel me down the road.
I still laugh at the great story you shared with me about Joe:
Joe was sleeping this afternoon and when he woke he heard the lawn mower. Thought I would get the front lawn mowed while he slept. All of a sudden I heard the sound of a motor coming from the back yard. I stopped my machine and went to the back yard to see Joe mowing the back yard with the snow blower. Guess what? He was going in perfectly straight lines and the blower was not digging up the grass at all. Before long the snow blower ran out of gas. I told Joe that something was wrong and we would have to wait until our son could come over and fix it. Nice to know that eventually it runs out of gas, stops and gets put away!
Thanks for showing me that there are still many, many reasons to savor and save the funny moments!
Love you!
Monica
P.S. And thank goodness we don't have a snow blower!
Friday, June 25, 2010
Caregiving: The guilt was killing me!
Guilt is one of those power words that brings down governments and sends children into hiding.
No, I didn't commit a capital crime or break something. I just felt this overwhelming guilt for deciding to leave town for a couple of days to see family and friends and interview stroke survivors and caregivers. I felt guilty for being away from my dad-in-law for more than a day.
I've been with Pepaw almost every day for two months since we brought him here to live in Peoria so we could take care of him. I did take Monday and Wednesday off this week, and yet Thursday, as I picked him up from bowling and attended the Alzheimer's support group meeting with him, guilt began to sweep me for not being here for him this weekend.
Caregiver guilt: it's a killer.
I gave myself the same pep talk I give other caregivers when I speak to groups: you've got to take time for yourself or you're of no use to anyone.
The caregiver inside me shouted: what a crock of you-know-what! Shame on you for ABANDONING your father-in-law! Tsk tsk tsk!
I know I'm a Gemini, but these two voices were about to deafen me.
Here's the first debate:
• My husband will reassure me that NOBODY can take care of his dad as well as me. What a smart, smart man I married.
• But I have to let someone else fill in and learn the ropes of the everyday stuff. This is the weekend my son needs to have some one-on-one time with his grandpa so that Pepaw doesn't forget who he is.
Here's the second debate:
• I need to make sure he's out doing stuff HE wants to do every day.
• Hey, Pepaw is probably trying to find a polite way to say, "Hey, I need a vacation. I want to watch TV all day."
And there are a dozen more arguments that are trying to hold me captive.
I now realize the source of and solution to my guilt: love.
In two months, I've truly fallen in love with this man. I'm closer now to him than at any other time in the 36 years we've known each other, including the last 31 as his daughter-in-law. Sure, I'd given him hugs when we'd see each other after long separations and when it was time to say goodbye. Now I give him a hug every day I see him because he's become very special to me, more than just my dad-in-law.
I tell him every time I see him that I love him. And he tells me the same.
I care about his everyday life and want to be sure he eats properly and gets his medication. I've endured uncomfortable nights in a rocker-recliner so I could be close by during his first nights in new places, so that he wouldn't be confused or lost or unable to find his way to the bathroom at 3 a.m. I've helped him shower and made sure he had clean clothes. I've taken him to doctors' appointments and tried to ask all the right questions so he gets the best care. I've sat in bowling alleys and bought him cigarettes.
And just like every caring caregiver I've ever met, I do it because I love him. I want him to be happy, healthy, comfortable and pain-free. This is what we do for our loved ones. Hence, the name.
My guilt is now eased by the knowledge that I will come back after a few days away refreshed and more alert to meet his ongoing needs. That is how I will become a better caregiver by giving myself some care.
And by golly, I'm worth it! Pepaw tells me so!
No, I didn't commit a capital crime or break something. I just felt this overwhelming guilt for deciding to leave town for a couple of days to see family and friends and interview stroke survivors and caregivers. I felt guilty for being away from my dad-in-law for more than a day.
I've been with Pepaw almost every day for two months since we brought him here to live in Peoria so we could take care of him. I did take Monday and Wednesday off this week, and yet Thursday, as I picked him up from bowling and attended the Alzheimer's support group meeting with him, guilt began to sweep me for not being here for him this weekend.
Caregiver guilt: it's a killer.
I gave myself the same pep talk I give other caregivers when I speak to groups: you've got to take time for yourself or you're of no use to anyone.
The caregiver inside me shouted: what a crock of you-know-what! Shame on you for ABANDONING your father-in-law! Tsk tsk tsk!
I know I'm a Gemini, but these two voices were about to deafen me.
Here's the first debate:
• My husband will reassure me that NOBODY can take care of his dad as well as me. What a smart, smart man I married.
• But I have to let someone else fill in and learn the ropes of the everyday stuff. This is the weekend my son needs to have some one-on-one time with his grandpa so that Pepaw doesn't forget who he is.
Here's the second debate:
• I need to make sure he's out doing stuff HE wants to do every day.
• Hey, Pepaw is probably trying to find a polite way to say, "Hey, I need a vacation. I want to watch TV all day."
And there are a dozen more arguments that are trying to hold me captive.
I now realize the source of and solution to my guilt: love.
In two months, I've truly fallen in love with this man. I'm closer now to him than at any other time in the 36 years we've known each other, including the last 31 as his daughter-in-law. Sure, I'd given him hugs when we'd see each other after long separations and when it was time to say goodbye. Now I give him a hug every day I see him because he's become very special to me, more than just my dad-in-law.
I tell him every time I see him that I love him. And he tells me the same.
I care about his everyday life and want to be sure he eats properly and gets his medication. I've endured uncomfortable nights in a rocker-recliner so I could be close by during his first nights in new places, so that he wouldn't be confused or lost or unable to find his way to the bathroom at 3 a.m. I've helped him shower and made sure he had clean clothes. I've taken him to doctors' appointments and tried to ask all the right questions so he gets the best care. I've sat in bowling alleys and bought him cigarettes.
And just like every caring caregiver I've ever met, I do it because I love him. I want him to be happy, healthy, comfortable and pain-free. This is what we do for our loved ones. Hence, the name.
My guilt is now eased by the knowledge that I will come back after a few days away refreshed and more alert to meet his ongoing needs. That is how I will become a better caregiver by giving myself some care.
And by golly, I'm worth it! Pepaw tells me so!
Thursday, June 24, 2010
Caregiving: Cigarettes will be the death of me - part 3
Final note about Pepaw and his smoking for NOW …
After we exit the convenience store without any cigarettes, I take a deep breath and use every bit of energy to not explode at my dad-in-law. Pepaw could not understand what I thought was a very simple concept about price in the store. Wisely, I had given up because I reminded myself he'd never get it because of his dementia. It's not his fault. So, we leave without purchasing anything and get back into my car that was suffocating on this miserable muggy day.
It was just one of those days when I didn't have much patience. We all have them. At least I could admit it to myself. Maybe I'll cool off in more ways than one if we go back to his residence and have some lemonade so that I can leave him on a good note.
I turn the key and nothing. No sound, no roar of the engine, no air conditioning springing to life. Nothing again and again and again …
"What's wrong?" Pepaw asks.
"I don't know. It's never done this before."
As if I know what I'm looking at, I raise the hood and glance inside at the engine. Pepaw was still in the car. I make the nicest offer I can to a man who had been a car mechanic much of his life.
"Do you want to look at it?"
