Many of the health issues we have battled against when we first started taking care of Grandpa have fallen by the wayside. It’s been almost a year and we (including Grandpa) have forgotten at times just how much progress he’s made. I want to write about each of these medical problems at a different time, but for now, his morning dementia issues have cleared up since he was taken off Benzatrophine* which the doctor said he should have only been on for six months (he was on it for seven years). He doesn’t choke anymore when he takes a sip of water (dysphagia), his voice has pretty much returned to normal (Parkinson’s affects the vocal chords), and he doesn’t needs a bib anymore. A “bib” you say? Yes, a bib.
When Grandpa first came home, he had a hard time sitting up in his wheelchair and eating without getting a good portion of his food in his lap. Well, that’s all over now. He is in much better control of his hand-to-mouth coordination. The other night when we were watching TV, I served him his dinner in the living room and handed him a napkin. It was then that I realized we hadn’t used a bib for a long time. In fact, the last time I saw it, the over-sized terrycloth towel had been used to wipe some green paint off of a paint stick.
It doesn’t take long to forget just how far he/we have come. Yep, bibs, I hope, are a thing of the past. To quote an old ad campaign from the 1980’s, “You’ve come a long way baby!”
*Benzatrophine Cogentin® Neurology An anticholinergic used to manage parkinsonism Adverse effects Usually dose related–nervousness, impaired memory, numbness, listlessness, depression, confusion, excitement, hallucinations with high doses; GI–dry mouth, constipation, N&V, blurred vision, mydriasis, hyperthermia, anidrosis, urinary retention, dysuria, weakness, rash, tachycardia.
Spinning off the famous ideology of a former first lady, “It takes a village to raise a child,” in my opinion, “It takes a family to raise a Grandpa!”
Yes, taking care of Grandpa hasn’t been easy, but with God’s help, and in the context of family, we’re making it. Grandpa’s level of care is way beyond assisted living, more at the high end of skilled nursing. That’s why between all of us, we’re able to take care of him without totally burning out or paying for 24/7 caregivers, he can’t afford. We are the caregivers, specifically my son, 19(the first two years-now married and 22, living in Seattle), and my three daughters, 24 (now 28), 15 (now 18) and 11 (now 15), my husband and myself.
When my brother first decided to bring our father home, I knew we would need help, so I put the word out right away to friends. Dad was pretty weak and we were busy with our home business that gets very busy around Christmastime. It was October and we were already preparing for the rush, so I wasn’t able to devote all my time to Grandpa. At the time, I didn’t realize what these new circumstances would require of me, which was probably just as well. I wouldn’t have had the strength or fortitude to go the distance (insert picture here of deer in headlights).
I could only handle one day at a time, and each time I was with Dad, he made it very clear that no one could take care of him quite like we could. I tried not to let him play on my emotions, but I knew in my heart it was true. Hadn’t he been in the nursing home for four years? Finally, after all had been through, he grew to appreciate and trust his family. We can unequivocally thank the nursing home for that.
We only had a certain amount of money to work with, so we figured for the hours we were offering, we could pay a decent hourly rate, including room and board. I put the word out among friends and was given the name of a young man who felt he had a call on his life to take care of the elderly. He sent a glowing email about himself (I think he should have been a marketing director), his many accomplishments, his passion for the elderly, and how he was comfortable grooming and bathing Grandpa, and doing light housework and laundry.
He had worked a year for an agency taking care of an elderly woman and he came with great references. I soon realized, however, that he hadn’t actually worked for most of the people who were on his list. They obviously wanted him to get a job because he had been unemployed for over a year.
In the long run, caregiver one was more trouble than Grandpa was. From week to week, I felt like I was training someone else’s kid. Even though he was 26, he often had the reasoning of a 12-year-old. He made some very poor judgment calls, but the worst was when the furnace went out on New Year’s Eve. It was a really frigid night, one of the coldest of the year, and caregiver one elected not tell us there was no heat in the house. He had had a couple of beers and wasn’t feeling the cold himself, but in the next room, Grandpa was lying there feeling the chill right down to his bones. He certainly complained the next day, and rightly so. I guess it’s not bad enough that Parkinson’s patients feel stiff as a board, let’s just freeze them to death, too. After three months of needless pain and mental anguish, we let caregiver one go. Everyone in the household breathed a collective sigh of relief.
Next we tried the lady next door (caregiver two) who had sort of been spying on caregiver one and reporting his indiscretions to my brother. We were told that he daily sat on the stoop, smoking cigarettes and talking to his girlfriend on his cell phone. We knew he spent a lot of time – killing time, and we expected some down time. Grandpa doesn’t need help every minute of the day, he just needs someone to be available all the time. The problem is, we couldn’t get caregiver one to do the work he was responsible for like throwing Grandpa’s diaper in the outside garbage instead of leaving it laying around his bedroom.
