Big Day Draws Near

This is a former draft I published months later. The publication date, January 9, 2019, is approximate.

Things are heating up here. My dad is determined not to go to assisted living, and I have started speaking very bluntly to him about the necessity to get it done. All his life, people have walked on eggshells around him, so he is not happy to hear me lay things out for him without flinching. In the past, he could shout people down or threaten to fire them, but now he has to engage and be confronted just like the rest of us mortals. There is a lot to tell him, because he has deteriorated so much. There are many clear indications that he needs to move.

When a parent first shows signs of dementia, caring for him isn’t a big deal. Maybe you put his pills in a dispenser for him, and you help him when the computer confuses him, but he still pays his own bills and drives to stores. That’s the left end of the spectrum. On the right end, just before death, there is an area in which you become a lot like a zookeeper. Maybe 30% of your effort is dedicated to things like managing finances and driving him to doctors. The other 70% of the time, your activities involve cleaning and sanitizing, and I don’t mean sweeping up cracker crumbs.

It’s stressful. Having to remove offensive materials and sanitize everything by yourself over and over takes its toll over time. To use a popular word, the lifestyle is not sustainable. Ways have to be found to end it before the caretaker has a nervous breakdown.

We are pretty far off to the right now. He can still talk. He knows who I am. He is still capable of a certain level of reasoning. He can’t look after himself at all, however. No driving. No using the PC. No using the cell phone. No walking except in the house and at medical facilities. No cooking. No cleaning. No laundry. Nothing business-related at all. He no longer has the ability to do any of these things.

I can’t take him out to lunch any more. I was taking him to restaurants three times a week, and sometimes I took him grocery shopping, but there is just no way now. It would take him 10 minutes to walk from the car to a table, and awful things might happen while we were out. I never put him in the car unless I have no choice. I have gear to protect his seat, and I have a big gym bag full of disaster supplies, including a complete change of clothes for him.

He sleeps fourteen or more hours a day. It seems like it depends on the medications he receives; I think some drugs keep him awake. The other day I had to get him sleeping pills. It seems strange, getting sleeping pills for someone who sleeps as much as he does, but when he can’t sleep, he wanders around at night and in the morning. He wakes me up, and he’s likely to get into mischief or fall.

He got up early a couple of days ago, and he kept asking me if he had any obligations to take care of. He said he was worried about his schoolwork. He was afraid he might have exams coming up. I couldn’t convince him that he didn’t have exams any more. I asked him about it the next day, and the whole thing seemed crazy to him. The delusion had passed. There will be others, though.

He made me very nervous when I gave him his first sleeping pill. To say it worked would be an understatement. It didn’t just make him drowsy. He seemed like he was stuck halfway between sleeping and waking. I had to take him to his bedroom in a wheelchair and roll him into bed. I was afraid he would quit breathing during the night, but that didn’t happen. Evidently it didn’t affect his breathing at all.

Unfortunately, he is still able to argue energetically (in well-worn circles). The main thing he argues about is his impending departure. He doesn’t want to go live with “old people” at an ALF.

I had to let him know that a lot of the residents were in better shape than he was. He can’t see himself as he is. If he were living at the ALF, he would be around people who are stronger and peppier than he is. After all, they’re not all demented. He would draw energy from them. He’s not interested. He says he will stay here until he dies. He doesn’t understand that this isn’t an option. Unless he dies suddenly, he will get so weak I’ll be able to have him moved to a facility without any real resistance.

My friend Mike, the hospice exec, says he will be much better off if he’s already in an ALF when he reaches the point where he has to go to a live-in hospice. The ALF will be able to warn me that his needs are changing, and I’ll have time to pick a nice place and work things out. If it happens while he’s still here, there will be a rush, and the choices may not be as good. Fortunately, barring a sudden change in the very near future, that’s not going to happen. He’s going to an ALF as soon as I can get him to submit.

It’s disheartening to hear the things my dad says about me now. He says I’m selfish and that I don’t love him. He says I’m obligated to be his caregiver because I’m inheriting from him.

Mike compares dementia to drunkenness; he says alcohol is truth serum, and dementia works the same way. He’s right. My dad keeps getting worse at hiding the disappointing parts of his personality. His less-laudable thoughts pop out more often now.

I am now very direct with him. I don’t berate him, but I no longer worry about offending him. When he tells me I’m a bad son whose job is very easy, I remind him that he has never taken care of anyone in his life. He had two children, and he has never changed a diaper. When his mother’s health fell apart and caused her to move into a home, he did nothing for her, apart from giving advice on getting government money. He didn’t pay her bills. He only visited twice. He never did her laundry or changed her bed or paid anyone who did.

He didn’t take care of my mother while she was dying from cancer. He didn’t bathe her or take her to the toilet. He went on business trips and left her by herself. While I’m on the subject, my mother said my sister never came by to help. She wrote about it in a diary, which my sister stole and threw out. My sister is actually proud of that. She bragged about it.

If I left my dad alone, he would die in a week.

When my sister got lung cancer, he gave her financial help, after securing a mortgage on her house, but that was all he did. He never went to the hospital with her or met her doctors.

When I was born, he was out playing pinball. He didn’t feel like waiting in the hospital, so he left.

When he tells me I have to be his full-time caregiver forever in order to be a good son, I remind him of these things. It’s very good to clear the air. There is still enough of him left to gaslight me, so it’s important to me to let him know I’m not taken in. You shouldn’t harangue parents about their failings, but when one tries to gaslight you, you need to state the truth. Ordinarily, I don’t dredge up things from people’s pasts and throw them in their faces, but when they gaslight and try to make innocent people out to be the villains, they obligate me to respond.

