Dementia Update

I feel like providing some updates on life as a caregiver.

When you have a parent who is slipping, you have to make sure his estate is organized so there isn’t a bloodbath after he dies. One thing you have to do is to make sure he has his own representation. You don’t want to go into a courtroom after his death and say, “I did this or that because I figured it was a good idea.” You want to be able to point to his attorney and say, “He had his own counsel, and he did what he wanted to.” If a decedent’s estate plan is clearly his own, it will stand up to challenges. Besides, letting them make their own choices is the right thing to do.

My dad has an attorney, and one of the things he advised us to do was to take my dad’s properties out of his name. I have been going about this over the last couple of months. It’s finally done. It could have been done sooner.

I was reluctant to take the attorney’s advice, so I didn’t move as fast as I could have. Here’s the reason: I believe God has told me my dad will not last long after everything is in order. My dad is very stubborn about accepting salvation. I think God has accepted his decision not to repent and experience a long, redemptive period as a saved person prior to his death. I believe my dad will not accept salvation until death is staring him in the face, and I think God is not going to keep prolonging his life. It would serve no purpose.

This is consistent with his medical prognosis. He is several years into a type of dementia that typically kills within about 5 years of diagnosis.

When I worked on getting the properties fixed up, I felt like I was pushing my dad closer to the grave. I felt as though I had a certain amount of power over the amount of time he had left. You can understand why I would find it hard to get things wrapped up.

My dad’s type of dementia progresses in steps. He has plateaus during which things seem static, and then he changes perceptibly overnight. He is worse than he was a month ago. He has started shuffling very slowly now, and he sometimes has to be helped out of chairs. Taking him to the grocery wasn’t all that difficult last year. Now I have to move very slowly in the aisles. He takes a long time to move through a store. His feet move quickly, so he sounds like he’s marching, but his steps are miniscule.

I’m wondering if he needs an electric cart. He refuses to use the ones stores provide, though.

His manners are getting worse, although not as quickly as his other problems. He has always enjoyed blowing his nose on the ground and sidewalks, with people all around, and he has gotten worse with age. The other day he blew his nose on the floor of a restaurant. No one saw him, thank God. I had to let him know that if his manners deteriorate too much, I won’t be able to take him to restaurants because it won’t be fair to other people. In the past, when I reminded him that bad manners could result in his becoming isolated, he would say, “Who cares?” Now he listens, but I don’t think he can change.

I don’t know what I’ll do when he loses all restraint. I’m not going to be a public spectacle. That’s too much to ask. I’ll have to quit taking him out. It’s better for him to be bored and isolated than for me to be run out of every restaurant in town.

One of my big challenges is limiting his intolerable behavior. He rubs spit on counters in order to clean them. He eats food out of packages with dirty fingers and utensils. I don’t even want to discuss his bathroom. So far I’ve been able to find ways to reduce my exposure to an acceptable level, but when it gets to be too much for me, I’ll have to ship him out. I can only stand what I can stand.

He is also inclined to be more clingy these days. He keeps asking me to come up with some kind of device that would allow him to summon me to his side instantly, 24 hours a day. Of course, that can’t be done. He can go to assisted living, where they can confine him and keep close tabs on him, but a human being who has other responsibilities can’t pop up on command like a genie. Sometimes I have to mow the yard. Sometimes I have to run errands. I have to handle business. Often I need to be by myself, just to avoid having the same argument for the 10th time in a week. Until he’s ready for a new standard of care, he’s going to have to risk short periods when he’s out of my sight.

I don’t think that’s a big problem. A certain amount of risk is unavoidable, and even in a hospital or a home, it would be impossible to protect him every second. His best friend from law school died in a hospital. I think I’ve written about it before. He got up to use the toilet because he was too mule-headed to call for help, and he fell and hit his head, right there in his room. I don’t think my dad is any less safe here than he would be in a home, and he gets to enjoy his property and spend time with me.

I can get him one of those panic buttons old people carry, but he won’t remember what it is. He has a cell phone, and he can’t use it.

