Childhood in Reverse

When you look after someone who has dementia, you will get hit in the face with surprises. I don’t think it ever stops while the patient lives. It’s impossible to predict all the things that will come up.

Demented people start wearing dirty clothes over and over. They decide they don’t need to bathe. They suddenly need diapers. They have to be denied access to car keys. They may start “sundowning,” becoming agitated and paranoid for no reason after sunset. You may have to elder-proof your house, hiding things that may get your patient in trouble. It’s like having a child who becomes less capable instead of more.

You will fail to take care of every problem, because often, you won’t know what’s happening until it’s in full swing. Example: the other day I realized I didn’t know what my dad was using to shave. It’s not natural for me to check on another man’s razor every week. He did it himself for about 70 years. I took a look, and I think he may have been using the same blade for weeks. I got him a bag of disposable razors, opened it, and left it on his bathroom counter.

Thank God he can still shave.

This week, he surprised me again. He started asking strange questions about toenail maintenance. He asked what he should use to trim his nails.

He has two toenail clippers, but he didn’t know it. I had to tell him where they were. He got them out and went to work, and he couldn’t cut his nails. He asked me to help. I thought he was just clumsy because of dementia, but I found that his toenails had grown thicker. The clippers don’t work very well.

How was I supposed to see that coming? I’m old, and this is the first time I’ve heard of anyone’s toenails getting thicker.

I checked the Internet, and sure enough, this happens to old people. I don’t know if it’s a fungus or what, but it’s common.

I had to spend two hours looking for a podiatrist. His primary care doctor refused to refer us to one. I don’t understand that. I’ve never had a doctor refuse to recommend a specialist. Referrals help doctors make money. Usually, they love to network.

I checked reviews, and I found that some of the local podiatrists were not popular with their patients. I read about rude receptionists. I read about dismissive podiatrists who bloviated at length and didn’t listen.

I’m not sure how a podiatrist can get a big ego. They’re just barely doctors. They don’t go to medical school. They go to podiatry school, which is not the same thing. I can tell you without researching that they do this because they can’t get into medical school. That conclusion is just common sense. Anyone who has the ability and credentials will try to get into medical school, not podiatry school.

I went to a podiatrist once when I was a kid. I had a wart on my foot, and my mother wasn’t having it. He put salicylic acid on it and waited for it to rot, and then he scraped it out. While he worked on me, he said gross things to my mother. He discussed his daughter’s female problems, and he kept telling us the little core of the wart looked like a sperm cell. He seemed to have an unprofessional interest in my mother, and he may have thought making icky remarks about sexual matters would put thoughts in her head. He kept an oily smile on his face while he spoke. Very strange. Anyway, he was extremely pompous, even for a doctor.

In my podiatrist search, I found a couple of doctors who looked okay, but they couldn’t see us for about two weeks. I couldn’t believe it. How can a podiatrist be that busy? Besides, we’re talking about a patient who can’t remember anything. My dad is going to be asking me about his feet several times a day until he gets treated, and if they can’t fix him in one visit, he will ask me about his feet every day until the symptoms go away. On top of that, God only knows what he might do to his toes while my back is turned. I can’t wait two weeks.

I gave up and called a place with mediocre reviews and a couple of doctors whose exotic-looking names put them solidly in the class of people who could not get into American graduate schools. Surprisingly, they gave us an appointment with a doctor whose last name is English. He will look at him on Monday.

This is a funny town. I can put my dad in an assisted living facility in two days, but getting help with an ingrown toenail takes two weeks.

He has also surprised me with sudden problems preparing food. Up until last week, he was able to use the stove and microwave. He made his own breakfast every day. The last time his occupational therapist came, she noticed he was having difficulty. Yesterday he tried to scramble eggs, and he set off the smoke alarm.

It was quite an experience. The alarm company called three times, using different numbers. I spoke to them by cell phone, and I gave them the code and told them everything was fine. Then they called our landline, which I never use. They told me the fire truck was on the way. Apparently, their policy is to ignore anything you say over a cell connection. They told me the had to hear from us via the “residence phone.”

I was planning on getting rid of the landline. I only got it for my dad, and sooner or later, he will stop caring about it. Now it looks like I have to keep paying for it in order to avoid visits from the fire department.