After working for just a week-and-a-half, caregiver two became ill and wouldn’t report for work or return our phone calls. My brother asked her to come over and clean the house, but she never showed up. She was angry we hadn’t given her all the hours we gave to caregiver one, but over the months, Grandpa made it clear he preferred our family over strangers, so in January, we took the plunge and became his full-time caregivers. At least we knew we could rely on ourselves.
Yes, it will take the help of your whole family if you want to take care of an elderly parent who needs a high level of care. As the saying goes, “many hands make light the work, ” but experience has taught us, the only hands you can really rely on are your family’s. Hindsight is always 20/20, isn’t it?
Today, I walked Grandpa wherever he needed to go. When he was ready to eat lunch, he walked to the kitchen, when he needed to get changed, he walked to the bathroom. From there, he walked to his bedroom where he is working on his book.
The idea is to get him out of his wheelchair as much as possible. He seemed to lose some mobility over the last week, so we’re stepping up the exercise routine. He said he can already feel the difference.
But Grandpa is moving real slow, his legs just don’t want to go. Yet, he remains amazingly determined. I really don’t think I would have such a great outlook on life if I were in his shoes.
“I think it’s worse for you, than it is for me.” he said, as I waited for him to walk forward a few steps.
I don’t think so, Dad,” I replied. How could he ever think that, I wondered?
Honestly, he could barely get his motor apparatus in gear, and he was thinking of me.
By his own admission, the four years he spent in the nursing home has given him an empathy for others he never had before. It’s the only way we have been able to care for him. Grandpa is a changed man.
It doesn’t matter how long it takes him to get where he’s going – from here to eternity – just as long as Grandpa keeps trying. That’s all that counts.
“You know, I’m a perfectionist,” Grandpa commented.
“I know,” I replied.
“You know, you’re one too.” he added.
“I know,” I agreed, laughing at his insight.
But truthfully, as I pondered his comment, the thought bothered me. I’m sure his observation stems from the fact that I expect the kids to do housework a certain way when we’re at Grandpa’s, and I have to correct them when they don’t do it right. After all, order in the midst of chaos is comforting. Not that it’s chaotic here like when we first brought Grandpa home (we were navigating through uncharted territory and we often didn’t have a clue what we were doing), but depending on what Grandpa is going through – attitude or health-wise, and the rest of us for that matter – a clean house can bring a semblance of normalcy to overstressed lives. But perfectionist standards can also cause hard feelings.
I remember the year my mother died. Grandpa took care of her ’round the clock in this very house. Our first child, Claire, was 9-months-old and we would come over to visit mom as she lie sick in bed. One day, I fed Claire a cracker in the kitchen and dad got really mad when she dropped crumbs on his clean floor. That’s how stressed out he was from caring for mom for months-on-end. He hurt my feelings, excruciatingly.
I had my moment in this very same kitchen the other day. I had asked the girls to set the table and when we gathered for dinner, the water glasses were not filled with ice or water, and they were severely mismatched. It was a half-hearted job by a child who was surely thinking of other things. I wasn’t happy. I venture to say my attitude was just as upsetting to my children as my father’s had been with me. How ironic that I would have the opportunity 24 years later to be reminded of what it is like to make perfection the object of my affection, instead of the people I love.
I don’t think being a perfectionist is something to be proud of. I had thought the days of needing to appear as if we have “everything together” were long gone. Or maybe it’s because, I’m visual, but I just want things to be orderly at Grandpa’s.
I’m sure that those who really know me, know I am far from perfect. Thank God, He has knocked me down a few perfectionist notches over the years and even changed my understanding of the word. The Greek meaning for the word perfect is: complete, grown-up, a mature man. That brings a godly perspective to the word, doesn’t it?
James 1 says, “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”
I can’t help but think that God is using this situation with Grandpa to perfect Himself in me. Ha! That’s going to take a while.
We had a couple of wonderful weeks with Grandpa. He seemed as content as he could be. But yesterday, due to his lack of mobility, I saw a bit of impatience creep back into his spirit. He has a dream that he’s going to walk around the house all by himself.
I love him for wanting to, but it’s not going to happen. We have to be in the same room with him when he is at his walker with our hands on his safety belt. Rarely do we take our hands off of that belt. That may seem a little extreme, but there is a reason we are so vigilant.
Three years ago, my landlady fell and broke her hip. One Sunday morning, she was coming out of her bathroom with her walker when she tripped and fell in the hallway and broke her hip. She was never able to come back to the farm after that. I share this story with my dad every time he begins to try to to walk around the house by himself. He usually doesn’t get very far, and just a friendly reminder of our landlady’s woes and it is enough to bring him back to reality.
