As I was eating dinner with Dad last week in the Memory Care dining room, I observed his fellow residents, all of whom manifest various levels of cognitive dysfunction. But despite their disabilities, most of them retain remnants of their former personalities and habits.
For example, there's the affable doctor who can still carry on a good conversation - with himself or others. Then there's the busy little woman who can't seem to sit still for very long; she seems driven to serve, moving from table to table as though to offer assistance but never quite articulating the offer or interacting in a meaningful way. And then there's my father who cannot leave the table without first pushing in his chair, even though he nearly loses his balance in doing so.
I've also observed residents in the skilled nursing wing whose Alzheimers or Parkinsons disease has progressed to the point that they are nearly comatose. This makes me thankful for every small way Dad is able to function in the activities of daily living for it may not last much longer.
Sue
Showing posts with label Parkinsons. Show all posts
Showing posts with label Parkinsons. Show all posts
Saturday, August 11, 2007
Monday, July 23, 2007
Compassion capacity
It has seemed throughout this long, five-month ordeal of my mother’s illness and caring for my father that my physical limits (just plain tiredness) limited my capacity for compassion as well. I’d find myself getting impatient, even angry, with Dad when his slowness, due to the Parkinsons, kept us from spending time with Mom. My daily prayer was for an extra dose of patience and compassion.
Now that Mom has passed, my patience and compassion for Dad are back to adequate levels. I can give him extra time for naps, bathing, eating, and other activities without feeling torn apart by the need to spend time with Mom. Dad is so vulnerable right now, having lost his wife of 61 years, his caregiver, the one he trusted to take care of his banking and bill paying (though Mom was barely capable of doing that before her illness). His dementia may protect him, in a sense, from the devastation of the loss, but I can already see physical signs of stress.
As we gathered around Mom’s bed on Friday evening, just after we watched her last breath, Dad turned to me and asked, “What’s my first name?”
Sue
Now that Mom has passed, my patience and compassion for Dad are back to adequate levels. I can give him extra time for naps, bathing, eating, and other activities without feeling torn apart by the need to spend time with Mom. Dad is so vulnerable right now, having lost his wife of 61 years, his caregiver, the one he trusted to take care of his banking and bill paying (though Mom was barely capable of doing that before her illness). His dementia may protect him, in a sense, from the devastation of the loss, but I can already see physical signs of stress.
As we gathered around Mom’s bed on Friday evening, just after we watched her last breath, Dad turned to me and asked, “What’s my first name?”
Sue
Wednesday, July 18, 2007
"I'm pulling for her"
People ask me every day, “How much does your father understand about your mother’s condition?” Then, they’ll say something like, “He’s going to be lost without her.”
Truth is, it’s hard to know how much he understands. He sees what we see. He hears most of what we hear, including the very open discussion with the palliative care team, in which we were told, “three to eight weeks.” That was three weeks ago.”
Last night as we stopped by Mom’s room after dinner to say goodnight, she was sleeping peacefully. Dad asked quietly, “Is she deceased yet?” I said, “No, Dad, can’t you see her breathing?”
“Well, I’m pulling for her,” he said firmly.
He’s pulling for her to get well and the rest of us are praying that she’ll pass quickly and without pain. We’re pulling for her, too, but I don’t think Dad would agree that we’re pulling in the same direction.
After Mom dies, Dad’s life will be very different and I have no idea how to prepare him for that. We just have to take one day at a time and treat him gently.
Sue
Truth is, it’s hard to know how much he understands. He sees what we see. He hears most of what we hear, including the very open discussion with the palliative care team, in which we were told, “three to eight weeks.” That was three weeks ago.”
Last night as we stopped by Mom’s room after dinner to say goodnight, she was sleeping peacefully. Dad asked quietly, “Is she deceased yet?” I said, “No, Dad, can’t you see her breathing?”
“Well, I’m pulling for her,” he said firmly.
He’s pulling for her to get well and the rest of us are praying that she’ll pass quickly and without pain. We’re pulling for her, too, but I don’t think Dad would agree that we’re pulling in the same direction.
