Thursday, December 30, 2010

Pepaw's Christmas wish - part 4 - conclusion

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!

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

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.


“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."


The clock ticked …

"Shouldn't that doctor be here by now?"

"The nurse said it should only be a few more minutes."


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.