He nods, steps outside and peers inside. After not wiggling any wires, he says it could be the battery, but he doesn't really know. I appreciate his honesty. I felt it was important to ask his opinion because it may have sparked some mechanical memory. It didn't.
I call my husband Roger and explain the situation. He'll drive over. Done. Pepaw tells me he's gonna walk across the gas station grounds toward the road and smoke a cigarette there. Noooooooo … I ask him to just stand behind the car. He nods and lights up.
Let's see, a woman standing alongside her car with the hood up and an elderly man smoking while leaning on the trunk … Six men ask if I need help. How nice! I thank them and reassure them my husband will arrive shortly.
Then Roger calls and is unsure where I am. I quietly shout because I've lost my cool completely, and it's not a very pleasant conversation. He finally arrives, and we decide to take his dad back to his apartment to get him out of the heat. We discover that the car battery is deader than dead, way before the warranty is up. Roger and I apologize to each other and even laugh about the things I'm doing for HIS father and those damn cigarettes.
The next day I do the smart thing and buy a carton of cigarettes out of Pepaw's checking account and hide it in my trunk. I give Pepaw one pack, and his first question: "How much was it?"
"Just $4."
He says okay and smiles. He pulls out his wallet. I wave him to stop.
"Don't worry. You can pay me later."
"Thank you, darlin'."
I'm counting on him to forget and on me to remember to always have a pack stashed.
I later tell my mom what had happened, and she understands: she still smokes a couple cigarettes a day, but never around me when I see her. However, I make one thing perfectly clear:
"If I should need to care for you someday, I don't care how much you beg me for cigarettes, I'm slapping a nicotine patch on you!"
And we choose to laugh. It helps to clear the air.
After we exit the convenience store without any cigarettes, I take a deep breath and use every bit of energy to not explode at my dad-in-law. Pepaw could not understand what I thought was a very simple concept about price in the store. Wisely, I had given up because I reminded myself he'd never get it because of his dementia. It's not his fault. So, we leave without purchasing anything and get back into my car that was suffocating on this miserable muggy day.
It was just one of those days when I didn't have much patience. We all have them. At least I could admit it to myself. Maybe I'll cool off in more ways than one if we go back to his residence and have some lemonade so that I can leave him on a good note.
I turn the key and nothing. No sound, no roar of the engine, no air conditioning springing to life. Nothing again and again and again …
"What's wrong?" Pepaw asks.
"I don't know. It's never done this before."
As if I know what I'm looking at, I raise the hood and glance inside at the engine. Pepaw was still in the car. I make the nicest offer I can to a man who had been a car mechanic much of his life.
"Do you want to look at it?"
He nods, steps outside and peers inside. After not wiggling any wires, he says it could be the battery, but he doesn't really know. I appreciate his honesty. I felt it was important to ask his opinion because it may have sparked some mechanical memory. It didn't.
I call my husband Roger and explain the situation. He'll drive over. Done. Pepaw tells me he's gonna walk across the gas station grounds toward the road and smoke a cigarette there. Noooooooo … I ask him to just stand behind the car. He nods and lights up.
Let's see, a woman standing alongside her car with the hood up and an elderly man smoking while leaning on the trunk … Six men ask if I need help. How nice! I thank them and reassure them my husband will arrive shortly.
Then Roger calls and is unsure where I am. I quietly shout because I've lost my cool completely, and it's not a very pleasant conversation. He finally arrives, and we decide to take his dad back to his apartment to get him out of the heat. We discover that the car battery is deader than dead, way before the warranty is up. Roger and I apologize to each other and even laugh about the things I'm doing for HIS father and those damn cigarettes.
The next day I do the smart thing and buy a carton of cigarettes out of Pepaw's checking account and hide it in my trunk. I give Pepaw one pack, and his first question: "How much was it?"
"Just $4."
He says okay and smiles. He pulls out his wallet. I wave him to stop.
"Don't worry. You can pay me later."
"Thank you, darlin'."
I'm counting on him to forget and on me to remember to always have a pack stashed.
I later tell my mom what had happened, and she understands: she still smokes a couple cigarettes a day, but never around me when I see her. However, I make one thing perfectly clear:
"If I should need to care for you someday, I don't care how much you beg me for cigarettes, I'm slapping a nicotine patch on you!"
And we choose to laugh. It helps to clear the air.
Wednesday, June 23, 2010
Caregiving: Cigarettes will be the death of me - part 2
More about Pepaw and his cigarettes that drive me crazy …
Last week, he wasn't content with the prices at one store and was sure there other places to get them cheaper. I was tired, it was hot outside, but I felt like I had to get him his damn cigarettes. I could change the subject on any other topic and redirect him, but not his smokes.
I park at a convenience store, that I privately vow will be our last stop for the day. Inside, he wants to look at all the offerings behind the counter, and I patiently point out the prices. I ask the gal, "What's your cheapest pack?" She was polite and rattled off a few brands. He still wasn't sold. So, I gently guided him away from the counter to allow other customers to go ahead of us. I point up to advertisements hanging from the ceiling.
"That one is $3.85 a pack or $36.50 a carton. It's cheaper to get the carton. Do you want to do that?"
"No, that's too much."
"Pepaw, cigarettes are expensive everywhere. You can save a little bit by buying a carton and getting 10. That makes each pack $3.65. You save 20 cents each."
"No." He shakes his head. "That's more than $3.85."
"No, it's $3.65 if you buy the carton …"
I realized that dementia had erased my dad-in-law's once remarkable merchant math skills. He saw what he saw, no matter how many people told him otherwise.
The battery to his internal calculator had burned out.
I decided the battle was over for the day. I just wanted to drop him off at his residence and go home to my own. I needed to recharge my own batteries.
So, out into the heat we went again where all my plans went up in smoke …
To be continued tomorrow.
Last week, he wasn't content with the prices at one store and was sure there other places to get them cheaper. I was tired, it was hot outside, but I felt like I had to get him his damn cigarettes. I could change the subject on any other topic and redirect him, but not his smokes.
I park at a convenience store, that I privately vow will be our last stop for the day. Inside, he wants to look at all the offerings behind the counter, and I patiently point out the prices. I ask the gal, "What's your cheapest pack?" She was polite and rattled off a few brands. He still wasn't sold. So, I gently guided him away from the counter to allow other customers to go ahead of us. I point up to advertisements hanging from the ceiling.
"That one is $3.85 a pack or $36.50 a carton. It's cheaper to get the carton. Do you want to do that?"
"No, that's too much."
"Pepaw, cigarettes are expensive everywhere. You can save a little bit by buying a carton and getting 10. That makes each pack $3.65. You save 20 cents each."
"No." He shakes his head. "That's more than $3.85."
"No, it's $3.65 if you buy the carton …"
I realized that dementia had erased my dad-in-law's once remarkable merchant math skills. He saw what he saw, no matter how many people told him otherwise.
The battery to his internal calculator had burned out.
I decided the battle was over for the day. I just wanted to drop him off at his residence and go home to my own. I needed to recharge my own batteries.
So, out into the heat we went again where all my plans went up in smoke …
To be continued tomorrow.
Tuesday, June 22, 2010
Caregiving: Cigarettes will be the death of me - part 1
If you smoke, I'll warn you right now that this note will likely offend you.
And I ain't gonna apologize.
I can't stand smoking. Cigarette smoke gives me headaches, often migraines. I cheered when Illinois basically went smokeless two years ago. There were places my husband and I never went because of smoke, and now we could go in breathing peace.