After Mom dies, Dad’s life will be very different and I have no idea how to prepare him for that. We just have to take one day at a time and treat him gently.
Sue
Sunday, May 20, 2007
No Fireworks
This morning after breakfast I finally found the courage and the words to talk to Dad about plans for my respite trip, which starts next Friday. I had run through all the worst-case scenarios in my mind – Dad curses at me; Dad becomes silent, hostile, and depressed; Dad flat out refuses to budge from his apartment. As usual, my fears were unfounded and a total waste of emotional energy.
Well, maybe not a total waste. It’s always useful to prepare for the worst and hope for the best. Though I had even considered waiting until the very last minute to reveal the plans, I just couldn’t treat him the way I know I would not want to be treated myself. Give him some time to get used to the idea; give him time to ask questions and feel secure that he will have all the support he needs, my conscience told me.
With a Parkinsons patient suffering from dementia, you don’t know what to expect, and you can’t necessarily expect them to think or act logically. This is something I rediscover almost every day. Though I had talked about my trip many times, I was surprised that Dad had completely forgotten about it. But I did anticipate that he would respond better to a visual plan. So I got out a month-at-a-glance calendar and made notes on the days I would be gone, the days he would spend at the nursing facility with Mom, the days he would have assistance from the home health aid, the day Sis will pick him up to spend time at her place, and the day I will return. He stared at the calendar for about 45 minutes, sometimes dozing off. Each time I asked if he had any questions, he would return to the first marked day and read the notes aloud, then he’d stare and doze some more.
Now, my challenge is to tell Mom about my trip. I worry that when she learns Dad will be staying “with” her (down the hall), she’ll think she’ll have to take care of him and will worry that she can’t. I worry that she will become further depressed and will fear I’m abandoning her. I’ll wait to tell her when Sis is here with me. Her presence will reinforce the fact that Sis will be available to visit and to help as needed.
I hope that I can keep Mom’s and Dad’s concerns, if they have any, on a higher level rather than in the nitty-gritty details. My job is to make sure the nursing facility has Dad’s medications, knows his daily habits and needs, and is prepared to make his stay a positive experience. He may end up there long-term eventually. I pray he may even look forward to it.
Sue
Well, maybe not a total waste. It’s always useful to prepare for the worst and hope for the best. Though I had even considered waiting until the very last minute to reveal the plans, I just couldn’t treat him the way I know I would not want to be treated myself. Give him some time to get used to the idea; give him time to ask questions and feel secure that he will have all the support he needs, my conscience told me.
With a Parkinsons patient suffering from dementia, you don’t know what to expect, and you can’t necessarily expect them to think or act logically. This is something I rediscover almost every day. Though I had talked about my trip many times, I was surprised that Dad had completely forgotten about it. But I did anticipate that he would respond better to a visual plan. So I got out a month-at-a-glance calendar and made notes on the days I would be gone, the days he would spend at the nursing facility with Mom, the days he would have assistance from the home health aid, the day Sis will pick him up to spend time at her place, and the day I will return. He stared at the calendar for about 45 minutes, sometimes dozing off. Each time I asked if he had any questions, he would return to the first marked day and read the notes aloud, then he’d stare and doze some more.
Now, my challenge is to tell Mom about my trip. I worry that when she learns Dad will be staying “with” her (down the hall), she’ll think she’ll have to take care of him and will worry that she can’t. I worry that she will become further depressed and will fear I’m abandoning her. I’ll wait to tell her when Sis is here with me. Her presence will reinforce the fact that Sis will be available to visit and to help as needed.
I hope that I can keep Mom’s and Dad’s concerns, if they have any, on a higher level rather than in the nitty-gritty details. My job is to make sure the nursing facility has Dad’s medications, knows his daily habits and needs, and is prepared to make his stay a positive experience. He may end up there long-term eventually. I pray he may even look forward to it.
Sue
Monday, May 14, 2007
Why this, Lord?
Imagine for a moment that all the skills for which you have been most respected throughout all of your career are suddenly gone. Imagine that you were an effective and persuasive speaker and you can no longer put a coherent sentence together. Imagine that you had a commanding voice, and you can no longer speak above a whisper. Imagine that you were blessed with logical thinking and analytical ability, but you now struggle to understand the sentiment behind a Mother’s Day card.
