“The only upside of Alzheimer’s I’ve found so far: introducing my dad to “new” things. This evening I took him to Starbucks, and he was like a kid on Christmas. It was endearing and heartbreaking at the same time.” Elizabeth, Chuck’s middle daughter, November, 2015.
If you haven’t read Part One of this story, please do so before reading this one, so you will better understand the struggles our friend and his family are going through.
Far too often, people have a tendency to think of Alzheimer’s victims as only the elderly, who are expected to go through changes such as this toward the end of their lives. This is simply not true. One of our friend’s fathers is ninety-four, and his memory is as clear as it was fifty years ago. Chuck’s memory issues began most likely in his mid-fifties.
After we started catching up with Chuck and his ex-wife and daughters, it became very clear Chuck was rapidly going downhill with this disease. Shortly after re-connecting, his two oldest daughters got married, and the next year, Chuck became a grandfather. The pictures we saw of Chuck and the wedding party revealed a man who looked like our friend, but yet, there was just something about the look on his face that told us he wasn’t the same man we remembered; something was missing.
This man was not quite the same Chuck we remembered. Alzheimer’s does that. It will take the mind of its victim, gradually squeeze the best parts out, and leave behind someone who still looks mostly like that person, but yet, the eyes that are looking out of their mind are clearly not accurately registering what they’re seeing.
The worst part was how much his children are missing, because the father they dearly love isn’t the same any more. He isn’t able to give them the fatherly advice young women still need from their dads. He wasn’t able to bond with his new sons-in-law and properly welcome them into the family. Although now he still remembers his grandson when he sees him, he will never be able to take him fishing, teach him to ride a bike, go to the park, or spend a Saturday afternoon playing baseball with him, and that little boy will miss out on doing all of the fun things a young boy should do with his grandfather. That young man will never have the pleasure of knowing how special “Grandpa Chuck” really is. He’ll never hear stories about his grandfather’s childhood, because even though many of his memories are based in the past, they are still jumbled and confused, and make sense only in his own memories.
Patty told us details about the progression of his illness, but not without some personal pain of her own. “I do not have bad feelings about the years I was married to Chuck. My only regret is that we couldn’t make it last. I always wanted to be that person who married and stayed that way forever. Had I known then that his problems stemmed from an illness, I would not have deserted him. Sometimes I wonder, if I had stayed, had we worked through things, would the onset of this disease have progressed at a much slower rate? I’ll never know. But it is so unbelievably sad all the same.”
Patty, you did not desert him. You are caring for him now as no one else can. And we all cannot thank you enough for that. I also personally cannot thank you and the girls enough to allow me to share his story, in hopes that other families will read it and understand they’re not alone; that the things their loved ones are doing because of this disease are not that unusal.
Chuck always loved to travel. Even when he was living on only his social security and barely making ends meet, he would get his check, pay a few utility bills, jump in his car and drive somewhere.
Deeper into the Alzheimer’s journey he would take off and drive from Texas to Indiana or Utah, supposedly for job interviews, but there were none. Part of him must have known his money was limited, because during or after a trip, he wouldn’t eat or get a hotel room, even if he drove for three days. He would stop in rest areas to sleep, and fill up on soda and chips along the way. By the third day, he would be in such bad shape mentally that he couldn’t find his way home. Once, Patty had to drive from Texas to Arkansas to get him. He had been found by police, incoherent, at a stop sign in the middle of a national forest. He had no idea where he was; his car was out of gas, and his wallet was empty.
Because of his taking so many of these trips, he would come home with almost no money. When the landlord showed up looking for his rent, Chuck would pay whatever token amount he had left. This amazingly went on for fifteen months before the landlord finally evicted him. Patty went to court with him, because, sadly, Chuck didn’t even understand he was being evicted.
Patty bought a small mobile home for him (so no one could raise his rent) two blocks from their own house, and she and her husband moved him into that. Patty was designated his legal representative to make sure his bills were paid, and would take him shopping for food every few weeks.
A short while later she started getting calls that Chuck was stealing from the local grocery store. He’d stopped eating the food at his house, and only wanted ice cream and donuts. Patty would buy ice cream when they went shopping, but when he ran out, he would steal more, leaving the healthy food untouched. If she gave him any extra money he would spend it for more ice cream and donuts, and when that was gone, he’d go back to stealing. Remember, Alzheimer’s patients do not have any concept of what they are doing; this is not unusual behavior. The Chuck we had known would never, ever, do anything like this.
Three years after moving into the mobile home, Patty knew Chuck could not be left alone anymore.
They found an assisted living facility for him, but three days later, Chuck had become so delusional the facility called and told Patty she had to remove him immediately. He spent three weeks in a psychiatric hospital until a nursing home was found for him. That home was a locked facility, but within a few days, they made him leave as well. Somehow he kept escaping, and one time Patty found him walking up the highway towards where he used to live. He was returned to the psychiatric hospital for another two weeks until they found another secured nursing home in Ft. Worth, from which they were assured he could not escape.
To even have to look at nursing homes, memory care centers, or similar residential care centers as somewhere from which a loved one cannot escape is sadly part of the reality of this disease. I remember all too well one of my uncles being in the dementia/Alzheimer’s section of the local nursing home and having to wear an ankle bracelet so that if he tried to leave an alarm would go off, and he could be stopped. At the time I didn’t understand why such measures were necessary, and thought it was so wrong.
Now I understand.
Friday, a special conclusion, “Remembering Chuck, Part Three”.
Note: If you have a loved one suffering from this disease, please seek out a support group. Read all that you can about it. Ask questions. And above all, continue to love that person. Respect them. Don’t belittle them when they don’t make sense with what they say. They cannot help it. Their world is not quite the same as it was any more.