Denial and Avoidance of My Father's Dementia

It was around 2007, late in the year, when I first noticed signs that something was going wrong with my father. He was a man that wasn't prone to talk that much or too complain that much either. When I came home to visit one day, he was sleeping on the couch, and he was crying out as if something were attacking him. This bothered me, it didn't seem right, he was not usually crying out in his sleep, he might have snored to bring the house down, but he rarely cried out. My mother told me he was doing it more and more. The odd things kept occurring and each time I saw him I would notice small things but not really anything that would lead me to believe he wasn't OK. He seemed forgetful sometimes, and he had a look in his eyes that sometimes appeared blank and glassy. I have six brothers and sisters and so the small signs I had been noticing, they had noticed other signs, and since we were rarely all together it just seemed like the topic never came up that there might be something wrong with our dad.

When we began to really see signs that there was something wrong, most of the kids just thought it was stress and nothing else, and he would be fine. He would be having a conversation and then suddenly come off with something from right field and had nothing to do with what we were talking about. Again, most of us (the kids) just chalked this up to stress. He was in the construction industry as a contractor in a very bad economy after all. And, to be honest, he had always been such a strong man, up at the crack of dawn, none of his sons could work with him at his pace, we couldn't admit to ourselves that this man could not be alright.

He started seeing things, he would comment about seeing little children in the room, and we would sit there and look around. I will be the first to admit it was a little unnerving, my father would be talking to me about something ordinary and then he would stop and say something about those little children were here again. This progressed into not sitting in certain chairs or talking too loudly because the little children were asleep. Then it turned into something else, the children left, and he began to see people who were there to steal from him. He had once called the police in the middle of the night to report someone breaking into his home, and when the police got there, he explained to them that someone had broke in and took all the drywall off the walls and had just left the exposed studs and the wiring hanging down. When the police pointed out there was nothing wrong with his walls, he became agitated that they didn't believe him.

We couldn't keep him still. He always wanted to be on the go. He would travel between his kid's homes and often would just turn around and drive back without ever getting out of the vehicle. He didn't like to be alone, at all. It progressed to where he would be calling us on our cell phones to ask us to bring him a soda, but when we got there, his refrigerator was full. This worked with food as well, he often claimed that the "people" had come in and taken his food and he was totally out and starving, when we arrived at his house, his food was there, he was fine.

It was a strange experience, so often he appeared totally fine, he was taken to a doctor several times and he was always suspicious that he was going to be locked up in a hospital or placed in a nursing home. So when he was in the doctor's office he would often refute things that his children said and would appear totally fine, in control, nothing wrong. The doctor's would be at a loss because they couldn't force treatment on someone that didn't want it and were in their right mind to refuse it. So there was a long period during all this that the children had to try and convince him that he had to get treatment when he definitely did not want it.

He was growing weaker, and his delusions were increasing, and it had gotten to the point where we had to take his keys from him. The hardest part was telling him that no one was going to steal the tools out of his truck, and one of the brothers had made the comment that he wouldn't need them anymore. That struck him hard. He was at a very low point at this time, he was gaunt, weak, talking in a low whisper, and often wandering about aimlessly. He was not taking any medicine because he was suspicious and also often forgot them.

When he couldn't be left alone anymore, we finally convinced him that a stay in the nursing home was for the best, to try and see if he could get better. He had said numerous times when he was well that he would rather be dead than be in a nursing home. He was taken to a neurologist after he had been there for about two weeks and he was diagnosed with Lewy Body dementia. The doctors told us that it was a progressive disease that usually took the person in about 7 years.

During his stay at the nursing home, he was given his medicine like clockwork. On his birthday, the kids decided to take him out and about for the day, and I hadn't seen him in several weeks, the last time I had was when he was gaunt, weak, as I described before. I was expecting the worst. When he came up, he was moving slowly still, but he said hello, and he didn't once stray and he appeared to be in control of his thoughts. I was floored by it all. The hardest part for me, is seeing my dad reduced to this state, and so I had been avoiding seeing him, I didn't want to admit to myself that there was nothing that could be done. When we talked that day, I realized how big a mistake I was making. Now, Dad is loving the nursing home, he has activities like a fishing trip he took two weeks ago, he claims he had caught a shark (which we all know he didn't, it was actually a catfish) and he is also sitting and talking with people his own age about the old days.

The thing I try to remember is that when he strays, just go along with it, he often doesn't even realize what he said. That's one of the best pieces of advice I can give, don't argue when he says something out of the ordinary, just go along with it.

It's hard, you can't stop the disease, control it, or try to correct it. You have to admit to yourself that there comes a point where you have to give in and get this person help. When it comes to large families it's an even harder process because you have to convince each other that it's the right thing to do. The hardest part is the feeling of hopelessness and weakness and the point where you feel like you aren't doing enough for him. The other piece of advice I can give is that a person suffering from this type of dementia is often on a downward spiral and it is up to those healthy ones around him to get him to someone who can take proper care of him, too often, some of my own family included, we think we know what's best for our loved ones and it can lead to unhealthy results for them.

I first fought against the thought that my father could have dementia, I also avoided confronting the fact with him, I buried myself in work and limited my interactions with him. It's only recently that I have come to realize you have to first confront the disease that is afflicting your loved one and then you will learn how to cope with it.