Why would God let this happen to someone? Why, of all things, would it afflict my father, who had a successful and respected career as a labor relations executive? He survived lung cancer for this? He drove a car until he was 82 and never had an accident – for this?
I used to have a recurring nightmare with only minor variations. The bad guys were after me; they almost had me in their clutches; and no sound would come out of my mouth. I wanted to scream, or, in some variations, I wanted to try to reason with them, but fear had stolen my voice. A “high intuitive” person once told me that this dream was about losing a most highly developed and valued ability.
I wonder if my father ever had dreams like that. I wonder if I, too, will be stripped of my ability to think creatively, to reason, to speak. I know my body will deteriorate, but please, God, let my mind and my voice be the last things to go.
Sue
PS - I won't keep you in suspense...yes, Dad signed the Mother's Day card...after two more hours of study and struggle.
Why would God let this happen to someone? Why, of all things, would it afflict my father, who had a successful and respected career as a labor relations executive? He survived lung cancer for this? He drove a car until he was 82 and never had an accident – for this?
I used to have a recurring nightmare with only minor variations. The bad guys were after me; they almost had me in their clutches; and no sound would come out of my mouth. I wanted to scream, or, in some variations, I wanted to try to reason with them, but fear had stolen my voice. A “high intuitive” person once told me that this dream was about losing a most highly developed and valued ability.
I wonder if my father ever had dreams like that. I wonder if I, too, will be stripped of my ability to think creatively, to reason, to speak. I know my body will deteriorate, but please, God, let my mind and my voice be the last things to go.
Sue
PS - I won't keep you in suspense...yes, Dad signed the Mother's Day card...after two more hours of study and struggle.
Monday, April 30, 2007
That Sneaky Old Reality
It’s so easy to live in your own little world of hopes, dreams, expectations. Then, suddenly, Reality sneaks up behind, puts hands over your eyes, and says, “Guess who,” just like that game we played as kids. When you open your eyes, there’s Reality staring you in the face.
That’s the way I felt yesterday as I left the hospital with Dad and Sis after a visit with Mom. The Reality staring me in the face is that Mom – even if she survives this bout of acute lung problems and the upcoming radiation treatments for cancer – will never be the same.
In some ways it was a fun, uplifting visit. Mom was awake, alert, and funny. It was as though she had spent all day working on her stand-up comedy routine. She had a one-line comeback for everything we said, and even Dad was laughing. It started with her sitting there with the hospital telephone in her lap. When we walked in the door, she said, “Where have you been? I’ve been trying to call you all day!”
“Who were you trying to call, Mom? What number?”
“Well, I don’t have any of your numbers. I could hear someone talking, but they couldn’t hear me!”
We wrote down all our cell phone numbers on a pad of paper, and told her not to call in the middle of the night. We joked that we’d have the nurses remove the speaking valve from her trach tube if she didn’t behave.
Her pent-up conversation took a number of wild curves as she told us about something she’d overheard about hospital paper procurements (new paper not as good as the old paper); her worry about George Bush leading the country (what’s going to happen to us, she wondered); and her determination not to have a new Olin Mills portrait taken for her community directory (apparently confusing something I had said about my new church directory). There was an edge of paranoia and dementia in these ramblings, which may be due to long days with nothing but the TV and an occasional busy nurse for company. But Sis and I later shared our realization that Mom and Dad will have to go to assisted living – not just short term while Mom recovers – but forever. Of course, this was always a possibility that we acknowledged, and we had been researching various facilities. But deep down, I think we both thought/hoped that Mom would be able to live independently again.
Dad and I spent the weekend at Sis’s. After a fabulous dinner, I was in desperate need of a brisk walk to aid digestion and burn at least a few of the calories. Dad stayed with Sis’s partner, and Sis went walking with me. We returned to a paranoid Papa, who couldn’t be persuaded to go to bed until after midnight. He thought I was leaving. He heard noises in the house. He felt the need to hide his wallet. That was all he managed to articulate; only God knows what else was on his mind.
