I’ve Seen Living, and This isn’t It

Today has not been the jolliest of days.

I toured two assisted living facilities earlier. This is my first foray into the world of parent storage. It’s hard to think of it as anything other than storage. Once you move to one of these places, you cease to accomplish anything of worth on the planet. You sit in God’s waiting room, killing time until his receptionist calls your name.

This was my first visit to this kind of business since maybe 1990, when my dad and I visited his mother. I don’t call her my grandmother because she had no interest in my sister or me. Her facility was a small hospital. They didn’t try to make it look like anything else. My grandmother lived in a hospital room, not an apartment. Some patients there were mentally okay, and some just made grunting sounds and wandered around. The air smelled like urine, feces, and ineffective cleaning chemicals that failed to mask odors.

I’ve written about this place before. While we were there, my dad whispered that if he ever ended up in such a place, I should kill him.

The people were very nice at both places I visited today. This is northern Florida, so one would expect them to be nice. I have no doubt that my dad would be treated with kindness, consideration, and patience at either one.

The first place was relatively upscale. They had private rooms which were really suites. They showed me one. My dad would have a small living room, a kitchen area, and a separate bedroom. He could have his own refrigerator. The living room would have a TV, and he could have another one installed in his bedroom.

The halls in this place are maybe a hundred feet long. At mealtimes, the residents make their way to a dining room which is probably 60 feet square. Attendants sit along one wall, like ball boys at a tennis match, waiting to jump out and help anyone who falls over or chokes.

There were a lot of women at the tables. Men do themselves a favor by dying younger than women. It seemed to me that most of the people were a little more frail than my dad, but maybe I’m just used to thinking of him as strong and vital.

While we were walking around, a man left the dining room with a walker. He moved very slowly. He was wearing funny socks with little rubber things knitted into them for grip. No shoes. An attendant carrying a walker chased him down. She had another walker in her hand. His. He had taken someone else’s.

They had a room with chairs and a DVD player. They also had an activity room with a piano, lots of books, and plenty of games.

They didn’t have much in the way of outdoor facilities. They allow residents to walk beside the road in front of the place. Not sure how good an idea that is.

The lighting was a little gloomy, and the paint was somewhat yellowish. The air wasn’t all that fresh, but the aromas of things like diapers and disinfectants were muted.

If you store your dad at a place like this, you can visit whenever you want. You can check him out and take him to lunch. You can bring him home on weekends. You can use it as a firewall to keep your dad away from you while you try to get things done, but you don’t have to leave him there all the time.

I suppose the danger is that you’ll check him out so often, the home will fail to serve its purpose. I started thinking about how I could take him out for lunch and bring him home for visits, and then I realized I wouldn’t benefit much from moving him in if I overdid those things.

The second place was less expensive. The rooms were just rooms. No suites. They opened onto little living room areas with kitchens. There were no stoves or conventional ovens, for obvious reasons, but they had microwave ovens and refrigerators.

They had a little courtyard where people could garden or sit in the sun. They had some barbecue grills. One still had stickers on it, but another had been used. They didn’t have any place for people to walk. My dad takes long walks every day. He would have to walk in circles in the courtyard.

The second place had two levels, a la Dante. One was for people who weren’t too far gone mentally. The other was for people who were completely out of it. The lady who gave me the tour said my dad would be given an assessment to determine where he belonged. He is clearly in better shape than the residents of the second place, but six months from now, he may fit right in, or he may be so far gone he’ll be in a hospice.

The second place had two smell levels to go along with the care levels. The area for people who could dress and feed themselves only smelled a little bit. The other area smelled like what it was. The more feeble people get, the dirtier they are, even when attendants are scurrying around behind them wiping things up.

I “met” three ladies who live in the memory care area. One seemed very happy. She was smiling and engaging the attendants, enjoying the attention. She was in a wheelchair. She was wearing black pants that had white discolorations in the crotch area. I knew what that was. Prolonged contact with urine bleaches fabrics.

I’m not accusing anyone of failing to look after this lady. For all I know, fabrics get bleached like that after attendants remove them promptly and put them in hampers.

There was another woman who seemed very young to be there. I would guess she was around 65. She looked like she must have been beautiful in her youth. Her jaw was set, and she sat staring at the TV with a grim expression. Her hair was mostly white, with some brown areas. Most women that age dye their hair, so it was a little strange to see one whose vanity was being ignored. It was a quiet admission of surrender. Her hair color wasn’t important any more.

I asked the lady giving me the tour things about getting my dad installed there. I wanted to know how long it took and so on. I told her he was determined never to be put in a home. She started telling me how people adjust. Some of them ream their kids out every time they visit, calling them traitors and so on. Then when the kids go, they forget all about it, literally, and go back to palling around with their new friends.

It made me think of my first day of school. No kid wants to start school, but once you’re there, you don’t mind it. If you’re lucky. My first “school” was more like a pre-K day camp, so I enjoyed it.

I feel like I’m considering sending a kid to camp. At first, you look forward to having some time to yourself, but then you think about the days when you’ll be alone at home, wondering what he’s up to.