I think he’s going to come unglued when he has to move. He wants to be with me. If he goes to a home, I will probably see him for a couple of hours three times a week. You can’t attend to your responsibilities if you spend half of every day at an assisted living home.

It’s hard to decide how much of myself to give to him. I’m entitled to a life. I’m not part of his body. But I want to do what I can.

He’s going to suffer. That’s inevitable, no matter what is done for him. He didn’t play his cards right in life, so he ended up with brain damage and a dysfunctional family that can’t do much for him. My sister is gone, and if she were around, she would make things so much worse he would want to die. I have no wife to help me look after him. He has no grandkids to help him pass the time.

I can’t insulate him from all consequences, and that isn’t my fault. No one is obligated to give a parent a perfect world. I couldn’t do that even if I had five married siblings sharing the load. But no one has provided me with clear rules about what to give and what not to give. Am I doing enough? I hope so. I have to make choices all the time.

He’s not able to enjoy reading any more, apart from newspapers and magazines. He gets bored watching TV. At the same time, he’s intelligent enough to need activity and things to think about. That’s the problem.

He’s in an impossible situation. Even if he were surrounded by servants all day, and they did exactly what he wanted, he would still be unsatisfied, because he simply can’t do what it takes to keep himself occupied and content. That’s the cold reality of it. He is going to suffer, no matter what anyone does for him. It’s not the nature of the world that makes him suffer. It’s the disease itself.

The only real remedy would be to be magically transformed into the able person he was 25 years ago. He wouldn’t be happy, because he was very, very unhappy then, but he would be unhappy for reasons he would like better.

He’s bored and lonely, and he’s angry because he’s bored and lonely, but he can no longer do the things a person has to do to maintain relationships and stave off boredom. He can’t enjoy books. He can’t use a computer without someone sitting beside him the whole time. He can’t ride his bicycle or even a tricycle. I don’t think he could manage shuffleboard because of his balance.

In a facility, he would be doing what he does here. He wouldn’t be able to play games. He wouldn’t read books. He wouldn’t be able to focus on hobbies. He might get more conversation, though. That would be a plus.

I’ve learned something disappointing: when I feel like I’m not handling things well, and I call in “experts,” their solutions are generally worse or no better than mine. The main difference is that we have to pay them. When you lose your mind, you’re not going to be able to go to a doctor, write him a check, and get all your problems fixed. There is no safety net out there, waiting to take all your cares off your back. There is no system. Your children or spouse, with no training at all, will be much more helpful to you than professionals. Even if they screw up.

My dad let himself down. His doctors let him down, not that they could have helped had they done things right. For all my mistakes and failures, I’m doing a better job than anyone involved. I’m not bragging. I’m making a disturbing observation on the way the world works. Get ready for it. If you’re obese and you drink too much, this is the paradigm you’re going to be dealing with. Hope someone in your family loves you.

I’ve come to believe we do too much to keep demented people alive. We can’t fix dementia itself, but we can keep people on drugs that keep their bodies working after their brains have shut down. I wonder why we do that.

My dad will never practice law again. He will never have a date or another wife. He will never travel. He won’t make any new friends, because he would keep forgetting who they were. Is it a good idea to keep feeding him pills to keep his blood pressure down and his arteries clear? I wonder if I made a mistake when I got his doctor to make him stop drinking. Maybe if he had continued, he would be with the Lord now, in a perfect body with a clear mind.

I pushed him to get a CPAP a few years ago. I thought it would prevent dementia. That didn’t work out too well.

It’s strange; I procrastinated with his property issues because I felt like I was killing him by getting things in order, but I feel funny working so hard to keep nature from taking its course, when the only result is increased suffering.

I have one major goal for him, and it’s not a cure. I just want him to receive salvation so he can go to heaven. I want him to accept Jesus. After that, what happens during his remaining time on earth will not be that important. He can’t be made happy. He can’t be made strong. He can be saved, however, so that’s what I pray for.

Learn from my experience. You are going to die, so get ready. Think of your spouse and kids. Prepare so everyone can relax.