Was it Mom’s confusion that set him off? Was it the change in environment – staying a Sis’s house (even though he’s done that many times before)? Was it anything else we said in his presence (though we try to avoid talking about the future to spare him anxiety)? What kinds of strange imaginings will the two of them cook up when Mom and Dad are back together again?
Sue
That’s the way I felt yesterday as I left the hospital with Dad and Sis after a visit with Mom. The Reality staring me in the face is that Mom – even if she survives this bout of acute lung problems and the upcoming radiation treatments for cancer – will never be the same.
In some ways it was a fun, uplifting visit. Mom was awake, alert, and funny. It was as though she had spent all day working on her stand-up comedy routine. She had a one-line comeback for everything we said, and even Dad was laughing. It started with her sitting there with the hospital telephone in her lap. When we walked in the door, she said, “Where have you been? I’ve been trying to call you all day!”
“Who were you trying to call, Mom? What number?”
“Well, I don’t have any of your numbers. I could hear someone talking, but they couldn’t hear me!”
We wrote down all our cell phone numbers on a pad of paper, and told her not to call in the middle of the night. We joked that we’d have the nurses remove the speaking valve from her trach tube if she didn’t behave.
Her pent-up conversation took a number of wild curves as she told us about something she’d overheard about hospital paper procurements (new paper not as good as the old paper); her worry about George Bush leading the country (what’s going to happen to us, she wondered); and her determination not to have a new Olin Mills portrait taken for her community directory (apparently confusing something I had said about my new church directory). There was an edge of paranoia and dementia in these ramblings, which may be due to long days with nothing but the TV and an occasional busy nurse for company. But Sis and I later shared our realization that Mom and Dad will have to go to assisted living – not just short term while Mom recovers – but forever. Of course, this was always a possibility that we acknowledged, and we had been researching various facilities. But deep down, I think we both thought/hoped that Mom would be able to live independently again.
Dad and I spent the weekend at Sis’s. After a fabulous dinner, I was in desperate need of a brisk walk to aid digestion and burn at least a few of the calories. Dad stayed with Sis’s partner, and Sis went walking with me. We returned to a paranoid Papa, who couldn’t be persuaded to go to bed until after midnight. He thought I was leaving. He heard noises in the house. He felt the need to hide his wallet. That was all he managed to articulate; only God knows what else was on his mind.
Was it Mom’s confusion that set him off? Was it the change in environment – staying a Sis’s house (even though he’s done that many times before)? Was it anything else we said in his presence (though we try to avoid talking about the future to spare him anxiety)? What kinds of strange imaginings will the two of them cook up when Mom and Dad are back together again?
Sue
Saturday, April 28, 2007
Creative Solutions
When you wake up to the realization that your old patterns are no longer serving you well, it’s time to change. Take this morning, for instance, as I tried to decide what to have for breakfast. I needed fruit, fiber, and protein without a ton of calories. None of my usual breakfast menus seemed to fit the requirements. So I made a salad of leafy greens, leftover chicken, and strawberries. It was a perfect solution.
This was not rocket science. And salad for breakfast is not original with me. In fact, Sis’s partner introduced me to the idea long ago. But now that I’ve broken my old pattern of thinking (salad isn’t for breakfast), I’m empowered to experiment with all sorts of novel choices.
The bigger problem that has plagued me ever since I began caring for Dad is how to get him into bed at night with minimal physical effort on my part. It’s not that I couldn’t lift him and place him on the bed, on top of the protective, water-poof pads. But I don’t want to get him into a dependent routine that Mom will be unable to do herself when she gets home from the hospital and is fully recovered from her surgery.
Dad has developed his own get-into-bed-routine that requires just a little help from me. However, due to his Parkinsons, he doesn’t remember it easily from night to night. It’s almost like being caught in a Groundhog Day time warp in which you must start all over again each night. And it can take him 20-30 minutes just to remember and then persuade his muscles to cooperate. It’s exhausting to watch him.