Ah, the good life, finally.
Then the universe decided to have the last laugh by giving me the challenge of caregiving for my dad-in-law who smokes.
I lived on migraine pills the April day we packed up Pepaw's belongings in Florida to bring him up here. Every time we stopped for gas, he had to take a smoke break. Everything was unloaded in our garage because I refused to allow that stinky stuff into my house. That was one reason why I bought him all new clothes, which was simply a half dozen t-shirts and a couple pairs of jeans, because that's just who Pepaw is, a very casual man.
He lived with us for 10 days, and we trained him to smoke outside on our porch and drop his butts into a pot of dirt. When we moved him to a retirement center, we showed him where to go outside to smoke. That wasn't always successful because sometimes he'd go elsewhere on the property and deposit his butts among the foliage. I stood right there one day and said, "Give it to me," but he flipped it inside the shrubs anyway. I wanted to scream!
I hate dementia as much as smoking, and when the two intertwine, it ignites a whole new rage inside me … and I just come home and beat my head against a pillow.
Pepaw's dementia also bursts into full bloom when we take him into a store, and he can't understand why cigarettes are so expensive … at least compared to what he remembers, and Lord only knows what year that is. I flat out told him one day that the taxes are so high to encourage people to stop smoking and we'll have a healthier world. That explanation went right over his head and reminded me that logic is simply a waste of time and energy.
Hey, I'm human, and sometimes I forget that reality of dementia.
Last week …
To be continued tomorrow.
And I ain't gonna apologize.
I can't stand smoking. Cigarette smoke gives me headaches, often migraines. I cheered when Illinois basically went smokeless two years ago. There were places my husband and I never went because of smoke, and now we could go in breathing peace.
Ah, the good life, finally.
Then the universe decided to have the last laugh by giving me the challenge of caregiving for my dad-in-law who smokes.
I lived on migraine pills the April day we packed up Pepaw's belongings in Florida to bring him up here. Every time we stopped for gas, he had to take a smoke break. Everything was unloaded in our garage because I refused to allow that stinky stuff into my house. That was one reason why I bought him all new clothes, which was simply a half dozen t-shirts and a couple pairs of jeans, because that's just who Pepaw is, a very casual man.
He lived with us for 10 days, and we trained him to smoke outside on our porch and drop his butts into a pot of dirt. When we moved him to a retirement center, we showed him where to go outside to smoke. That wasn't always successful because sometimes he'd go elsewhere on the property and deposit his butts among the foliage. I stood right there one day and said, "Give it to me," but he flipped it inside the shrubs anyway. I wanted to scream!
I hate dementia as much as smoking, and when the two intertwine, it ignites a whole new rage inside me … and I just come home and beat my head against a pillow.
Pepaw's dementia also bursts into full bloom when we take him into a store, and he can't understand why cigarettes are so expensive … at least compared to what he remembers, and Lord only knows what year that is. I flat out told him one day that the taxes are so high to encourage people to stop smoking and we'll have a healthier world. That explanation went right over his head and reminded me that logic is simply a waste of time and energy.
Hey, I'm human, and sometimes I forget that reality of dementia.
Last week …
To be continued tomorrow.
Sunday, June 20, 2010
One puff and he took our breath away
At first, I worried about my dad-in-law's desire to just sit in a cozy chair in the yard by himself. But I quickly reversed my fear of Pepaw being "alone." Amid the crowd of two dozen, he could be "involved," yet keep his usual comfortable distance.
Just give the man a pack of cigarettes, a working lighter, sunshine and shade, and he was content. He was happy. He was smiling. He was entitled.
After all, it was his 84th birthday. He was gracious enough to ride four hours to go to my dad and step-mom's house for a family gathering overflowing with strangers. My dad came up to Pepaw as he got out of the van and extended his hand in greeting, "Remember me?" Pepaw shook hands, smiled, chuckled and nodded toward me. Yep, he knew there was a connection … though it may have been my occasional coaching during the long drive: "We're going to my dad's …"
You do the best you can to prepare someone who has dementia. With Pepaw, he could have bluffed his way through anything with his charming smile, and no matter what happens, you make the pledge to not worry.
My step-mom and I had planned for her to get a birthday cake for Pepaw and two other guests who were also celebrating birthdays this week. As my son — one of the other honorees — and my step-mom lit 10 candles, we called Pepaw over and wished him a happy birthday. He simply smiled and accepted a couple of cards as we asked him to blow out the candles.
He took off his hat, took a deep breath and in one targeted blow, extinguished all 10 lights simultaneously. He accepted the cheers and applause graciously.
Not bad, not bad at all for a guy who's smoked most of his 84 years. After donning his cap, he went back to his chair to continue to marvel at the blue sky and the artistry of sparse clouds and smoke another cigarette.
Yes, his one puff took our breath away.
Just give the man a pack of cigarettes, a working lighter, sunshine and shade, and he was content. He was happy. He was smiling. He was entitled.
After all, it was his 84th birthday. He was gracious enough to ride four hours to go to my dad and step-mom's house for a family gathering overflowing with strangers. My dad came up to Pepaw as he got out of the van and extended his hand in greeting, "Remember me?" Pepaw shook hands, smiled, chuckled and nodded toward me. Yep, he knew there was a connection … though it may have been my occasional coaching during the long drive: "We're going to my dad's …"
You do the best you can to prepare someone who has dementia. With Pepaw, he could have bluffed his way through anything with his charming smile, and no matter what happens, you make the pledge to not worry.
My step-mom and I had planned for her to get a birthday cake for Pepaw and two other guests who were also celebrating birthdays this week. As my son — one of the other honorees — and my step-mom lit 10 candles, we called Pepaw over and wished him a happy birthday. He simply smiled and accepted a couple of cards as we asked him to blow out the candles.
He took off his hat, took a deep breath and in one targeted blow, extinguished all 10 lights simultaneously. He accepted the cheers and applause graciously.
Not bad, not bad at all for a guy who's smoked most of his 84 years. After donning his cap, he went back to his chair to continue to marvel at the blue sky and the artistry of sparse clouds and smoke another cigarette.
Yes, his one puff took our breath away.
Friday, June 18, 2010
Alzheimer's: who's your banker?
As my husband Roger and I have ridden the learning curve rollercoaster while caring for his dad, we've accepted one fact: Pepaw isn't so good with numbers anymore.
Thanks to Alzheimer's, Pepaw's checkbook was waaaaaayyyyy off by thousands of dollars, though luckily he had more than he thought. We were able to figure out his banking situation and narrow down his accounts to two financial institutions in Florida, where he had lived for 18 years.
We could tell him how much he had, but he vehemently disagreed as he pulled out a two-year old bank receipt showing a completely outdated figure. We thought he'd be happy to hear he had more than that old amount. Nope. Wouldn't accept our word so we gave up. Let him think what he wants.
However, we were confused when he kept talking about having some money in another bank that we hadn't heard of. Pepaw was adamant he had money in this other institution, but we found no statements or any documents of such a bank.
I kept trying to solve this mystery and finally figured it out the other day while reading online news.
Yep, Pepaw was right: his money was in the bank of Bernanke.
Federal Reserve Chairman Ben Bernanke.
Another thing off my to-do list!
