You Can’t Debate With Dementia

I had an interesting conversation today.

I left The Compound without letting my dad know. I wanted some time to myself. I had an enjoyable time at Home Depot, and then I returned. When I got back, my dad said he wanted to discuss “our situation.” He didn’t say so, but he was angry because I went somewhere without him.

A few days ago, he said he wanted information on vascular dementia, so I wrote up a little report consisting of information from the web plus things from his own history. Then he read it, accepted the truth, and thanked me for my help. After that, elves and fairies flew out of my ears and sang the national anthem.

Be serious. Here is what he actually did: he demanded a second copy so he could make notes on it in order to prepare his defense. I am not kidding. He scribbled a bunch of stuff on it, and today he wanted to discuss it.

He was also upset because I was out of his line of sight for an hour. This is something new. He now feels I must be available all the time so I can respond to his summons within seconds. He says he could fall down and die in a ditch, and I wouldn’t know.

He is correct, to an extent. If he went on a walk and fell down in a ditch, I might not know for a while, but I would figure it out pretty soon, because I can track him on my cell phone. I have told him this dozens of times, but he always forgets. It goes like this:

Me: I’ll know if you have a problem because I track you on my cell phone.

Him: What?

Me: I’ll know if you have a problem because I track you on my cell phone.

Him: Did you say on your phone?

Me: Yes.

Him: How do you track someone on a phone? [his way of deriding me for not knowing what a phone does]

Me: It’s complicated, but trust me. It tells me where you are.

He doesn’t like it when I say things are complicated, because it means I know he can’t understand them.

Him: A phone? You use a phone to talk to people.

Me: I track you on my phone.

Him: What if I need to call you?

Me: You have a phone, but because of your dementia, you can’t remember how to use it, so you have to rely on me.

Him: I don’t have a phone.

Me: You have a phone. It’s on your belt.

Him: You mean this? The Samsung?

Me: That’s it.

Him: That’s not a phone. That’s a device for contacting people.

Me: It’s a phone.

Him: How do I use it?

Me: You don’t need to use it. Just carry it with you.

Him: Write me some instructions so I can use it.

I’m not falling into that trap. He will never be competent with a cell phone again.

Me: You have a manual you carry with you.

Him: Where?

Me: You keep it in your pockets.

Him: Where?

Me: I don’t know.

Him: I don’t have it.

Me: You must have lost it.

Him: Where is it?

Me: I don’t know. I didn’t have it.

Him: Can you get me a new one?

Me: I may be able to download it, but it will be bulky because it will be on typing paper.

Him: Jesus Christ! Can’t you get me a new one that’s the same size?

Me: I don’t know. I can find out.

Him: I’m asking you for something, and you’re giving me an argument!

Me: I’m not arguing. You asked if I could get you a new manual, and I told you the truth. I don’t know.

Him: That’s arguing!

Me: It’s not arguing.

Him: You’re still arguing!

By this time, he has sort of a point. I am now arguing that I’m not arguing. But I was right before he went in this interesting direction.

Me: I’m really not.

Him: Can you show me how to work the phone?

Here’s the thing: he will never be able to use the phone. On a good day, he might be able to read the manual and manage to call me, but most of the time, even with a manual, there is no hope, because he won’t realize he has the phone in the first place. He will never learn how to use the phone and remember it. If he could do that, he’d know how to use it now.

We had the argument about the manual maybe 6 times, and every time he asked the same questions, he behaved as though he had no idea he had just asked them minutes or seconds earlier.

Am I wrong to let him out of my sight for brief periods? No. I can’t sit and stare at him all day because I’m a human being with limitations. There is only so much I can do without losing my mind, and I have other things to do. He might fall down and die, but then he might do that right here in his own bathroom, 50 feet from me. Life will always be dangerous. You can’t make it perfectly safe. You decide what you can do with a reasonable effort, and you hope for the best.

He could fall down and die in a nursing home. It happens every day. The only way to keep him safe is to strap him to a bed.

After we talked about the phone, we had a long, pointless talk about the dementia report. He went through the list of causes of vascular dementia, and he asserted that he couldn’t have it because he didn’t have diabetes and didn’t smoke. He believed it was not possible for a person to have vascular dementia without every risk factor present.

I spent about 20 minutes repeating myself, explaining that he didn’t have to have every risk factor. Lawyer that he is, he focused on the word “your.” The article mentioned factors that increase “your” risk, and he concluded that “your” referred to him personally. He thought the article said he had all the factors. Since he didn’t have every factor, he believed he couldn’t have dementia.

He also denied he had other risk factors, such as high blood pressure, obesity, and high cholesterol. He takes several blood pressure pills every day, he’s nearly 50 pounds above his army weight (he used to be heavier), and he’s on a statin. He seemed to believe that as long as he took pills, the illnesses didn’t exist, and he said he wasn’t fat. While wearing a size 40 belt.

He kept misstating the definition of dementia. He insisted it meant he was “crazy.” That’s absolutely true, if you want to put it in the harshest terms possible, but most people wouldn’t see a dementia patient as crazy. They are forgetful. They sometimes have mild delusions. They can be combative and paranoid. But they don’t run up and down the streets naked, claiming to be Napoleon. Until things get really bad, they can speak and interact with others fairly well. When my aunt finally lost it, she started speaking gibberish and expecting people to understand it, but my dad isn’t there yet.

Most of us think “dementia” means “insanity” until we have to deal with demented relatives. My dad still holds onto the popular definition. “Demented” simply means “afflicted with a reduction in mental faculties.”