I got my dad some microwave breakfast food, and today we prepared it. We got Jimmy Dean’s McMuffin knockoffs. It was not a great experience. My dad had trouble with the wrappers and so on, and he complained about the challenge of getting the muffins ready to eat. I had to help.

Now what do I do? Maybe it’s time to start fixing him breakfast every day. If so, it’s going to have to be something quick that doesn’t make a big mess.

He also needs new shoes. Last year, I got him two pairs of top-notch waterproof slip-on shoes. They worked great. He needs tough, waterproof shoes because this is a farm, and he likes to walk. Suddenly, however, he is having problems putting the shoes on.

I can’t think of any shoe that will slip on easily and also stand up to the rigors of farm life. I suppose I should buy him slip-on sneakers and get used to replacing them.

Last week, I had to get him new pants. He hates throwing anything out, and his old pants were not looking good. He kept asking me about ways to fix them. I took him to the mall, and we got him 5 new pairs of no-iron pants. I should get him a few more.

I learned something distressing. The baggy, cheap-looking grey pants he had been wearing frequently turned out to be Zanellas. The last time he shopped for a blazer and pants, almost 20 years ago, I sent him to a high-end shop I used, and they sold him the pants. Zanella pants are handmade in Italy. They cost about $250 when he bought his. I had been throwing them in the washer over and over because it never occurred to me to check the label. I had to put them in the trash.

I had a strange thought: would he have decent pants for his funeral? Then I remembered his will. He insisted on cremation. I guess he can do whatever he wants with his dress pants.

When he dies, I am not going to buy a $10,000 coffin and fly it to Kentucky so it can be burned. His will forbids that, but I wouldn’t do it, regardless. His sister’s funeral taught me some things. They put her remains in a tacky plastic box that looked like a beer cooler. You can check something like that as baggage, and it probably costs under a hundred dollars, even with the shameless funeral home grief-extortion premium. I can’t see going with a plastic box, but I’m sure there are tasteful options that are far better than a coffin.

When my dad dies, I’ll be handling everything myself. I won’t have people to assist with the arrangements. I will look for options that make the process easier. Omitting the enormous casket will certainly help. I’ll be able to carry him to the funeral home myself, straight from the baggage claim.

I would never permit myself to be buried in an expensive coffin. It goes in a hole where no one will ever see it after I’m gone. You might as well put a gold Rolex on my chest and bury it with me. Idiocy. Wealth is for the living. The dead don’t own anything, and they aren’t here to enjoy wealth.

My mother’s coffin cost $7000. It was beautiful. I haven’t seen it since 1997.

I don’t like cremation, because God doesn’t like it, but I’m very much in favor of cheap coffins.

I need to sit down and make a list of bad things that are likely to happen as my dad declines. It’s shocking that websites for caregivers don’t do that. It’s such an obvious need. Dementia patients have similar experiences, so the changes are very predictable to people who have already seen them. Why not make a simple list so people can prepare themselves?

No one bothered to make a list for me, so I will do it myself. Maybe I’ll post it here so other people can find it.

Does it seem morbid or callous to talk about his end so bluntly? It shouldn’t. My dad has a fatal disease, and he’s not going to live long. If he had a brain tumor, no one would fault me for making preparations and discussing contingencies candidly. Dementia is different. People pretend it’s not a terminal illness. They live in denial, and their doctors encourage that.

Vascular dementia kills pretty quickly. It’s not like Alzheimer’s, which can take over a decade to do its work. You get your diagnosis, and something like 5 years later, you will probably be gone. There are a lot of cancers that take longer to kill, yet people see vascular dementia as a tolerable chronic condition, not the death sentence it really is.

I don’t play around with the facts. I have no relatives whose feelings might be hurt. My mother is gone. I have enough problems without jerking myself around.

If you’re not honest with yourself about a person’s imminent passing, you are likely to make dumb mistakes. You may buy a vehicle your charge won’t be able to get in and out of in six months. You may put your charge in a home with too many steps and so on. You may fail to get his estate arranged. You may end up handling funeral arrangements in a rush.