Thanks to Alzheimer's, Pepaw's checkbook was waaaaaayyyyy off by thousands of dollars, though luckily he had more than he thought. We were able to figure out his banking situation and narrow down his accounts to two financial institutions in Florida, where he had lived for 18 years.
We could tell him how much he had, but he vehemently disagreed as he pulled out a two-year old bank receipt showing a completely outdated figure. We thought he'd be happy to hear he had more than that old amount. Nope. Wouldn't accept our word so we gave up. Let him think what he wants.
However, we were confused when he kept talking about having some money in another bank that we hadn't heard of. Pepaw was adamant he had money in this other institution, but we found no statements or any documents of such a bank.
I kept trying to solve this mystery and finally figured it out the other day while reading online news.
Yep, Pepaw was right: his money was in the bank of Bernanke.
Federal Reserve Chairman Ben Bernanke.
Another thing off my to-do list!
Wednesday, June 16, 2010
She was still a caregiver
I came across something I had jotted January 7 of this year. Settling into my snowy, frigid car after leaving the hospital room of my dear friend, Molly, I remember the need to quickly transfer the emotions from my heart onto paper, to capture what I had just witnessed …
She watches and listens to the IV machine pump fluid into her body. Finally, she rests for a little while or at least closes her tired eyes, though you know her brain keeps pace with every rhythmic drop.
She's a caregiver, the spouse of an Alzheimer's patient who now resides in a care facility. His day-to-day care, though he is ambulatory, became too much for her and the family, and they made that difficult decision to place him in a nursing home.
Believe it or not, some people think she's NOT a caregiver anymore now that he is under the 24/7 eye of a facility. But she IS and will continue to be until he draws his last breath. She visits every day, makes sure his medical needs are met, sorts and makes sense of endless and redundant paperwork, and writes that expensive check every month for his care.
Most important, she loves him and shows him that every time she visits … whether she's laughs at his smile or cries in grief at his horrifyingly slow decline.
However, she's an exhausted caregiver, one whose own needs have gone unmet, albeit unintentionally, because she was consumed with worry and his care. She has a devoted family and circle of friends that have pitched in and assisted wherever possible …
My mini-essay ended there. I didn't finish it because Molly passed away two days later as she no longer had the energy to sustain her weakened body.
I can't believe Molly has been gone five months, exactly five months to the day on my birthday last week. My heart still aches at times missing our almost daily phone conversations. I know we'd be talking even more as I have now become an Alzheimer's caregiver for my dad-in-law, Pepaw.
But we wouldn't have depressed ourselves with talking Alzheimer's all the time. No, we would have laughed and talked about LIFE!
Oh, Molly, you would have loved Pepaw! You would have hit it off with this soft-spoken, sweet talkin' Tennessee native immediately! You would have engaged him in conversation just to hear his voice! And I would have smiled listening to the two of you yak the afternoon away …
Oh, Molly, what advice have you been whispering in my ear? Have I been paying attention?
I think it was your voice I heard two Sundays ago when I suddenly knew I HAD to take a day off, that my husband Roger needed to check on his dad and make sure he was eating properly. I had to give myself permission to take Alzheimer's off my to-do list for the day.
And I'm positive I heard it the other day when I checked on Pepaw after lunch. I thought he might want to leave his retirement center for a while and go shopping, but no, he said he was just going to watch TV for the afternoon. I asked if he was sure, and he reassured me with a smile that he was going to take it easy.
So I took it easy, too, and didn't feel guilty because Molly told me it was OK.
I cannot begin to compare what I have experienced in six weeks with what Molly experienced in six years, or what her incredible family continues to cope with today in caring for her beloved Joe.
But the most valuable lesson she taught me was to take care of yourself from the beginning … if YOU want to survive your loved one who has the Alzheimer's. That damn disease doesn't care who else it destroys in the process.
That's become my battle cry since Molly passed away, to educate every caregiver and family facing any catastrophic illness or injury, to pound these messages into them:
Take care of yourself!
Forgive yourself!
YOU cannot do everything yourself!
Nobody will do something as well or perfect as YOU, but it's OK to let them try!
Ask for help!
Accept help!
It's OK to be human!
It's OK to love yourself as much as your loved one!
That gives ME the energy for the coming days. That gives ME permission to be ME.
That's who Roger needs so WE can do this together.
That's who Pepaw needs.
That's who I need.
She watches and listens to the IV machine pump fluid into her body. Finally, she rests for a little while or at least closes her tired eyes, though you know her brain keeps pace with every rhythmic drop.
She's a caregiver, the spouse of an Alzheimer's patient who now resides in a care facility. His day-to-day care, though he is ambulatory, became too much for her and the family, and they made that difficult decision to place him in a nursing home.
Believe it or not, some people think she's NOT a caregiver anymore now that he is under the 24/7 eye of a facility. But she IS and will continue to be until he draws his last breath. She visits every day, makes sure his medical needs are met, sorts and makes sense of endless and redundant paperwork, and writes that expensive check every month for his care.
Most important, she loves him and shows him that every time she visits … whether she's laughs at his smile or cries in grief at his horrifyingly slow decline.
However, she's an exhausted caregiver, one whose own needs have gone unmet, albeit unintentionally, because she was consumed with worry and his care. She has a devoted family and circle of friends that have pitched in and assisted wherever possible …
My mini-essay ended there. I didn't finish it because Molly passed away two days later as she no longer had the energy to sustain her weakened body.
I can't believe Molly has been gone five months, exactly five months to the day on my birthday last week. My heart still aches at times missing our almost daily phone conversations. I know we'd be talking even more as I have now become an Alzheimer's caregiver for my dad-in-law, Pepaw.
But we wouldn't have depressed ourselves with talking Alzheimer's all the time. No, we would have laughed and talked about LIFE!
Oh, Molly, you would have loved Pepaw! You would have hit it off with this soft-spoken, sweet talkin' Tennessee native immediately! You would have engaged him in conversation just to hear his voice! And I would have smiled listening to the two of you yak the afternoon away …
Oh, Molly, what advice have you been whispering in my ear? Have I been paying attention?
I think it was your voice I heard two Sundays ago when I suddenly knew I HAD to take a day off, that my husband Roger needed to check on his dad and make sure he was eating properly. I had to give myself permission to take Alzheimer's off my to-do list for the day.
And I'm positive I heard it the other day when I checked on Pepaw after lunch. I thought he might want to leave his retirement center for a while and go shopping, but no, he said he was just going to watch TV for the afternoon. I asked if he was sure, and he reassured me with a smile that he was going to take it easy.
So I took it easy, too, and didn't feel guilty because Molly told me it was OK.
I cannot begin to compare what I have experienced in six weeks with what Molly experienced in six years, or what her incredible family continues to cope with today in caring for her beloved Joe.
But the most valuable lesson she taught me was to take care of yourself from the beginning … if YOU want to survive your loved one who has the Alzheimer's. That damn disease doesn't care who else it destroys in the process.
That's become my battle cry since Molly passed away, to educate every caregiver and family facing any catastrophic illness or injury, to pound these messages into them:
Take care of yourself!
Forgive yourself!
YOU cannot do everything yourself!
Nobody will do something as well or perfect as YOU, but it's OK to let them try!
Ask for help!
Accept help!
It's OK to be human!
It's OK to love yourself as much as your loved one!
