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."
Sunday, July 11, 2010
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.
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