He kept insisting we couldn’t have the conversation we were having if he had dementia. I had to let him know that it wasn’t much of a conversation. I told him he kept asking the same questions over and over and forgetting the answers. I said we were talking about things we had talked about many times in the past.

I was very direct, because he needs to accept his diagnosis. If I go overboard unintentionally and hurt his feelings unnecessarily, it’s okay, because he’ll forget it later, and I can adjust my behavior next time. I’ll tell you something incredible. I could put on a chicken suit and walk around the room clucking and flapping my arms, and a week from now, it wouldn’t mean a thing.

The end of the document was a list of his recent hospitalizations. It was fairly long. He said he remembered two of them, but I know that’s not true, because he usually says he doesn’t remember them. He didn’t remember battling the staff at a nearby hospital at 5 a.m. and having to be restrained by security. I remember that just fine, because I had to drive over and try to help.

We have all heard of the 5 stages of grief: 1. denial, 2. anger, 3. bargaining, 4. depression, and 5. acceptance. It appears that dementia screws them up. How can you progress from one stage to another if you keep forgetting what’s wrong with you?

My dad is the kind of person who is generally angry, so #2 is a given. Beyond that, he seems to be stuck on #1. He’s trapped in an eddy, and from time to time, I get sucked into it with him. He decides I’m crazy because I say he has dementia, and then he expects me to defend myself, as though I were the one who diagnosed him and coined the term “dementia.”

My hope is that writing things down will reduce the time I spend going in circles. I want to be able to hand him a document when I see we’re in line for the same ride again. I know it will have some effect. The little notes I put up around the house work, and they’re documents. If, “Stay off the porch,” works, maybe the dementia report will work, too.

There is another strategy, and that’s walking away and telling him I don’t care if he wants to talk (i.e. argue), because we are going in circles and it’s a waste of my time. It works, but I try not to use it unless I have to.

His belligerence is a problem in more ways than one. It wastes my time and tires me out, but it also cancels out any possibility that I could spend time doing something enjoyable with him. If I’ve spent two hours cajoling and being bickered with, I’m not going to suggest we go for a drive. I’m going to go off to my sanctuary for the rest of the day. You only get a certain amount of my time per day, and how you use it is up to you. Once it’s gone, you can’t get it back and do something else with it.

Yesterday we spent two or three hours with a physical therapist. When she left, my dad wanted to go have lunch. No way! I was done. My daily quota had been used up. I had to recharge. To him, her visit was a good time. He got to talk to a younger woman, about himself. They did exercises together, and she taught him things. He was the center of attention. That’s fine, but to me, it was work, so when it was over, I was ready for some recreation.

He doesn’t understand that being with him is work. Every minute of it. There are no exceptions. If we have lunch, it’s work. If we drive to Home Depot, it’s work. If I’m working on the tractor and he wants to stand there and ask questions, it’s work. Work, work, work.

You can’t relax and enjoy life around a dementia patient. They ask questions and make demands nonstop. I can’t even order at a restaurant without problems. He demands that I tell him all about the menu, which he holds in his own hands. I say vague things like, “I’m sure it’s all good,” so I’ll get a few seconds here and there to look at the menu for myself. He likes to have me choose his food for him, so I pick things that won’t cause a problem. I have dishes memorized so I can toss them out without thinking.

I never say, “Gee, it would be nice to do something with my dad.” If I saw him once a week, I would look forward to doing things with him, but I’m always doing laundry, changing sheets, sitting in waiting rooms, being argued with about the same old things, and cleaning up filth which is extremely abundant even by demented-person-house standards. My dad’s hygiene habits were established long before he got dementia, and they are very bad, so they make him a more trying patient.

He has talked about traveling to Eastern Kentucky, for a final visit to the place where he grew up. Can’t do it. You can’t imagine what it’s like to travel with a demented person. He will never travel again, although I don’t tell him that. If I had three siblings to help, maybe.

When the therapist was leaving, I made her spend a few minutes with me alone. I made sure she understood how things were. I told her what unpleasant things to expect from him.

I said he would forget at least 80% of what she had told him (turned out to be 100%), and I said he might forget the whole visit (he did). I told her what he would be like when the company manners wore off. I told her what to expect simply because she was female. I also asked if I could leave them alone together. She understood completely. She said it was important for me to get away.

If she had told me I needed to supervise them, there would have been problems. He may end up having two therapists visit him every week. I can’t take care of him, haul him everywhere, and then sit at home and watch him get therapy. Too much. I would have had to choose between an intolerable new imposition or depriving him of helpful treatment, and I would have chosen myself, because without me, the ship sinks.

One of my challenges is to find a balance between letting an incompetent person run my life and treating another human being like an object. Some days I go too far one way, and other days, I go too far the other way.

It sounds horrible, but it’s not. The more control I get, the smoother things run. Most days, I manage to get enough time to myself to make life pleasant. My dad isn’t happy, but he never has been, and you can’t really be happy when you’re too demented to do anything but still competent enough to wish you could. He will feel better when he comes to accept his situation.

If you’re caring for a demented person, take my advice. Look out for yourself first. If you don’t function, nothing functions, and besides, you still have a life to lead. The person you’re caring for is really just a shell. He has no future, but you do. Your job isn’t to fix him or make his life perfect. It’s to mitigate his suffering until he dies. That’s it.

My dad will be gone soon, but I will not. I put myself first, because in my dad’s case, there is no longer anything there to invest in.

Demented people are like kids that get weaker and less intelligent instead of bigger and smarter, and at the end, they die. I have to keep living and working to improve my future. Sounds harsh, but it’s just reality.