Thursday, May 21, 2015

You Can Skip This One

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.
To write.
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.

Love...Ms. Moon


  1. I too was impressed by that article, and also by the responses to it, which were markedly devoid of hysteria and were instead thoughtful and reflective. And respectful. Did you ever see the film Iris, about Iris Murdoch? If not, it's worth watching, and I won't mention the scene I found most wrenching.

  2. I, too, read the article and found it compelling and reasonable and even mind-blowing. I'm too tired to reflect on it right now, but I sure do appreciate your reflections here. I also want to throw out there that CBD is being studied for use in Alzheimer's because of its neuroprotectant properties. On the last installment of "Weed" on CNN, they featured a man with early demential whose aggression/anxiety, etc. has improved dramatically since he began using it. I think sometimes that I might start using CBD myself, prophylactically!

  3. Another reflection is how sensitive this topic of "assisted suicide" or even non-assisted suicide is for a certain segment of the differently abled population. Many people who espouse quite radical views about disability and disability rights object to what they determine is a "judgement" of what makes a life worth living. The line becomes awfully gray when we decided what makes a life "worth living." I veer more toward the side of autonomy -- that it's my right to decide when my life isn't worth living, but I understand and empathize with those who worry about institutionalizing assisted suicide -- deciding that a severely disabled person's life is somehow "less than." Tough, tough issues.

  4. A- I did not see the film. I know I should. It's hard to watch these things at my age.

    Elizabeth- I thought about you and about Sophie at every part of what I wrote. I also watched the Nat'l Geo film about CBD today. And I wondered- could CBD also be a part of the treatment for dementia and who-knows-what neurological diseases? I thought about what does it mean to have quality of life. Quite frankly, I think of you and Sophie in almost everything I consider these days. And I do not have the answers. And yes, these are incredibly tough issues. I feel very humbled to have your input on what life is all about, every day. I hope you know that.

  5. Both my parents had Alzheimer's and I worry about this a lot. It seems inevitable that I will have it and that time when one is unable to make a decision for themselves because they have just crossed that threshold of losing it is frightening. It is depressing. I would take CBD now or the second I felt myself going down or that my friends noticed a change in me. Hopefully I'd have the courage to do something to myself before it really got bad. Ugh

  6. Mary, that article really struck a nerve with me, and the quote at the end got me choked up. I agree with much of what you wrote and it's hard not to think about the dwindling years we have left and how we want to live them, or to end them if need be. Let's hope for luck, to not have to make these choices or to watch someone we love have to make them.
    I'm trying to focus on the flowers and the lovely nature things out my door, and it's easier some days than others. Thank goodness you are here to enlighten, entertain and distract me. Many thanks. xo

  7. I have been thinking about all of these things ever since my father had his paralyzing stroke almost eight years ago and had to go into a nursing home. I spend a fair bit of time there visiting him and in the process I have seen numerous residents with various problems, including Alzheimers. I have also had quite a few discussions with family and others about quality of life and right to die. I so appreciate the link to that article; it gave me more food for thought. And I appreciate your thoughts on the subject as well. You articulate in such a clear way so many of the thoughts and questions I have.

  8. As you might imagine, Mary, I think of these things all the time. I read the article a few days ago and it blew my mind. A plan like that requires some real advance planning. Too late for my mom, I think. But not too late for me.

    I have a friend who says her end of life plan is to take all her savings, stay at a very nice hotel, and when the money's gone, jump out the window.

  9. You are not a downer. It's important to talk about death and the end of life. My grandmother went into a diabetic coma and 'lived' for another few years in horrible circumstances. She was sad all the time, she could not do much - all her children believed she wanted to die and that it would have been better had she not been rescued from her coma. It would have been. She had been such an amazing person, who would not have wanted to end up like that. She would weep because her grandchildren saw her the way she was. When she finally died, it was a relief, mostly for her. It's important that these things are talked about.

  10. I went and read the article. It was great. I was redirected to this one by the same author which also touched me.

  11. I haven't read that article yet, but as you said, I think it's natural that we think more about these things as we age. On the other hand, I know some people (my father) who are obsessed with fear of death, and who were obsessed with it even when they were young and healthy. And that doesn't seem like any way to live either.

    There is no good response to the Alzheimer's question. Basically all we can do is hope we don't get it. I'm with you -- dropping dead suddenly is a blessing in so many ways.

  12. life is full of unknowns except for the end. that's the only known. you can be in good health from doing all the right things and then get hit by a car. my dad did not want to have a long lingering death and he got his wish when he died in the night of a massive stroke in his early 70s, still healthy and living life. my mom, suffering from the cumulative effects of TIAs, all she wanted to do was die or at least sleep the rest of her life away, slowly losing the ability to do things like talk. when she lost the ability to swallow and the doctor's wanted to put a feeding tube in her stomach, we declined and she passed several days later. neither exit seems like a good one to me. I hope I don't become an empty shell.

  13. Omg to have the presence of mind to control how you die would certainly be a gift, wouldn't it?!
    It infuriates me that we can humanely end the suffering of a beloved pet, but we can't do the same for each other. I watched my father in law suffer for years with what they initially diagnosed as Parkinson's but ended up being Parkinsonian Dementia. He hated his body and mind for the betrayal. It was tough to watch, it would have been so much kinder and gentler to just be able to slip him something and have him go peacefully.
    There are worse things than dying, for sure.

  14. I worked as a staff member at Cornell University for 37 years. My daughter went to high school with Emily Bem. Although I never knew Sandra, I followed her career closely over the years simply because her work and activism were often in the Cornell news and resonated with my world view. She was always in the forefront of the fight for good over evil and right over wrong. It is so fitting that her death continues that good fight.

  15. Oh Mary, how this resonates with me. One of my best friends was diagnosed with dementia about a year ago, though she hasn't been totally herself for several years, not since the car accident that I suspect is the cause. She's only 52 and was a sharp, witty fearless woman. It's heart breaking for we that love her, but a blessing that she's mostly happy and still loves to talk with everyone she meets. It's getting harder for her to express even simple thoughts and I see her looking bewildered more often, but still, she seems happy and always looks forward to our outings. I don't know what she would want or how much she understands what is happening to her. She knows she has 'issues', it's so dam hard on us, I just wish I knew how hard for her.

  16. Ms Moon, I read it too and was moved to tears. I think we are all afraid not of death but of the dying. I thought it was marvellous that she could pick her own day and go in peace in her own home. It is a wonderful article. Thanks for picking up on it.

  17. I thought it was rather funny that we did read the same article on the same day without knowing of each other... ;o))) So when I opened your blog, I knew immediately which article you were talking about!

  18. The spectre of dementia is a horrifying one indeed. There are some reports that taking coconut oil and other good fats keeps the brain healthy (while avoiding aluminum and mercury which don't)but as always, science is skeptical. Might be worth a google though.

    Your junkie plan is a convincing one, but as you say... when to enact it? The goal posts move, I'm sure.

  19. Thank you for this, Mary. You provoke us to think and to feel, always. I haven't yet the article and but am off to read it now.

  20. I just talked to my wife about what to do if I die. The main thing was to not leave me hooked up to machines (I have a living will), sell my boat, but don't sell the horse. We never know.


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