My dad has a fighting spirit and and at the age of 89 (almost 90), he’s one of the most self-motivated people I know, which is why he got a little “snippy” with me, yesterday when I tried to help him re-position himself in his wheelchair for the third time that day. If he doesn’t sit down just right, he leans way over to the side because of the curve of his spine.
We walked from his bedroom to the kitchen, my left hand holding his safety belt and my right hand pulling the wheelchair behind me, a safety measure he wanted in place, because somehow he lost confidence in me. I’m strong enough to catch him from going down, but he doesn’t want me to strain myself if he does. The problem is, he gets shaky just thinking about it and starts to wobble. Then, I have to tell him everything is okay, just keep coming forward or we’re going to have to start all over again.
When we got to the kitchen, I pushed the wheelchair behind him and he sat down to eat lunch, only he didn’t get positioned correctly. When I tried to help pull him up so we could scoot him over, he protested. “Now, let me do it! I don’t want you to hurt yourself!”
“I already have,” I murmured to myself as I popped his lunch into the microwave. I’ve had to take care of Grandpa all week long because Eric has been working over at the farm, bringing in the hay and helping Robert paint the house. I’ve felt a few more aches and pains helping him up and down this week and I was grumbling to myself about it.
“I’m sorry, I yelled.” he said. I think his so-called yell was pretty low on the decibel scale, a four maybe. It didn’t bother me.
“That’s okay dad.” I said.
Doesn’t it figure, that the one area I struggle with the most is the one that Grandpa is most anxious about? Becoming ambulatory is suddenly at the forefront of his thinking, but he picked the wrong day to try to achieve new goals. I was taking care of him all by myself and my limitations for lifting him only seemed to make him want to walk by himself all the more. Like it or not, when Eric isn’t here, Grandpa is stuck depending on his 53-year-old daughter who can’t lift his 160 pounds – comfortably, but does the best she can.
Ah, the vicissitudes of life for Grandpa and me.
The day Grandpa stops trying to meet his goals, he’ll either be bed-ridden or dead, and if I keep trying to meet them in my own strength, I will be too. I pray that I learn to depend more on God, daily, and look to Him for the strength I need to physically care of Grandpa.
“But they that wait on the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Isaiah 40:31
Today, my family is getting a break at Great America Amusement Park. Great America is practically in our own back yard and once a year, my husband and children spend the day there, riding death-defying roller coasters and yelling at the top of their lungs. Robert and the kids really look forward to making memories, but not with me. I have neurological issues that prevent me from joining them (thank God), so every year I am spared the self-inflicted punishment of having my body thrown about as if it were a sack of potatoes.
All this to say, since I wasn’t going with them, I became the designated Grandpa sitter. We had be at his house around 7:00, and Grandpa doesn’t usually get up until 8:00, so Eric had to wake him up early. By the time we arrived, Eric had changed and dressed him, and when I walked in his bedroom, Grandpa was already going back to bed. He had woke up around 6:00 and was still sleepy. Grandpa usually takes a power nap after breakfast, but being an hour off, he was not ready to eat breakfast yet.
Months ago, our neurologist said that if we needed to, we could give Grandpa some Carbidopa before he gets out of bed in the morning to give him a little jump start and warm up his muscles. We usually don’t have to do that, however. Eric is strong enough to lift Grandpa around and help get him going if he’s not moving well. But today I thought it might be best to give him one tablet to help him want to wake up and not sleep the morning away since he was already a little off schedule.
Obviously, I’m not as strong as a 19-year-old and my spinal cord issues make lifting and pulling an issue. I have to help my dad past the one spot where gravity is pulling him backwards, and I need him to move forwards. It’s not fun, but I have no alternative when I am here by myself other than to try and pull his 160 pounds up to a standing position. Along with his pill, I gave Grandpa a piece of cheese and bread so his stomach wouldn’t be upset, and he slept until 9:00 a.m.. If he misses any of his medications, he gets exhausted and way off schedule for his next meal, so we try to keep everything running smoothly and not forget to give him his pills on time.
So far today, I have cooked Grandpa breakfast and lunch (and will cook dinner,too), changed his diaper, walked him to the kitchen (pulling his wheel chair behind me for his comfort – he’s been worried today about not having his chair nearby for some reason), sat with him through his nurse’s visit, and worked on getting some of his old credit debt straightened out with a credit counselor. As well as writing this blog, I managed to get a nap in on the couch. One thing I learned from being a mommy, when the baby sleeps, you sleep. That’s true when I’m taking care of Grandpa, too.
Grandpa quote of the day:
“I have to get back to work. Enough playing around.” Grandpa on practicing Chopin at the piano and needing to go back to his bedroom to write on his book about the nursing home.
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