That gives ME the energy for the coming days. That gives ME permission to be ME.
That's who Roger needs so WE can do this together.
That's who Pepaw needs.
That's who I need.
Friday, June 4, 2010
Learning to care for someone you really don't know
He was ALWAYS quiet. A long conversation with Pepaw was three minutes. The longest conversation I ever had with my father-in-law was nearly two decades ago when I tried to soothe things over when he disapproved of his youngest daughter's boyfriend.
That talk lasted MAYBE seven minutes. While we stood in his garage, it was the first time he had spoken about what he was FEELING. And I don't remember another "feeling" conversation before or after, even when my mom-in-law, Meemaw, died in 2000. He didn't even say much when he drove me to the airport the last time I visited them in Florida before she passed away. I had been crying all morning, knowing I'd never see her again, and I tried so hard to dry my tears. When he dropped me off and I told him I loved him, he smiled, hugged me and said, "It'll be all right, darling."
After my mom-in-law passed away, I tried for a couple of months to call him at least once a week, but it was a struggle to get more than five or six words out of him. There was always a lot of "dead air," and we all know how uncomfortable that can be. I kept reminding my husband Roger to call his dad to keep the communication going because I've learned that guys can "BS" their way through a conversation without saying much of anything … (And I say that with great love and admiration.)
So, I have to admit that I didn't see Pepaw much this past decade except for the trips I made down there to visit everyone in Roger's family. I couldn't stay overnight at his home because his smoking gave me even bigger migraines than when he and Meemaw used to smoke constantly. We still didn't say much, but on the way to a flea market one day, he told me, when I asked, how his breakfast as a child was a biscuit because his family was so poor …
For five weeks now, since he came to Peoria for us to care for him, I've been studying this man, my husband's father, my son's grandfather, Pepaw. Suddenly, I was responsible for much of his personal and financial care as we begin this journey through Alzheimer's together … and I really knew nothing about him.
I've interviewed probably thousands of people in my career as a journalist and author. But Pepaw … I didn't even know what questions to ask, so I had to observe his behavior and actions and listen when HE decided to speak. He lived in our home for about 10 days before we found a comfortable senior residence to give him his own place and get him around people after he had lived alone for a decade.
I discovered a man who didn't ask for ANYTHING. He thanked us for EVERYTHING, including the scrambled eggs and bacon Roger or I fixed him nearly every morning he was here, as he dutifully ate every bite in silence while reading the newspaper. I knew he wouldn't be talkative because he had eaten alone for years. I got past my distaste for the smell of coffee and made him a fresh cup or two every day. Add a sweet roll and he was in heaven as he softly said, "Thanks, darling."
Though he had packed two bags of his clothing, he said nothing when I didn't even open the smokey suitcases and left them in the garage to air out. He said, "Thanks, darling," as he accepted all new underwear, socks, T-shirts and jeans. We pried away a weathered jacket and let him wear my hooded sweatshirts. He wore those for the first four weeks because he wasn't used to the cold weather here … at least compared to Florida. And that's how he slept … in his clothes, and a hooded sweatshirt pulled up over his cap … not stirring all night long when I frequently checked on him.
I knew he was comfortable, and he didn't have to say a thing to teach me volumes about him.
Just by opening my eyes and heart, I learned that all he needed was someone to take care of him every day … without him ever having to ask or perhaps even fully comprehending — because of the Alzheimer's — that he needed assistance. I explained to two of my sisters-in-law that they shouldn't feel guilty about not recognizing his decline sooner, because Pepaw was always a man of few words and the guy who slept in his clothing for a couple of days. They would have had to spend 24/7 with him as Roger and I did for a couple of weeks to realize something was "not right" and exactly what was "wrong."
And that's how the evil of Alzheimer's infiltrates our lives … It steals our loved ones a tiny piece at a time, like pieces of puzzle that fall off the table and are devoured by dust bunnies and never seen again. We don't really see the missing parts until the whole picture comes clearer into focus …
Pardon me while I wipe my eyes … so I can better see what Pepaw needs today. A cup of coffee? A hug? Coming right up!
That talk lasted MAYBE seven minutes. While we stood in his garage, it was the first time he had spoken about what he was FEELING. And I don't remember another "feeling" conversation before or after, even when my mom-in-law, Meemaw, died in 2000. He didn't even say much when he drove me to the airport the last time I visited them in Florida before she passed away. I had been crying all morning, knowing I'd never see her again, and I tried so hard to dry my tears. When he dropped me off and I told him I loved him, he smiled, hugged me and said, "It'll be all right, darling."
After my mom-in-law passed away, I tried for a couple of months to call him at least once a week, but it was a struggle to get more than five or six words out of him. There was always a lot of "dead air," and we all know how uncomfortable that can be. I kept reminding my husband Roger to call his dad to keep the communication going because I've learned that guys can "BS" their way through a conversation without saying much of anything … (And I say that with great love and admiration.)
So, I have to admit that I didn't see Pepaw much this past decade except for the trips I made down there to visit everyone in Roger's family. I couldn't stay overnight at his home because his smoking gave me even bigger migraines than when he and Meemaw used to smoke constantly. We still didn't say much, but on the way to a flea market one day, he told me, when I asked, how his breakfast as a child was a biscuit because his family was so poor …
For five weeks now, since he came to Peoria for us to care for him, I've been studying this man, my husband's father, my son's grandfather, Pepaw. Suddenly, I was responsible for much of his personal and financial care as we begin this journey through Alzheimer's together … and I really knew nothing about him.
I've interviewed probably thousands of people in my career as a journalist and author. But Pepaw … I didn't even know what questions to ask, so I had to observe his behavior and actions and listen when HE decided to speak. He lived in our home for about 10 days before we found a comfortable senior residence to give him his own place and get him around people after he had lived alone for a decade.
I discovered a man who didn't ask for ANYTHING. He thanked us for EVERYTHING, including the scrambled eggs and bacon Roger or I fixed him nearly every morning he was here, as he dutifully ate every bite in silence while reading the newspaper. I knew he wouldn't be talkative because he had eaten alone for years. I got past my distaste for the smell of coffee and made him a fresh cup or two every day. Add a sweet roll and he was in heaven as he softly said, "Thanks, darling."
Though he had packed two bags of his clothing, he said nothing when I didn't even open the smokey suitcases and left them in the garage to air out. He said, "Thanks, darling," as he accepted all new underwear, socks, T-shirts and jeans. We pried away a weathered jacket and let him wear my hooded sweatshirts. He wore those for the first four weeks because he wasn't used to the cold weather here … at least compared to Florida. And that's how he slept … in his clothes, and a hooded sweatshirt pulled up over his cap … not stirring all night long when I frequently checked on him.
I knew he was comfortable, and he didn't have to say a thing to teach me volumes about him.
Just by opening my eyes and heart, I learned that all he needed was someone to take care of him every day … without him ever having to ask or perhaps even fully comprehending — because of the Alzheimer's — that he needed assistance. I explained to two of my sisters-in-law that they shouldn't feel guilty about not recognizing his decline sooner, because Pepaw was always a man of few words and the guy who slept in his clothing for a couple of days. They would have had to spend 24/7 with him as Roger and I did for a couple of weeks to realize something was "not right" and exactly what was "wrong."
