An eyesore, that’s what it is – the screen door flapping in the breeze is a real eyesore. To Grandpa, that is. This morning, I got a call from my brother (aka Uncle Jay) about that door, and sure enough, the squeaky Grandpa gets the door fixed.
Jay asked if all the parts were there. I thought they were, but I really wasn’t sure. I’ve been too preoccupied with other aspects of Grandpa’s care to even remember that the front door is broken until I slam it shut into place when I leave for the night.
That door has been broken since the springtime when the wind caught it and nearly pulled it off the frame. It’s still hanging on, but only by the outside hinges. I think it might have busted when Eric was heaving Grandpa up or down the front stairs or when we were carrying groceries in from the van.
You see, we don’t have a handicap ramp, but we do have Eric who is strong enough to lift Grandpa up and down the stairs in his wheelchair. However, he would have only been able to hold onto one thing at a time – either the screen door or Grandpa’s wheelchair. Can you imagine? There goes Grandpa. Wheeeeee! Bye, bye Grandpa. Don’t let the screen door hit you – or your wheelchair – in the rear!
Well, last night Grandpa called Uncle Jay to complain about the broken screen door. Claire was Grandpa-sitting, and I can just see the scene unfolding. They were probably watching some deep sea diving program on the Discovery channel, when suddenly, out of nowhere, Grandpa became disgruntled again about the broken door.
He has a phobia about that door. He’s worried that mosquitoes or flies will get in. He’s more worried about neighborhood gangs noticing a property “in disrepair.” He has told me on no uncertain terms that the broken door is an open invitation for gang activity – that we are just asking for trouble. He’s convinced that the neighborhood hoodlums will see it hanging askew and plot to break into the house in the middle of the night.
Yep, that unsightly door will encourage them to walk right in the house and take all his valuables. Next thing you know, we’ll see black-hooded thugs running around the block with a walker or drag racing up and down the street in a hospital bed.
I wouldn’t have let Grandpa talk to Uncle Jay about it, but poor Claire fell for the bait. Grandpa figured he’d complain again because it has done no good to complain to me. It’s true. He knows I’ll say what I’ve been saying for months, “Jay’s in charge of the door, dad. He knows all about it.”
So this morning Uncle Jay and I had a lively discussion over the whereabouts of screen door parts, broken dishwashers, and furnace filters that need changing every month. Things I’m sure I would have eventually thought about if I wasn’t so busy thinking about medicine, meals, and monthly budgets.
Screen doors, ha! The least of my concerns – but definitely first on Grandpa’s “most urgent” list.
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.