Referring to my status as the only beneficiary of his will, he told me I was well-compensated for the unpleasant work I do. That was ugly, somewhat ruthless, and untrue. I asked him if I had to continue cleaning up after him and waiting on him in order to inherit from him. I reminded him that I inherited from my mother’s side of the family without doing anything at all for them. My grandparents never demanded anything from me in exchange for what they left me. Who does that? It would be sick.

He told me it sounded like I didn’t enjoy spending time with him, and he asked me if that was the case. When I was younger, I flinched when he said manipulative things like that. Abusive people count on their victims to back down and let them promulgate their fantastic versions of the truth. Today when my dad asked me that question, I gave him what he asked for. I said I didn’t enjoy spending time with him. I said that when I was with him, I was always cleaning, working, or being yelled at. I said this was the result of his refusal to let me find him better care. When you’ve spent the day having someone curse at you and make revolting messes you had to clean up, you don’t feel like getting together in the evening for s’mores or family meals (which I would have to cook).

One great thing about these conversations is that he forgets them. Some of the sense of what we talk about may stick in his unconscious mind, but right now, he doesn’t remember the discussion we had this morning. Not unless this is an exceptional day. Sometimes he gives me ultimatums and makes threats. Sometimes he tries to get me to agree to ridiculous schemes in which we will sit down with a yet-to-be-named “expert” who will tell me he doesn’t need an ALF. It doesn’t bother me, because I know his plans are like sandcastles. They collapse in short order and leave no traces behind.

It may seem strange that I argue with him at all, given his memory problems, but there are two good reasons for telling him the truth. First, it does me good to confront him and shut down the gaslighting. Second, even though he forgets conversations, it’s still possible to have a little influence over him. If you repeat things enough, little things may soak in. He needs to hear about the benefits of assisted living and the untenability of our current situation, because it may push him toward a different mindset.

I try not to have long talks with him. One way to end a conversation is to tell him we’ll do whatever it is he wants to do, as long as he reminds me the next day. Because he tells himself he has no memory problems, he agrees. He feels like he got a concession out of me, and I feel good because I know we’re done.

Sometimes I just walk away and tell him I’m all done talking with him, but I prefer to work things out so the conversation ends in a more normal manner. I don’t really enjoy leaving the room and waiting for his shouts die down gradually.

I think most people lie to the demented. It’s more efficient. I don’t do that. I could tell him he’s right about everything. I could take him to the ALF for “the weekend” and then leave him there for good. I don’t believe a Christian should lie. If I choose to be truthful, God will help me.

I am hoping to hear from the ALF people tomorrow, and if God is with me, my dad will be a permanent ALF resident before the end of the month.

I wish things had turned out better for him, but I can’t help looking forward to the end of the distasteful behavior and disgusting jobs. As his abilities have declined, I’ve been getting little tastes of the future, and they are tantalizing.

I got out of the habit of reading newspapers because he likes to read in the bathroom and throw them on the floor by the toilet. After that, who would want to touch them? Now I’m reading them again. He can’t walk to the mailbox easily, and he gets up very late. I get the papers before he gets up, and I read them myself.

I do the puzzles. I missed that. He used to do them himself, but now he can’t get through them very quickly, so he doesn’t need all of them. I keep an eye on his puzzle backlog, and when he runs low, I pass on a puzzle and give it to him when I’m done with the paper.

I don’t mark up the Jumbles. I do those without writing anything, so I don’t have to mess them up.

I can go to the grocery alone now. I love that. I don’t have to stop over and over in the aisles and let him catch up. I don’t have to worry about him falling in the store or having some kind of hygiene problem.

Some day soon, I’ll be able to use the living room. I’ll be able to burn the two chairs we got from my late aunt in 1994. Right now it’s part of his domain. He has a lift recliner and a TV table. He eats his meals there. When I go anywhere near the living room, he shouts, “STEVE!”, and insists that I drop everything to attend to some whim. In the future, I’ll be able to sit down there and relax. I’ll be able to get a couch.

I’ll be able to leave home for more than three hours. I’ll be able to travel without the ordeal of finding him temporary care. I’ll be able to go to Miami to wrap up our affairs there. I’ll be able to have friends over without making them come to my upstairs lair. They won’t have to worry about being insulted or hit on when they see my dad. They won’t have to deal with him monopolizing the conversation as though they were his friends and not mine.

The house won’t stink. I won’t have to wipe the kitchen down with alcohol, glass cleaner, and sanitizing wipes every time I go in. I won’t have to worry about stepping in mucus or worse. I’ll be able to take his mattress to the dump.

His shadow over things has been receding for some time. First he lost the ability to jump into business affairs and cause problems. Later, it became hard for him to deal with stairs, so I got the second floor of the house all to myself. Then the other things started to fall into my hands.

Maybe once he moves, we’ll be able to restore our relationship to a degree. It will be nice to be able to sit and talk with him without a mop in my hand. I’m assuming he’ll cooperate. He may be too consumed with vengeance to have a normal conversation, or, if he resists too long, he may have no idea who I am.

It’s too bad he isn’t declining with more grace. Not my fault, though. And it was inevitable; he ordained it himself. Even now, I think he could do a good deal better if he wanted to.

When you’re an extremely angry, domineering person with a huge ego, and other people have spoiled you all your life, you are pretty much guaranteed an awkward descent toward death. You can spend your youth and middle age in denial all you want, and you can push other people to accommodate you, but there is no denying disability, death, and the reduction in clout that accompanies them.

The only important thing left to do in his life is a rapprochement with God. I am hoping Christians will work with him at whatever facility takes him. God keeps telling me he will be saved, so I know there is a plan.