And that's how the evil of Alzheimer's infiltrates our lives … It steals our loved ones a tiny piece at a time, like pieces of puzzle that fall off the table and are devoured by dust bunnies and never seen again. We don't really see the missing parts until the whole picture comes clearer into focus …
Pardon me while I wipe my eyes … so I can better see what Pepaw needs today. A cup of coffee? A hug? Coming right up!
Wednesday, May 26, 2010
Alzheimer's has knocked upon my door
I wished more than anything that I had been wrong, but I wasn't. I knew too much, but not nearly enough.
As my dad-in-law interacted with the geriatric team last week, my heart ached with every answer he uttered, and my brain quietly tallied his correct and incorrect responses. It took every reserve of energy within me to not jump up and shout, "You know this! C'mon, Pepaw! Get with the program! Prove me wrong!"
Please, please, prove me wrong …
Alzheimer's has knocked upon my door.
I had to let the diagnosis soak in, that Pepaw has Alzheimer's. I had to invite my husband Roger to lunch to tell him the results in person. I hated just saying, "Yes, it's Alzheimer's," over the phone. He knew the answer before he even scooted into the passenger seat of my car. Why else would I make that invitation on this particular day? We talked about it over lunch while it rained outside. Only once did he wipe his eyes and say, "Now, don't make me cry …"
Thankfully we smiled. It was all we could do. I think it was a smile of relief, that we had an answer, that we could prepare for the next question.
Of course, we'll likely never get THE answer to THE question: why?
Yes, Alzheimer's has knocked upon my door … my brain … my heart … my soul.
Everything I've witnessed and learned about Alzheimer's … everything I've written and presented to audiences about coping with this horrific disease … I have to believe it was God's way of preparing me for this day, this news, this journey.
I'm right here with you, Pepaw, ready to be your caregiver, a steady arm when you need it, a pair of eyes willing to look deep within yours when we speak … ready to be the girl you've always called Monty …
Ready to be your memory … no matter how hard Alzheimer's pounds upon our door.
Sunday, May 9, 2010
For Mother's Day, my husband gave me his dad
As Mother's Day 2010 dawns, I look over at my sleeping husband. He really outdid himself this year for my gift: he gave me his dad to help care for.
And I'm smiling because it's probably the best gift of love he's ever extended, other than bestowing the title of mother on me with our now 27-year-old son. Actually, having his dad live with us, because he could no longer live by himself 1,200 miles away, is a gift we've given each other. I'm not denying for a moment that it's been a huge adjustment in our lives to bring his dad here to Peoria.
Yet, without ceremony but with love, I've donned the title of "caregiver."
It's been about two weeks now that we've been responsible for meeting my dad-in-law's day-to-day needs. I've learned how to make coffee and endure an aroma I've never really cared for. I've learned how to finish the scrambled eggs just as the toast pops out of the toaster. I've learned how to time a meal just right based on when he says he's not hungry but 15 minutes later is.
I've learned how to find a new doctor and pull together enough of a health history so the friendly physician has a starting point. I've learned how to navigate medical insurance and question the medication he's been on. I've learned how to speak concisely and loudly as we await the arrival of the hearing aids that we thought we had packed.
I've learned my dad-in-law's strengths and weaknesses and how to work on each. I've learned the things I need to push and the things I need to allow him to do on his own schedule. I've learned more about him in two weeks than I have in the 31 years I've known him as the father of the man I love and married.
Part of me is relieved that we've now found a senior community for him to live just five minutes from us. He needs to socialize with people his own age to thrive, after he's lived alone 10 years since my mom-in-law passed away. We weighed the options carefully and knew we had to try this for HIS welfare.
Yet, a greater part of me is sad that the TV won't be blaring all the crime dramas several hours a day and he won't be shuffling out the door to smoke on the porch and thanking me with a warm smile when I check on him and he says, "I'm fine."
Oops, time to run! Got to get moving to make coffee and muffins for both my men.
Yes, for Mother's Day, my husband gave me a new and meaningful reason to get up every morning. I love you!
And I'm smiling because it's probably the best gift of love he's ever extended, other than bestowing the title of mother on me with our now 27-year-old son. Actually, having his dad live with us, because he could no longer live by himself 1,200 miles away, is a gift we've given each other. I'm not denying for a moment that it's been a huge adjustment in our lives to bring his dad here to Peoria.
Yet, without ceremony but with love, I've donned the title of "caregiver."
It's been about two weeks now that we've been responsible for meeting my dad-in-law's day-to-day needs. I've learned how to make coffee and endure an aroma I've never really cared for. I've learned how to finish the scrambled eggs just as the toast pops out of the toaster. I've learned how to time a meal just right based on when he says he's not hungry but 15 minutes later is.
I've learned how to find a new doctor and pull together enough of a health history so the friendly physician has a starting point. I've learned how to navigate medical insurance and question the medication he's been on. I've learned how to speak concisely and loudly as we await the arrival of the hearing aids that we thought we had packed.
I've learned my dad-in-law's strengths and weaknesses and how to work on each. I've learned the things I need to push and the things I need to allow him to do on his own schedule. I've learned more about him in two weeks than I have in the 31 years I've known him as the father of the man I love and married.
Part of me is relieved that we've now found a senior community for him to live just five minutes from us. He needs to socialize with people his own age to thrive, after he's lived alone 10 years since my mom-in-law passed away. We weighed the options carefully and knew we had to try this for HIS welfare.
Yet, a greater part of me is sad that the TV won't be blaring all the crime dramas several hours a day and he won't be shuffling out the door to smoke on the porch and thanking me with a warm smile when I check on him and he says, "I'm fine."
Oops, time to run! Got to get moving to make coffee and muffins for both my men.
Yes, for Mother's Day, my husband gave me a new and meaningful reason to get up every morning. I love you!
Wednesday, April 7, 2010
"You must write it in first person … your experience …"
The introduction to my new book that will be released this spring …
Why I Had to Write This Book
After Thanksgiving 2003, I sit at the coffee shop with my friend. While she sips a flavored brew, I nurse icy lemonade and stare at the piles of paper I had brought to share with her.
I called her because I’m frustrated, confused and tired. I can’t make sense out of hundreds of my handwritten and typed pages, and my mind swirls with enough words for a thousand sheets more.
However, more important, I can’t find my focus, voice, purpose in organizing and writing a book about the Holocaust and War Victims Tracing Center of the American Red Cross. It’s too emotional, I explain. I cannot write objectively about the Holocaust and its shocking history, the Red Cross program and all the individuals I have encountered. I confess that I have been changed by this process, and I continue to evolve. I believe that I am a better person because of this, and that’s why I’m writing this book.
After she challenges me to look deeper within myself for the answers, I cannot fend off the tears, which had been building within me for months as I have agonized over this project.
She pats my hand.
“I can go out and buy any book I want or need about the Holocaust. There’s a ton of them out there. How is your book different?”
No one had asked me that. Even I had not stopped long enough to pose that question. Before I can scribble or type one more word, I have to know and be confident of the answer or give it all up now.
I explain that it’s more than the Tracing Center or the Holocaust. It’s about the journey of so many lives, including my own, and the wobbly fence between humanity and inhumanity in this world.
She smiles.
“Then you must write it in first person … your experience …”
And I have.
It’s not always easy to accept new challenges that will potentially enhance our lives and to ignore those that do not carry us further along on this journey …
But I had to, and, more important, I wanted to.
