I read an article today and it profoundly moved me. You can read it here.
It's about one woman's end-of-life decision when she discovered she had Alzheimer's. It affected me for so many reasons, one being that I am deathly (haha!) afraid of developing dementia of one sort or another (as did my grandmother and my mother) and find myself thinking that I'm probably already on that road so very often. And really- there is nothing that can be done about it, medically, if one is and it's not like getting a diagnosis of a serious disease where there are treatment possibilities which one can consider along with the odds of success for each treatment and making informed decisions based on those along with the consideration of what one considers to be "quality of life" and so forth.
Alzheimer's is a slow, sure death sentence which robs one not only of the ability to make decisions and function but which eventually results in the very essence of a person disappearing.
Horrifying for the individual and to the family and even in states or countries where one can choose assisted suicide, one must have a sound mind in order to legally obtain such help and by definition, a person with Alzheimer's or another form of dementia does not have that sound mind and so, no matter what the person would have desired as final wishes before the disease took hold, there is really not much legal recourse as to ending a life and of course, by then the person is not able or capable of ending it herself.
And this is the core of what the article was about. One woman's journey to control her own destiny. To NOT become a person whose personality, whose individuality, whose ability to do the simplest tasks for herself has been taken from her by the cruelty of the disease without some say-so in how it ended.
I think of my friend Lynn who at a startlingly young age developed very troubling symptoms, both mental and physical. Some were like Parkinson's, some were like Alzheimer's. After years of appointments with doctors and neurologists, she was diagnosed with corticobasal ganglionic degeneration. She lost words, the ability to make the bed, to write, to cook, to use her debit card, to drive, to reason, to function. Slowly, over years. And with each loss, she was bewildered.
I remember when a friend brought her a Christmas tree and she got all of her boxes of lights and beloved ornaments out and realized she had no idea what to do with them.
The most horrible, perhaps, was when she looked at me one day and said, "When did I forget how to do this?" Meaning, go to the bathroom.
She couldn't dress herself, she couldn't feed herself, at the end she was NOT herself. It was as if the very essence of who Lynn was had been erased.
By then she lived in a nursing home and although the people there were caring, it was simply horrendous to visit her there, to walk down the hall and see her slumped in a wheel chair, her eyes partly closed, her hands useless, unable to verbalize, unable to even enjoy the simplest things which she had always taken such joy in- music, the wind blowing through trees to kiss her body, her family, her son, her friends, food, touch. There was nothing there of Lynn and if there was, there was no way she could express it. She could not turn on a light, much less a CD. She could not pick up a book of photographs to look at, would not even understand what they were if she could have. She could not tell us if she was in pain and indeed, got several UTI's which only became apparent when her temperature rose and then began falling and would suffer her bruises and contusions in silence, as if they were not even part of her at all.
And at some point, the family called in hospice and here's the bizarre part- the nursing home staff did NOT want hospice to come in. They thought that Lynn was not ready to die. That she could still walk, if aided. That occasionally, she did enjoy ice dream. That they could prevent further falls.
I was at the meeting which had been arranged with the staff and her family and a hospice representative. And I remember finally saying, "Look. I have known this woman for thirty years and she was the most alive person I have ever known and she would NOT want to live like this. She is ready to die and we, who love her, need to let her."
Finally, she did. Some of you who have been reading her a very long time remember this. The peace that finally came.
And I think of that and I wonder, if Lynn had been given the true facts about the progression of her horrible illness from the moment of diagnosis, what she would have wanted to do. Could she even have understood it at that time?
I do not know. I do know for sure and certain that if she had known that she would not be able to ever dance again she would have chosen a quicker exit.
Here's another thing I was thinking about today- how as we age, the fact of death becomes more and more certain. Which, yes. Of course. But the older we get, the more the odds rise for almost every disease process known to humankind. Sure, there are a few diseases which are more apt to strike young people than old, but they are rare. And so of course society tells us to "live while we can!" To "make the most of each and every day!" To be grateful for that health which we do have. To "use it or lose it!" That sixty is the new forty. That if we eat blueberries and kale or whatever the miracle-food-of-the-week is we can stave off these processes of aging, these diseases. If we stay active, if we stay engaged, if we do the crossword and take up new projects and learn new things and, and, and...
Death is the end of it for all of us, no matter what and I am cool with that. I have no desire to live forever and I have no doubt that the world will continue on without me being here in my present state of consciousness.
But as my mother always said, "Death is not the worst thing." And it is not. Death can be the release, the relief, the blessed opening of the door from pain and suffering into peace.
It is the messiness of the before-times that scares me.
I look around me at the age of sixty-almost-sixty-one and I see such a beautiful life. But I also see a life which I love because I am still able to be physically strong enough to move my body through it, to be able to make rational decisions. To take care of my grandchildren, to garden, to shop for what we need, to perhaps travel to my beloved Cozumel again. To be able to keep account of my chickens, to know how to cook a meal so that everything comes out at the same time. To be able to drive, to find my way there and back. To read a book, a magazine. To joke, to dance. To show my love how much I love him.
Who would I be, WHAT would I be if I could not do those things?
I would not be me.
And I would not want to be here anymore.
Mr. Moon and I used to joke that our "retirement plan" was to become junkies at the age of...oh well, I don't remember what we so glibly said when we were still young and full of life juice. Was it sixty? Become junkies and then, when we had used up all the money we cared to use or when we'd become nothing but a burden, to overdose together.
It was a joke and yet, sometimes I wonder- is that any less of a sensible plan than buying insurance which will pay for assisted living and then a nursing home?
I have no idea. And I am not there yet.
But today has been a day of thinking about it all. Thinking about Lynn and also my friend Brian who died not that long ago. He was in bands, playing several nights a week, holding down a "real" job, biking, laughing, loving and beloved. And one morning he got up, got dressed for work, drove there and collapsed on his way in from the parking lot.
Dead. Heart attack.
He was a lucky one in some ways.
I am sorry to be so somber. To be a "downer" as we used to say.
But look- these are thoughts that I have.
I may have thirty more years of decent life or I may have five. I don't know and no one else does either.
I have no happy words to end this with. This is reality. This is what people think as they age, at least if they are people like me.
I'll check in tomorrow which will mark eight years of this blog. Hopefully, I'll be in a better frame of mind, more preoccupied with thoughts of beans and okra coming up and less of death and disease.
We shall see.