My Sunday Feeling

Today is Mother's Day. Sometime today I will go see Mother. She lives in an assisted living facility about 25 miles from here. Things are not good.

She is 83 and suffers from Parkinson's Disease. She was doing ok-ok being a relative term- up until about 9 months ago when she started exhibiting signs of dementia which can be part and parcel of this awful disease. She is pretty much refusing to walk these days, not even to go down to the dining area. She walks from her bed to the bathroom or from the bed to her chair. That's about it. Accordingly, she is completely deconditioned. She can barely get up out of the chair. That's how weak she has become.

She has very little interest in the lives of her sons or her grandchildren nowadays. It is for this reason that my brothers don't much take the little boys over to see her much anymore. They make her too nervous. This is a turn of events I did not foresee. Mother used to be obsessive-often morbidly so-about "family" and being with her family. In retrospect, and through the assistance of the therapists that have followed her through these latter years, we have come to see how this is how she rationalized her inability to go out and engage the world. Once her last kid became an adult, once everybody started getting on with their lives, the world she had constructed for herself ended. She had no "self" to fall back on. So, between the Parkinson's and the depression/anxiety, it has been pretty much downhill for the last 10 years.

We all have this hope of aging gracefully and well. We all hope to remain vigorous and sharp. We want to hike, play golf, and work in the yard. We want young people gathered at our feet, receiving the wisdom that we will be able to impart. We want to be independent. We don't want to be a burden to our loved ones. And when it comes time for us to go, we want to just slip away in our sleep safe in our own little beds.

Good luck to us all. It doesn't always work that way. For some people, old age is an absolute bitch.

Mother has reduced her world to the confines of her efficiency apartment. She doesn't have much of an interest in her friends. One lady told me that Mother keeps telling her that she is too sick to receive company. I tell them just to show up anyway. Unless she is prodded to do otherwise by the caregivers we have employed, she will take all of her meals in her room. She refuses to bathe more than 2 or 3 times a week. The most recent turn of events is that she has become combative to the staff there at the facility. She orders people out of her room when they come to check on her. The last time I was up there I saw her bite her caregiver's head off for no reason. My mother has a muley streak in her a mile long. But she's not abusive nor does she have an explosive personality. This is new. This is not good.

One of my brothers is a psychiatric nurse. He says that this is the dementia doing the driving. It even has a name: "sundowner's syndrome." He says what happens when folks get like this, eventually the brain starts telling things to start shutting down. He says that in his experience this deterioration will only get worse. That's the problem with specialized technical knowledge. It sometimes tells you those things you don't want to know.

Everyone agrees that keeping her out of skilled nursing care is the best thing for her. With the level of additional care we are using, we can keep her where she is. As expensive as it all is, it's still cheaper than a nursing home, but not by much.

One of the things you find yourself doing when you have a fiduciary responsibility for someone (or more accurately a Trust in this case) is that you find yourself crunching numbers based on potentialities you would just as soon not think about. She will be 84 next month. She is profoundly ill. Right now me and the financial wizard ( I am not being sarcastic. Ray has performed magic.) I have advising me on these matters figure she has got about another 24 months of liquid assets sufficient to pay for this extra care or a nursing home. After that we start looking at liquidating trust assets. We could start that now. But we are making plans for 2 years out and good old Ray is scheming away over in West Little Rock trying to get as much growth in the asset picture as he can during this time. Because, quite frankly, I can't imagine her living that long, given the events of the last year or so.

In other words, I am making investment decisions based on a wager about my mother's life expectancy. I tell Ray that I am uncomfortable thinking like this. He says, "Don't be. We're all gonna go. If we didn't have to think like this they wouldn't have invented actuarial tables."

Of course Ray is right. I can't get all sentimental or hinky about business matters just because there it involves things I would rather not think about. People with Parkinson's just don't usually live much longer than this. It's just the way it is.

But still. I am not just a fiduciary. I am her first born. And so, today I will buy some flowers and go to visit my mother on Mother's Day. I will sit on the couch and try to keep the conversation light and pleasant. She will not let me go there. She is a dark star and she will try to pull me in. She will tell me how bad she feels, about how she needs to go to the doctor, about how much she doesn't like it where she lives and how she is going to buy her "a little house" where she can be by herself. And so on and so forth. I will nod and mutter repeatedly"I'm sorry."

After awhile she will want to take a nap. I will give her a kiss and wish her a Happy Mother's Day. And I will head for home. Sometimes as I leave, she asks me not to go. Sometimes she tells me she is scared. And at those moments, as I am turning away from Mother, if the world would just go ahead and swallow me whole, that would pretty much be ok with me.

A shrink friend of mine once suggested a tactic to use whenever Mother is going off on one of her tangents. He said not to try to reason with her (ummm, don't worry Graham)but to just remind her that "you are doing the best you can. Because that's all we as parents expect out of our own kids, just to do the best they can. Even as unwired as your Mom is, that might resonate with her."

That pretty much could be a template for me, my brothers and many of our friends at this stage of the game. Me, I've got it easy. Some of us are caring for parents and raising kids at the same time. But all of us try to stay connected up. We compare notes, we call each other and send e-mails. We take each other's temperature. We remind each other that we are all in the same boat. We go to a lot more funerals than we used to. And boy, do we make our share of mistakes.

But we are doing the best we can. Honest to God, we are doing the best that we can.