By Janette Barber

My father just downgraded from horrible to nearly unbearable. He’s demented. He was living in a dementia unit of a privately run assisted living facility but got an infection that led to dehydration that caused a hospital stay from which he hasn’t really recovered -which means that now he’s in a nursing home.

The place where he was living before the hospital stay was wonderful to the extent that a dementia wing in an assisted living facility possibly could be. It didn’t look like a hospital. He had his own room. It was pretty, with three different big sitting rooms with TVs. It wasn’t crowded - only 28 residents as they call them. About two months before this hospital stay, they told my sister (who is beyond being a saint and my father’s caretaker and advocate) that he had reached their 4^th and final level of care. That meant the next time he “stepped down” he’d have to go.

That’s what they call it when you go like this. Step downs. Things go along for a while and then something happens and everything gets worse and then okay for a bit and then worse again over and over until the end. Something like a urinary tract infection in an old demented person is absolutely devastating. So this hospital stay resulted in a step down for my father. (Actually it would have caused a step down in a healthy 25 year old. It was a crash course in everything that is wrong with the medical system. I’ve instructed my boyfriend to kill me rather than put me in a hospital. It’s just quicker.) The last time I saw my father at his old place about two months ago, he was having a significantly difficult time remembering how to sit. Now all he does is sit in a wheel chair parked in a hallway in front of the nurse’s station. He has a magnetic alarm attached to his shirt that goes off if he tries to get up. They have to do that. He is now a fall risk. A fall means a broken hip which means pain.

Standing around in hospitals or nursing homes I’ve noticed that one often encounters other people who also have old, demented parents. Within two minutes of conversation, inevitably, one of you will start strategizing about how to not end up in the same situation. I always say, cleverly, that my goal is to kill myself before I forget that I want to.

The other reality you have to confront when you go to nursing home is the cost. It’s astounding. This is a very large facility that costs between $10,000 and $11,000 per month. There are 50 people on his floor. That’s $500,000 per month and $6,000,000 per year…just to house 50 old people. And the facility has multiple floors with lots more old people so that without question Medicaid under Title 19 is paying out - just to this location - tens of millions of dollars per year. With Boomers facing their golden years, old age is becoming a cash cow.

There is a man in the other bed in my father’s room. As far as I can tell, he hasn’t moved since my father moved in. He hasn’t even closed his mouth. I don’t know why we have to let it go that far. The way I see it, I would never let my cat go through this. I would do everything I could for my cat as long as there was any quality of life left but at some point when no recovery is possible, I would take my cat and have his suffering ended. I wish I could do that for my father. But of course I can’t unless I want Kevorkian’s old cell.

On the other hand, maybe I’m glad I don’t have to make that decision. Who knows what life is really like for demented people? Is dying really what he would want or is it what I want for him? Or is it actually what I want for me? To have his incredibly slow and painful march brought to a painless end. Who am I to say that should happen for him? My father was always terrified to die. Now he will never have to face it. Maybe I should just trust that whatever happens is what is supposed to happen. (The really sad thing is that now I’m waffling on whether I could even do it for the cat. How do I know when the “when” is right?)

I do suspect I’m having a little trouble dealing with the horror. For example, the day before Thanksgiving I took the train to my sister’s. We went to visit my father. He had no idea who I was. Mostly he slept with his mouth open. We tried giving him a ride in his wheel chair but we couldn’t find the foot things. Then we left and went shopping to get our minds off it. I bought a white linen tunic, a black linen tunic, Flax rust linen pants and Flax blue linen pants. I bought some brown hemp pants and a gorgeous black skirt. I bought an antique washboard and a holder for kitchen matches. I found a lovely brand new 50’s crocodile clutch, a Christmas garland made of sparkly fruit, four cookbooks, some linen napkins. I bought some Fisher Price Fish Maracas and a Storybook Rhyming thing for a baby I know. I bought some peppermint tea and some ginger tea, a covered ornate casserole dish and an antique curling iron. Then we went home.

We spent Thanksgiving Day with him in the bin. It took us about 40 minutes to wake him up and a lot longer than that to get him to track a finger. He didn’t know it was Thanksgiving. He didn’t know it was me except for just a flash at the very end. Then we left and went shopping. I bought five rolls of wrapping paper, 3 new bowls for my cats, a cat scratch toy and a big catnip scratcher. I bought cookie tins, baking sheets, slippers, pendaflex folios, a make up bag, three Christmas candles, a leopard print three ring binder and some polka dot paper. I also bought a frame, some slipper socks, a Christmas mug and two Snow White pens that light up.

I’m visiting again on Friday. Need me to pick up anything for you?