So, a couple of nights ago, as Dad struggled to remember what he has done each night for months, I sat on the side of the other twin bed and pretended I was Dad. I tried to imagine myself with very little flexibility in my back and little muscular coordination in my legs. Then I practiced over and over until I found a movement that I thought might work. Then, I had Dad try it.
Last night was our second try. It seems to be a much more natural and comfortable series of moves for him than the old way. Though I am giving a bit of lifting assistance to his legs, I am hopeful, with time, that he will be able to do more of it himself so that I (and later Mom) will do less.
Sue
This was not rocket science. And salad for breakfast is not original with me. In fact, Sis’s partner introduced me to the idea long ago. But now that I’ve broken my old pattern of thinking (salad isn’t for breakfast), I’m empowered to experiment with all sorts of novel choices.
The bigger problem that has plagued me ever since I began caring for Dad is how to get him into bed at night with minimal physical effort on my part. It’s not that I couldn’t lift him and place him on the bed, on top of the protective, water-poof pads. But I don’t want to get him into a dependent routine that Mom will be unable to do herself when she gets home from the hospital and is fully recovered from her surgery.
Dad has developed his own get-into-bed-routine that requires just a little help from me. However, due to his Parkinsons, he doesn’t remember it easily from night to night. It’s almost like being caught in a Groundhog Day time warp in which you must start all over again each night. And it can take him 20-30 minutes just to remember and then persuade his muscles to cooperate. It’s exhausting to watch him.
So, a couple of nights ago, as Dad struggled to remember what he has done each night for months, I sat on the side of the other twin bed and pretended I was Dad. I tried to imagine myself with very little flexibility in my back and little muscular coordination in my legs. Then I practiced over and over until I found a movement that I thought might work. Then, I had Dad try it.
Last night was our second try. It seems to be a much more natural and comfortable series of moves for him than the old way. Though I am giving a bit of lifting assistance to his legs, I am hopeful, with time, that he will be able to do more of it himself so that I (and later Mom) will do less.
Sue
Tuesday, April 17, 2007
Lowered defenses
I think I'm getting a cold. What timing! Today Mom may be moved to her new long-term respiratory care center, and I want to be there with bells on to help her adjust. But I don't want to take a chance on spreading germs. I suppose I can don gloves, mask, gown, and lather myself with that anti-bacterial slime.
I hate to cast blame, but I'm feeling sleep-deprived and you-know-who has been keeping me up past my bedtime. Last night Dad deliberated for two hours about whether to renew his AAA membership. I tried to explain that he no longer needs trip planning or roadside assistance since he sold his car two years ago and can't drive. But in his 84-year-old head, this membership is related to insurance. Insurance is like a patriotic or civic duty; the more people in the pool, the better for everyone. Finally, he put the AAA letter away in his stash of other "personal" mail.
If I sound cranky and unsympathetic, I am...this morning. But I weep over this gentle man, with great integrety and propriety losing all personal control of his life and affairs.
Sue
I hate to cast blame, but I'm feeling sleep-deprived and you-know-who has been keeping me up past my bedtime. Last night Dad deliberated for two hours about whether to renew his AAA membership. I tried to explain that he no longer needs trip planning or roadside assistance since he sold his car two years ago and can't drive. But in his 84-year-old head, this membership is related to insurance. Insurance is like a patriotic or civic duty; the more people in the pool, the better for everyone. Finally, he put the AAA letter away in his stash of other "personal" mail.
If I sound cranky and unsympathetic, I am...this morning. But I weep over this gentle man, with great integrety and propriety losing all personal control of his life and affairs.
Sue
Wednesday, April 11, 2007
I am not alone
Sometimes I feel alone and sad. Like last night at dinner with Dad. After a long day at the hospital, during which Mom had to be put back on the ventilator and sedatives, I was feeling discouraged. Instead of envisioning Mom's eventual release from the hospital and full recovery, I was starting to think about the possibility of her never coming home. This was not something that I felt I could articulate to Dad. With his Parkinsons, mixed with some dementia, I don't know who much he understands, remembers, or worries, but I feel I need to protect him and help him feel secure. So I remained stoic (if not cheerful) on the outside as I sobbed on the inside.