Why I Had to Write This Book
After Thanksgiving 2003, I sit at the coffee shop with my friend. While she sips a flavored brew, I nurse icy lemonade and stare at the piles of paper I had brought to share with her.
I called her because I’m frustrated, confused and tired. I can’t make sense out of hundreds of my handwritten and typed pages, and my mind swirls with enough words for a thousand sheets more.
However, more important, I can’t find my focus, voice, purpose in organizing and writing a book about the Holocaust and War Victims Tracing Center of the American Red Cross. It’s too emotional, I explain. I cannot write objectively about the Holocaust and its shocking history, the Red Cross program and all the individuals I have encountered. I confess that I have been changed by this process, and I continue to evolve. I believe that I am a better person because of this, and that’s why I’m writing this book.
After she challenges me to look deeper within myself for the answers, I cannot fend off the tears, which had been building within me for months as I have agonized over this project.
She pats my hand.
“I can go out and buy any book I want or need about the Holocaust. There’s a ton of them out there. How is your book different?”
No one had asked me that. Even I had not stopped long enough to pose that question. Before I can scribble or type one more word, I have to know and be confident of the answer or give it all up now.
I explain that it’s more than the Tracing Center or the Holocaust. It’s about the journey of so many lives, including my own, and the wobbly fence between humanity and inhumanity in this world.
She smiles.
“Then you must write it in first person … your experience …”
And I have.
It’s not always easy to accept new challenges that will potentially enhance our lives and to ignore those that do not carry us further along on this journey …
But I had to, and, more important, I wanted to.
Sunday, April 4, 2010
The parade of holiday memories
He had no idea a holiday was on its way. Alzheimer's does that to a person, robs them of the history of holidays they had always enjoyed and celebrated.
A couple of months ago, I stopped by to visit a friend with Alzheimer's at the care facility where he now resides. He doesn't know me, but it doesn't matter. He didn't know me before he was diagnosed with Alzheimer's, so I certainly didn't expect him to remember me now. I was searching for a new way to engage him in conversation, something that would connect him with the world that still revolves around him.
"St. Valentine's Day is coming up," I said. His eyebrows arched as I continued. "Yes, all the hearts, bright red hearts, candy and flowers. I bet you used to buy your wife flowers for Valentine's Day because you loved her so much."
He smiled and nodded. "Yes, yes."
Hmm, I thought, why not march him through a parade of holidays and seasons.
"Then it will be spring. All the beautiful flowers will start to bloom. And then it will be Easter. Kids love to hunt for Easter eggs. And there was a song called 'Easter Parade.' " Well, he didn't break into song, but he was still maintaining eye contact.
"And then Memorial Day to remember the loved ones and the soldiers who have passed away. You were a sailor in World War II, weren't you?"
"Yes, I was." He sat a little straighter, and his grin widened.
"Yes, you were. And then it gets hot and it's summer. Whew! That old sun will be coming down. And then you know what's next?"
"What?" he asked.
"The 4th of July! A great time to sing patriotic songs." I can't sing, but that didn't keep me from starting a chorus of "I'm a yankee doodle dandy" to see what would happen.
We both smiled as he sang a couple of lines. Yep, those songs can remain deep within us even in the depths of Alzheimer's.
I continued the journey through the calendar … past Labor Day, fall, Thanksgiving and Christmas. I wish now that I had initiated another song for that day but knew his attention span might be coming to an end.
"Then it's Happy New Year! And last week, you know what happened?"
"What?"
"That ground hog saw his shadow, and we've got six more weeks of winter."
"He did?"
"Yep, he did."
He smiled and then looked at his surroundings again, the activity room where others sat, paced, talked or slept … each in their own world controlled by Alzheimer's.
If only we could read their minds. If we could only comprehend what they see and think. If we could only cure this damn disease.
Standing, I smiled and thanked him for allowing me to visit. He repeated "bye" when I said it. He remained in his seat as I walked down the hall.
We had taken a journey that required no transportation or luggage or tickets. In a few minutes, we had walked through a calendar year, a stroll that made him smile and sing a patriotic tune.
Yes, it was a very good year.
A couple of months ago, I stopped by to visit a friend with Alzheimer's at the care facility where he now resides. He doesn't know me, but it doesn't matter. He didn't know me before he was diagnosed with Alzheimer's, so I certainly didn't expect him to remember me now. I was searching for a new way to engage him in conversation, something that would connect him with the world that still revolves around him.
"St. Valentine's Day is coming up," I said. His eyebrows arched as I continued. "Yes, all the hearts, bright red hearts, candy and flowers. I bet you used to buy your wife flowers for Valentine's Day because you loved her so much."
He smiled and nodded. "Yes, yes."
Hmm, I thought, why not march him through a parade of holidays and seasons.
"Then it will be spring. All the beautiful flowers will start to bloom. And then it will be Easter. Kids love to hunt for Easter eggs. And there was a song called 'Easter Parade.' " Well, he didn't break into song, but he was still maintaining eye contact.
"And then Memorial Day to remember the loved ones and the soldiers who have passed away. You were a sailor in World War II, weren't you?"
"Yes, I was." He sat a little straighter, and his grin widened.
"Yes, you were. And then it gets hot and it's summer. Whew! That old sun will be coming down. And then you know what's next?"
"What?" he asked.
"The 4th of July! A great time to sing patriotic songs." I can't sing, but that didn't keep me from starting a chorus of "I'm a yankee doodle dandy" to see what would happen.
We both smiled as he sang a couple of lines. Yep, those songs can remain deep within us even in the depths of Alzheimer's.
I continued the journey through the calendar … past Labor Day, fall, Thanksgiving and Christmas. I wish now that I had initiated another song for that day but knew his attention span might be coming to an end.
"Then it's Happy New Year! And last week, you know what happened?"
"What?"
"That ground hog saw his shadow, and we've got six more weeks of winter."
"He did?"
"Yep, he did."
He smiled and then looked at his surroundings again, the activity room where others sat, paced, talked or slept … each in their own world controlled by Alzheimer's.
If only we could read their minds. If we could only comprehend what they see and think. If we could only cure this damn disease.
Standing, I smiled and thanked him for allowing me to visit. He repeated "bye" when I said it. He remained in his seat as I walked down the hall.
We had taken a journey that required no transportation or luggage or tickets. In a few minutes, we had walked through a calendar year, a stroll that made him smile and sing a patriotic tune.
Yes, it was a very good year.
Thursday, April 1, 2010
"It's a blessing"
As you get older and your circle of friends grows, you inevitably get more invitations … to visitations. That door opens wider and more frequently when you embrace a group of people with a fatal disease like Alzheimer's.
I attended the visitation yesterday for a sweet gentleman who passed away this week. I remember his smile at the support group meetings when he and his wife, his adoring and devoted caregiver, attended. When the caregivers got together separately, she'd describe the growing challenges, though never complained. Earlier in March, she grabbed our hearts as she wept and described how she had to place him in a care facility because she couldn't give him all the care he required as his disease progressed. Her children saw the toll it was taking on her and reassured her to not feel guilty.
"It was the hardest thing I've ever done," she confessed amid the tears. We listened and hugged her in hopes of giving her the strength to face the greatest challenge of not having him at home with her everyday, the man she had pledged to love, honor and cherish five decades ago.
