I struggled with this post. I struggle with thinking about it, putting it into words, and putting those words on paper. In black and white on my computer screen, they seem so much simpler, so much less of a big deal. But Alzheimer’s disease is a big deal. It affects about 5.5 million people in the United States alone. Most people think Alzheimer’s is something old people get, often referring to it as “Old Timer’s”. However, of those 5.5 million, about 200,000 are less than 65 years old1. My dad is one of those with Early Onset Alzheimer’s Disease. The really unlucky ones are in their thirties.
I wish I had started writing about it sooner. I wish I had more time back. I wish I had spent more time at my parent’s house after we were given the diagnosis. I wish I had had more time to spend there. I can tell you what I remember about the beginning, but I didn’t keep track then. I guess I didn’t really think about it much.
For my dad, he started forgetting to do little things, and it got harder for him to see. I grew up on a dairy farm, so taking care of animals was what he did. We had to sell the dairy herd and he switch to beef cattle and got a job as a landscape laborer. One spring, he didn’t get called back to work. That’s what really got my mom to notice. His boss said he was, “dangerous, and forgets to do things a lot,” and he didn’t want him to be a risk to the other guys. Well, after that, he had his first trip to a neurologist. My dad was 56 at the time. His neurologist at the time said he had been doing this type of work for 30 years, and could count on one hand the number of patients under 60 he’s diagnosed with the disease. We’ve been told Alzheimer’s disease works like sliding plateaus. A person will cruise along at a level, then something will happen, either externally or in the brain, that will cause a rapid decline to the next lowest plateau. This continues on until the person gets to where my dad is now.
My dad started forgetting to feed the cows, MY DAD, the man who had spent his whole life farming and taking care of animals. HE forgot to feed the cows, the dog, all of them. That’s when we loaded the herd up for the last time. At this point, I was just finishing up my senior year of college, and so I wasn’t living at home. I didn’t see the small changes. He was having a hard time tying his shoes. He was getting tunnel vision. I didn’t know it at the time, but he couldn’t remember how to sign his name, or he thought he was, but all he did was make scribbles.
I got married that summer. He was smiling walking me down the aisle, but he couldn’t remember what to say when the officiant asked him “Who gives this woman away?” My mother softly whispered from the seat behind him. My father daughter dance was mostly me trying to keep my dress out from under my dad’s feet so he didn’t slip and fall. But at least I had one. Some people don’t get even that. He did remember the day and that it happened and he was there. He even usually remembered Corey’s name. I don’t know that I can say the same for my sister who got married just two years later. I had to leave during her father-daughter dance, and wait outside until it was finished. I felt like such a bad sister. That was 2014.
His disease progressed ever onward, as it does. I think it was about two years later that my mom decided to move off the farm. The house was too big, and too much work for her to keep up with, and also take care of my dad. She was his caretaker at that time. After they moved, he had a slight decline, because he was in a new place and had to learn all over where everything was. We were tossing around ideas, because he was getting to be too difficult for my mom to handle at home, by herself. There is a program here called Lutheran Senior Life that is designed to help seniors stay in the home longer. For my dad, that meant a nurse aid would sit with him for a couple of hours in the morning while my mom got ready for work, a bus would come get him and take him to the center, he would engage in activities there, he would ride the bus home, and an aid would sit with him for another couple of hours at home until my mom got home from work or errands for the day. This was a tremendous help to my mom, because she didn’t have to worry about him while she worked.
All seemed to be going well, then he started getting violent. My dad was not a violent man, unless he had just been kicked. Then he could string together curses in very interesting patterns, many that I’d never heard before. Even still, he never hurt anything more than the air or a bale of hay. My mom said he would storm around in the morning swearing he needed to milk the cows and couldn’t find the barn. The morning he tried to lift the microwave to do who knows what is the day we started thinking about something safer for my mom. One day, at the center, he tried to flip a table over with an old lady laying over it. She was trying to keep him from flipping it. He was placed in a behavior unit at a local hospital. That’s where he really started to decline.
Because of his behavior at the center, he was put on many different behavior modification medications to try to find a combination that worked for him. They discovered that, almost by accident it seems, he had a UTI. After treating that, he calmed down significantly and they wanted to send him home. Due to his previous history of temper flare ups at home, the center and my mom decided it wasn’t really safe for him to be there with her. We did the hard thing. We decided to place him in a nursing home. That was about a year ago. When he first went in, I could go and talk to him, and if I told him a story about a time I did something stupid on the farm, he would know it was me. I’ll never forget the day I told him the story and he didn’t remember. I still go to see him when I have time and when I can work myself up to going. Which is much less often than I would like, and makes me feel like a terrible daughter.
My dad is now 62 years old. He is totally chair bound, and really unable to stand on his own at all at this point. Part of that is due to the disease, and part of it I think to unfortunate situation surrounding senior care where places are severely understaffed. His legs are sad little sticks poking out from his torso. He does not and cannot eat on his own anymore. His food is blended and then thickened to prevent aspiration. He basically just sleeps in his bed chair all day with wraps around his feet to prevent sores. When I go visit him now, I can’t get him to wake up, so I just sit with him for about an hour, talking softly when I can, and then leave. I don’t think he even knows I go.
That’s my dad’s story in a nutshell. My daddy, the strongest man I knew, has been reduced to a very skinny, very tired, lost, confused soul, who probably thinks we’re all either dead or have abandoned him. Which, to be honest, is probably the worst part for me. To watch someone who was once so strong, and farmers are really strong, whither and waste away into this shell of what he once was has been so hard for us. This fall will be our third time to walk at a Walk to End Alzheimer’s to benefit the Alzheimer’s Association. If any of you out there are going through something similar, I’d be glad to talk. Or if any of you are just curious about it, it might take me a minute, but I’ll be glad to talk to you too. I’m going to include acouple of links to check out too, for anyone interested.
Amy’s Walk Donation Page if you’d like to support me and my dad.
- “Latest Alzheimer’s Facts and Figures.”Latest Facts & Figures Report. Alzheimer’s Association, n.d. Web. 30 Apr. 2017.