January 28, 2012

I'm Glad I am Not God

Published on Open Salon, January 25, 2012

My father has been having a bad week. Since my mother fell out of bed on Saturday morning, she has declined steadily.

Dad called the ambulance right away and they rushed her to the Emergency Room of the closest hospital, where they completed a battery of tests. Nothing broken, they said, and sent her home.

Of course, she cannot tell my Dad if she has pain. Her awareness, like Elvis, has long since left the building.

She isn't eating or drinking much, and she can't go more than ten feet until she is tired. They have a doctor's appointment for her in a few days. You know how physician's offices are; appointments are made on the triage system and doctor availability. Mom stands in a long line of geriatric women with dementia who are declining. The ER sent her home, there's not much else to do but wait.

Dad is frantic and tired and I don't always get the full story. I'm not really able to make the 500-mile-round trip this week.

Dad went to Walgreens this morning to pick up four prescriptions. He didn't notice until he came home, less than half a block, that they only gave him three. He called the Walgreens number and got someone at a call center. Three layers later, he got to talk to someone in the store, who figured out what was going on. He was very upset and frustrated by this, and out of breath from being angry. He is my mom's primary caregiver, and at 81, he has a six stents in his heart and has survived a heart attack.

My mother hasn't had a bowel movement for four days, and won't drink much of anything. I suggested -- from 250 miles away -- that he give her prune juice with a shot or two of 7-Up. Four or five months ago I gave him a recipe for "Power Pudding" that will do the trick, but he won't make it. Rather, he gives her two stool softeners, and the result of that is not pretty nor welcome by anyone. I've tried to convince him that she needs to have some prune juice or power pudding every day, but he doesn't want to hear me.

He also told me this morning that she had not had a shower in a week, because she was too unstable on her feet. Then he said he had gotten a shower chair. I felt awful, didn't I work in health care for thirty years? Shouldn't I have figured this out? But he didn't tell me, and things have obviously deteriorated from when I was there three weeks ago.

Dementia is like this, and I feel like I can write about it from somewhat of a "bully pulpit." My mother has had it for ten years, and three of my four grandparents had it.

My parents live in a retirement home, in the independent living area. Moving there was a wonderful idea, and they live about two miles from my brother who is very helpful with them. But they missed the window of opportunity for assisted living. She no longer qualifies, and I'm waiting for the day when they want to throw them out of "independent" because I think the only reason she is able to still be there is because he takes care of her.

She qualifies for home health care, but Dad doesn't want other people in his house. This makes me so sad because it would be such a relief to him. A nurse or social worker would come to the apartment and do a full assessment of her needs. Things like the shower chair, or a walker, or things I cannot even imagine would be offered.

Dad finally got a wheelchair through Medicare but he doesn't like to use it. I understand his point that it is good for her to walk, but I think we are passing the Rubicon here and I know it is so hard for him to deal with. This is the love of his life; they will have been married 57 years this summer.

She has a Parkinson's like gait (we've had her tested, she doesn't have it) but obviously has many neurological problems related to the dementia. She is unable to get out of a chair by herself; I wanted Dad to get a lift chair and he would have no part of it. I do know how to get an older or disabled person out of a chair--the old linking elbows trick--but he would have none of it and pulls her right up. It is uncomfortable for her, and I cannot imagine it does him any good either, but he persists. And he is her 24/7 caregiver.

I go to visit every three or four weeks and that gives Dad time out of the apartment. He also has a sitter who is terrific and provides wonderful care, but he is reticent to use her when Mom is "backed up."

We are coming to the point of no return, and I really don't know what to think. Should he get assistance in the apartment, or should he move her to the skilled unit in the same building? Money is not the main issue here, they have LTC insurance (which would have paid for some of the assisted living had they done it soon enough.) Maintaining the apartment and a skilled room will use up all their resources, which is fine, that's what they are for but its still a worry. They can cover it for four or five years, and then what?

I can't worry about the "then what" today because I have to worry about today.