mother daughter family dementia coping

mother daughter family dementia coping

Thursday, August 20, 2015

The last time I saw my mother my toenails were painted lavender and we sat in the afternoon sunshine on the deck of her new home, me playing guitar, and she ahold of my right big toe, puzzled, working to rub the color off my nail with her thumb. It was alright. Things here are good. She is well. The deck is warm and the porch swing is comfortable, and there are railing planters sprouting fresh vegetables. This is a good home. It is a better home.

My mother was evicted from her previous home at the end of last June. She was a bad fit there. Really, that is what it was. You could go back and count "incidences" or "situations" that didn't work for either party, but really she was just not right for that facility. There was a breaking point, and a call to my sister, and an official notice that we had to remove her. And panic on all our parts as to where she would go, how we would pay for it, and how to protect my Dad. Moving her back to the house she shared with my Dad was not an option, her needs are too great now. There were dozens and dozens of phone calls to new places, and visits that did not pan out, and scary visits to places that we were grateful we did not end up in. There were repeat visits to a facility that was run by a tanned senior woman who lived on site with her residents, and whose bedroom was decorated in gold and faux animal pelts. She had cared for people with dementia longer than I have been alive. I liked that one. But it did not work out.

We were all angry at the executive director of the previous home. "Mom always hated bitches like her anyway," my sister reminded me. Yes, that was true. Tall and skinny and blonde and smiling too much in her perfect suit. The executive director really could have done a better job, especially with the bullying and the ostracizing. She could have done a better job maintaining order. All the residents there seemed to be on their own too much. Yes, they served nice meals with cloth napkins and yes it was shiny and clean, in a Hotel California kind of way, but there wasn't very much order, and just because people have dementia doesn't mean they don't remember to be pissed off and frustrated about being sick, and take it out on each other. Just ask the woman who always took her pants off. She always had something to say. My mother was asked to leave that home. My mother, who told me when I came home from kindergarten saying that my teacher wanted me to do a better job coloring inside the lines, told me "You don't have to color inside the lines." Then she bought me the 64 box of crayons. So there.

The last time I saw the director of the new home she was wearing jean shorts and a tshirt that said "Shut The Duck Up." She is very real, and her staff are loyal and patient. They love my mother. The ratio of staff to residents is smaller and there are a lot of rules. The day Mom moved in she was told quickly, you will always sit at this place at the table for meals. You will not hit. You will not swear. And I thought - good luck with that. But it is totally working.

My mother lost 35 pounds in six months at the last home. She wouldn't sleep and she was constantly setting off the alarm as she tried to escape. She was stressed and acting out. I thought her behavior was the progression of her disease but it was her rage, exacerbated by its incarceration. At the new home she is gaining weight, and sleeping better, and is coloring again, which is huge. She even learned something, which blew my mind.

I think a lot about the other residents at the previous home. Especially the ones, like my mother, who just disappeared from there. Not because they passed away, but because like her, they did the kinds of things that people with dementia do. They hit or pushed or yelled or whatever they did that was not sit quietly and wait to die. They disappeared and went somewhere, to whatever less-than-shiny place their disease forced them to go. I think about the ones whose families we never saw visiting, and I hope those residents behave because I have seen what their options will be and where they will go when they do not have a family like ours advocating for them. I think how scary it must be to be old and make friends in a dementia facility, and have to wonder what happened to them when you don't see them anymore. My mother had one friend there named Marilyn. I think about Marilyn and wonder if she remembers that they were friends.

The view from the big picture window by the dining area at the new home is wide and expansive and shows a vast landscape of green. A huge yard with a rim of tall trees hides the river's edge. In the autumn it will be spectacular. My mother still paces constantly in her staggering gait in her new home. How she doesn't fall over more, I don't know. But this facilities' hallways are smaller and not so easy to get lost in, and she can circle back and see the view out the window, pass by the staff, and look them in the eye and tell them "I love you." "I love you too," they smile and say.