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.
Saturday, July 24, 2010
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.
Subscribe to:
Posts (Atom)