My dad is making some effort to avoid causing me problems, but he still does a lot of things to make moving him to assisted living easier to face. He does unbelievably filthy things in the bathroom and kitchen. Sometimes he is abusive. He offends my friends, not with his disability, but with insulting or gross remarks.

I am somewhat grateful for his bad behavior. It must be very, very hard to put a considerate, cooperative parent in a facility. It will be harder than I expected when my dad’s time comes, regardless of how difficult he makes life here at home.

I don’t think he’ll be happy in a home. Not while he still has some of his marbles. He’s very smart, apart from the dementia. He will understand exactly what’s happening. He will know what it means. He will feel the sting of the loss of status and power. It will be harder to maintain the shield of denial.

I’m wondering about home care. I was advised to get him evaluated for home hospice care. Today I learned that Korean War veterans are eligible for $1800 per month in assistance. That would pay for a lot of personal attention. Maybe it would be better to have someone come here for a few hours a day to look after him. It’s hard to say. In a home, he would have people his own age to socialize with, and they would have activities, but it would still be a home. Here, he would be able to stay in his house and be around me, but he could forget about karaoke and all that other nonsense.

There is no good answer. I need to stop looking for one and settle on the best bad outcome. He’s going to suffer. He’ll suffer the indignity of regimented life in a thinly disguised asylum, or he’ll suffer boredom and increased isolation here.

When my mother got cancer, no one expected or looked for a perfect solution that would avoid all pain and grief. We just looked for the best deal we could get, which turned out to be 8 months of unpleasant, expensive, utterly pointless treatment followed by death.

Dementia is like cancer. When you get it, you will suffer, no matter what anyone does to help you. The suffering probably varies in direct proportion to the size of your ego.

When you become demented, the best thing anyone can do for you, apart from helping you receive salvation, is to give you up to laziness and the diet and activities of your choice. Trying to fix you is cruel. It prolongs a bad experience for no constructive purpose. My dad’s doctors should take him off his blood pressure, cholesterol, and blood clot medications. I should let him drink 5 shots of hard liquor a night, the way he used to before I got his doctor to stop him.

His new cardiologist is talking about the possibility of more “aggressive” treatment. Cynical me, I see that as an effort to milk more money out of Medicare. My dad is like a toothpaste tube full of tax and insurance money, and medical professionals want to squeeze every drop out before giving up on the tube.

He doesn’t know his address or phone number, and he wears a diaper. He can’t get better. He will continue getting worse, and then he will die. If treatment accomplishes anything at all, which is not likely, it will only be the prolongation of his struggle and humiliation. It may keep his heart beating longer, but his dementia won’t even be slowed down. It is 100% incurable and impossible to retard.

When we go to the grocery store, my dad stops in the bakery and ice cream areas. I let him buy what he wants. If he forgets to get ice cream and baked goods, I remind him, because he bugs me about it if we run out. He probably eats a gallon and a half of ice cream every week, and he likes pies and cookies. That’s fine. It’s not making anything worse. The problem is the ice cream he ate when he was in his fifties and sixties. That’s the ice cream that made him demented, and he can’t uneat it now.

If I tried to stop him, I would have to hear about it every day. When he starts demanding ice cream, I take him to get it.

He reminds me of my aunt. One day her neck started to itch, and she went to her primary care physician. She had a skin rash, and it turned out to be caused by small cell lung cancer. After she was diagnosed, she continued to smoke. It didn’t make things any worse. She was killed by the half-million cigarettes she smoked before she got sick.

My grandfather had a heart attack at the age of 85. He was strong and healthy at the time. He was still practicing law and enjoying life. He got angry at a hired man who disobeyed him, and he got out of his car and chased some cattle on foot. Later on, he had chest pains, and they took him to the hospital in Lexington. A few days later, he was dead. He was lucky, and so was my grandmother, who would have had to look after him. Look what they missed. Even my mother was lucky, compared to my dad. And what if she had been cured of cancer? She would be 83 now, struggling with the job I’m trying to do.

Tomorrow I visit another home, and then I’m done with that for the week. I’ll be looking into hiring an attendant, and I’ll eventually ask his doctor about home hospice care. Tonight I may tell my dad where I went today. I’m not sure. He has to know sooner or later.

I don’t know what can be done when a patient refuses to move into a facility. Do they Baker Act them and hogtie them? The people I talked to today didn’t seem ready for angry patients who are determined to escape.

The sooner we start talking about it, the sooner he will accept it. I think.

I strongly advise people to take care of their brains. Lay off the booze, don’t smoke, and avoid obesity. If you start to slip, draw up legal documents indicating you don’t want your shell to be propped up forever with blood thinners and beta blockers. Otherwise, get ready to see your family suffer needlessly and your estate drained. Even with Medicare, you may shell out $75,000 per year. How long can you keep that up?

This stuff is real. We hide it behind hedges and fences and drawn blinds, but it’s coming for us. Might as do what you can to prepare. It’s better than letting your selfishness cause your family to be blindsided.