She had not stepped away from nor forgotten that vow. She had embraced it with greater love and commitment to cherish both of their lives, to give him the 24-7 care he now needed against that relentless, brutal disease, and maintain her own health in the process. And there's not a selfish thing about that when it comes to Alzheimer's. I've watched first-hand it claim the life of one caregiver, and I never want to see that again. No family should have to experience that.
At the visitation, I arrived early and walked into the spacious sanctuary where the family organized itself into an official line, three generations alongside the open casket. When the wife saw me, she smiled and opened her arms to hug me so tight as I expressed my sympathy.
The three words she said with great love and conviction said it all:
"It's a blessing."
Her children echoed that sentiment, that he didn't have to suffer anymore, that they didn't have to watch him deteriorate further, that the faith he had instilled in them was helping carry them through this loss.
Is it inappropriate to say "It's a blessing" when someone passes away after a long illness or a sudden devastating accident? You never know just how fragile the family's emotions are, and you certainly don't want to cause them more grief when your heart has been breaking for them. As an outsider, it's easy to say, "It's a blessing." It's not your spouse, dad or grandpa. Life's experiences have taught me that you probably should keep that thought to yourself. It's best for the family to say that aloud for themselves on their own terms.
I made no apologies as I nodded when she said, "It's a blessing." They were all at peace, and I believe that makes the grief a little more tolerable, though never easy.
Alzheimer's had ravaged this gentle husband, father, grandfather and friend, and was moving on to another family ...
And tomorrow I have another visitation …
I attended the visitation yesterday for a sweet gentleman who passed away this week. I remember his smile at the support group meetings when he and his wife, his adoring and devoted caregiver, attended. When the caregivers got together separately, she'd describe the growing challenges, though never complained. Earlier in March, she grabbed our hearts as she wept and described how she had to place him in a care facility because she couldn't give him all the care he required as his disease progressed. Her children saw the toll it was taking on her and reassured her to not feel guilty.
"It was the hardest thing I've ever done," she confessed amid the tears. We listened and hugged her in hopes of giving her the strength to face the greatest challenge of not having him at home with her everyday, the man she had pledged to love, honor and cherish five decades ago.
She had not stepped away from nor forgotten that vow. She had embraced it with greater love and commitment to cherish both of their lives, to give him the 24-7 care he now needed against that relentless, brutal disease, and maintain her own health in the process. And there's not a selfish thing about that when it comes to Alzheimer's. I've watched first-hand it claim the life of one caregiver, and I never want to see that again. No family should have to experience that.
At the visitation, I arrived early and walked into the spacious sanctuary where the family organized itself into an official line, three generations alongside the open casket. When the wife saw me, she smiled and opened her arms to hug me so tight as I expressed my sympathy.
The three words she said with great love and conviction said it all:
"It's a blessing."
Her children echoed that sentiment, that he didn't have to suffer anymore, that they didn't have to watch him deteriorate further, that the faith he had instilled in them was helping carry them through this loss.
Is it inappropriate to say "It's a blessing" when someone passes away after a long illness or a sudden devastating accident? You never know just how fragile the family's emotions are, and you certainly don't want to cause them more grief when your heart has been breaking for them. As an outsider, it's easy to say, "It's a blessing." It's not your spouse, dad or grandpa. Life's experiences have taught me that you probably should keep that thought to yourself. It's best for the family to say that aloud for themselves on their own terms.
I made no apologies as I nodded when she said, "It's a blessing." They were all at peace, and I believe that makes the grief a little more tolerable, though never easy.
Alzheimer's had ravaged this gentle husband, father, grandfather and friend, and was moving on to another family ...
And tomorrow I have another visitation …
Friday, March 26, 2010
Alzheimer's: Bowling me over with memories
I have a permanent date on my calendar, and it takes a mighty big invitation to make me break it. The gathering at the local Alzheimer's Association office on the fourth Thursday of the month at 4 p.m. is very high on my life's priority list because I spend that 90 minutes with folks I have come to love, those who have Alzheimer's or dementia and their caregivers.
It's informal and fun, this monthly session in which we play games, talk and mostly laugh. Sometimes we go around the circle and answer questions that stir memories and prompt giggles and grins. This week it was indoor bowling, and I helped out as a pin girl, straightening and replacing those big white statues with the big red bow-ties and rolling the ball back to the next bowler.
I definitely exercised my body and mind as I laughed and cheered with everyone else and learned not to groan too loudly when there was a gutter ball. The Alzheimer's staff coordinator said we needed to form a bowling team and get shirts and everything. Now that would be a beautiful sight to see.
As I watched the ball roll over and over, I thought of a couple who would have loved today's activity and probably have laughed the loudest, Molly, my dear friend who recently passed away, and her husband Joe, who has Alzheimer's. I remember the story she told me about their first date. Joe invited her out to a bowling banquet, and it wasn't until Joe kept racking up award after award that Molly realized that he was one of the best bowlers in town, if not the region.
Ah, what a girl does for love! She knew nothing about bowling and immediately enlisted the help of family and friends to teach her the game. And she learned her lessons well, as a teacher often does. Did he ask her to marry him because she acquired this new skill? I think it was probably more than that, but she made this sacrifice to please the man she loved.
And she continued to do that throughout their married life, more than 40 years, to love, honor and cherish the man who loved, honored and cherished her. It was that same devotion that carried her as an Alzheimer's caregiver for several years until her body simply wore out. Talk about sacrifice. There's none greater.
Part of me wants to weep in sadness for missing my friend, but a bigger part of me suddenly laughs as I swear I can hear the big pins crashing in heaven as Molly continues to perfect her technique … as she patiently awaits Joe to join her when Alzheimer's is done with him.
It's informal and fun, this monthly session in which we play games, talk and mostly laugh. Sometimes we go around the circle and answer questions that stir memories and prompt giggles and grins. This week it was indoor bowling, and I helped out as a pin girl, straightening and replacing those big white statues with the big red bow-ties and rolling the ball back to the next bowler.
I definitely exercised my body and mind as I laughed and cheered with everyone else and learned not to groan too loudly when there was a gutter ball. The Alzheimer's staff coordinator said we needed to form a bowling team and get shirts and everything. Now that would be a beautiful sight to see.
As I watched the ball roll over and over, I thought of a couple who would have loved today's activity and probably have laughed the loudest, Molly, my dear friend who recently passed away, and her husband Joe, who has Alzheimer's. I remember the story she told me about their first date. Joe invited her out to a bowling banquet, and it wasn't until Joe kept racking up award after award that Molly realized that he was one of the best bowlers in town, if not the region.
Ah, what a girl does for love! She knew nothing about bowling and immediately enlisted the help of family and friends to teach her the game. And she learned her lessons well, as a teacher often does. Did he ask her to marry him because she acquired this new skill? I think it was probably more than that, but she made this sacrifice to please the man she loved.
And she continued to do that throughout their married life, more than 40 years, to love, honor and cherish the man who loved, honored and cherished her. It was that same devotion that carried her as an Alzheimer's caregiver for several years until her body simply wore out. Talk about sacrifice. There's none greater.
Part of me wants to weep in sadness for missing my friend, but a bigger part of me suddenly laughs as I swear I can hear the big pins crashing in heaven as Molly continues to perfect her technique … as she patiently awaits Joe to join her when Alzheimer's is done with him.
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