I may have made some bad calls already. I made my dad get a new (nearly) SUV last year, and it’s much better than a car, because he doesn’t have to squat to get in. A van might have been smarter, though, because an SUV won’t work well with a wheelchair or cart. I don’t know if he’ll be able to get out of the SUV in three months. What do I do then? Maybe I’ll look for a minivan with 150,000 miles on the odometer.

I may have chosen a bad dentist. Last time he saw her, she gave him a tooth-coating treatment that cost three figures. Naturally, they asked him, not me, for permission. I found out when I paid the huge bill. Hello? All he needs is to hold his dental structure together. He doesn’t need bleaching, veneers, new implants, fancy crowns, or a custom grill with diamonds in it.

I’m going to try another dentist.

You have to be careful around medical people. They will recommend expensive treatments a dementia patient can’t benefit from. A friend of mine is in the hospice business, and he told me about a shocking case where a doctor tried to give a pricey elective treatment to a dementia patient who was over 90.

Doctors and dentists love money; don’t let anyone tell you different. There are people who make a living teaching doctors and dentists how to find ways to charge more. Look it up if you don’t believe me.

My dentist back in Miami tried to charge me a separate fee to search my mouth for cancers. That was clearly a new “revenue enhancing” gimmick. I declined. The startling thing is that he was trying to get paid extra for doing something he was already ethically obligated to do. If a dentist sees a big discoloration in a patient’s mouth, he has an obligation to say something. I hope my old dentist isn’t ignoring lesions because people aren’t paying extra to be informed.

I want doctors to avoid giving my dad unnecessary treatments. One of his doctors said something about a surgery he didn’t need, and I turned it down. I can’t recall what the procedure was. The doctor didn’t think about what it would be like, trying to get a dementia patient to cooperate after a procedure. It would be very hard for me, and it would also be hard for nurses in a hospital. He has already proven he is capable of defying them and cursing them out.

I don’t need to spend two weeks trying to prevent my dad from pulling out the stitches on a new tummy tuck. That’s not going to do either of us any good.

Here’s what a dementia patient needs: tasty food, cleanliness, peace, human interaction, and prayer. It’s too late to worry about optimal nutrition, regular workouts, cosmetic dentistry, vacations, and tailored clothes. The primary goal is to make things go smoothly, and anything that interferes with that is toxic. Dementia patients need routine, and a row of fresh stitches is not routine.

I have the impression that he won’t be here much longer. He doesn’t eat as much as he used to. He was always a ravenous eater; now he merely overeats. In spite of overeating, he is slowly losing weight. He is losing strength in his legs; standing up keeps getting harder. I have the sense that his body is letting go of life.

I wish he had accepted Jesus a long time ago instead of last month. It has changed our relationship for the better, but we have a short time to profit from it, at least here on earth. I wonder what things would have been like if he had gotten off his high horse in 1990 or 1960.

My mother married an atheist, and you see what happened. If you’re married to an unbeliever, look and see what your future and the future of your children may be like. It will be your fault. Sorry to tell you that. Don’t run to God and ask him why bad things happen to a good person like you.

You can say it was all worth it because my dad finally came around. No; it wasn’t worth it. None of it was necessary, and God had something much better in mind.

Imagine what might have happened had my mother obeyed God and married a man of prayer. He would have treated her better. She might have been spared two miscarriages. She might have had better children, and they might have had better lives.

She might be alive today. God helps people quit smoking, and he also heals cancer.

She probably wouldn’t have had a child who was a sociopath, a narcissist, a defiant and hopeless addict, a pariah, and a felon. I doubt she would have had a son who had as many problems as I have had and who took as long to grow up.

I’m not sure my sister and I were ever supposed to exist. I can’t say the universe is better off because we do. The children my mother should have had would surely have been better.

In The Tragedy of King Lear, Gloucester said his bastard son Edmund “came something saucily to the world before he was sent for, yet was his mother fair, there was good sport at his making, and the whoreson must be acknowledg’d.” Then Edmund went on to cause a lot of suffering. As a person who was conceived out of bounds, I have to say I feel a sense of fellowship.

My mother made a foolish mistake, and it paid off in destruction and suffering that continued long after she died. I am still working through it today. That’s how it is. If you made the same mistake she did, you need to get to work right now and get whatever help is available.

I better make that list. Best to get ahead of these things.