Emails, phone calls, and blog responses from friends and family have helped me feel not so alone. Some have shared their own experiences with aging parents and with dementia. Some have just let me tell my story. Even my dear husband, who hates too much information about illness, bodily functions, and emotions, let me ramble on. For all this I am grateful.
This morning, on the way to the hospital, I prayed that I would feel God's presence and sense Him somehow working through me to help Mom heal (as opposed to yesterday, when my arrival at the hospital coincided with Mom needing more sedation!). I believe my prayers were answered. I've stood by Mom's bed calming her after a coughing spasm, reassuring her that her blood pressure is doing great, cheering her on when she was finally placed in a chair to sit up for a few hours.
I'm not taking the credit, but I thank God that I can feel somewhat useful and see promising results.
Sue
Emails, phone calls, and blog responses from friends and family have helped me feel not so alone. Some have shared their own experiences with aging parents and with dementia. Some have just let me tell my story. Even my dear husband, who hates too much information about illness, bodily functions, and emotions, let me ramble on. For all this I am grateful.
This morning, on the way to the hospital, I prayed that I would feel God's presence and sense Him somehow working through me to help Mom heal (as opposed to yesterday, when my arrival at the hospital coincided with Mom needing more sedation!). I believe my prayers were answered. I've stood by Mom's bed calming her after a coughing spasm, reassuring her that her blood pressure is doing great, cheering her on when she was finally placed in a chair to sit up for a few hours.
I'm not taking the credit, but I thank God that I can feel somewhat useful and see promising results.
Sue
Monday, April 9, 2007
Hurry Up!
Taking care of my father reminds me of taking care of my sons when they were little. As a working mom, I was always on a tight schedule. There was seldom any padding in the schedule to allow for completion of games or projects, or whatever the boys were in the middle of when it was time to go somewhere. And, when Mom's in a hurry, it's so much easier to make the decisions rather than letting the little ones have choices. I now know that this is not the best way to raise creative, responsible, self-reliant kids (though mine have done well in spite of me).
So it is with a father with Parkinsons. It would be so much easier not to give him choices; to fix breakfast and set it before him, to put his keys and money in his pockets in the morning and empty them at night (tasks that take him about 10-15 minutes). However, I know it's really important for him to do for himself everything that he can possibly do. It's good for his mind-nerve-muscle coordination. It's good for his sense of independence.
I am learning to accommodate his time consuming efforts at self-reliance. For example, the 30 minutes he spends washing his face and cleaning his dentures has become my reading time. I'm whipping through magazines and good junk novels as I keep one eye on Dad, ready to rush to his aid if he loses his balance or falls.
Then, there's the 15 minutes it take him to get into bed. I could probably lift him and place him into position (with waterproof pads neatly under him in case of accidents). But it's better for him to exercise the neurological connections and his memory to figure out how to do it. Besides, when Mom gets back home to care for him, I don't want him to be dependent on something she's not able to do. Instead, I play the cheerleader..."that's it...swing those feet around...ok, now walk the feet over, lift the hips...hooray, that's the best you've done yet!"
Sue
So it is with a father with Parkinsons. It would be so much easier not to give him choices; to fix breakfast and set it before him, to put his keys and money in his pockets in the morning and empty them at night (tasks that take him about 10-15 minutes). However, I know it's really important for him to do for himself everything that he can possibly do. It's good for his mind-nerve-muscle coordination. It's good for his sense of independence.
I am learning to accommodate his time consuming efforts at self-reliance. For example, the 30 minutes he spends washing his face and cleaning his dentures has become my reading time. I'm whipping through magazines and good junk novels as I keep one eye on Dad, ready to rush to his aid if he loses his balance or falls.
Then, there's the 15 minutes it take him to get into bed. I could probably lift him and place him into position (with waterproof pads neatly under him in case of accidents). But it's better for him to exercise the neurological connections and his memory to figure out how to do it. Besides, when Mom gets back home to care for him, I don't want him to be dependent on something she's not able to do. Instead, I play the cheerleader..."that's it...swing those feet around...ok, now walk the feet over, lift the hips...hooray, that's the best you've done yet!"
Sue
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