It’s hard to watch someone die

Feb 15 2016 Published by under Alzheimer's disease, dementia

My mother is dying. She is dying, surely as the Chicago Cubs will fail to win the World Series, again (apologies to JKR). But she is dying very slowly. At times this is less painful. I can forget she is dying when she seems to be the same week after week. She turned 90 already this year, the first baby born in Passaic, NJ 90 years ago.

But sometimes her dying is much more real and now and present for me. This week, the hospice people called to tell me that she had an “incident”. This, by the way, is her second go round with hospice. She was “on hospice” as they say, about five years ago, but got kicked off because she wasn’t dying fast enough. No one believes she is not going to die, not me, not my sister or brother, or any of her aging friends. But she is taking her time about it.

When they called me, in the middle of the day about the “incident”, I said “do I need to come right now?”. Coming right away is a 20-30 min drive. When I moved to almost-MRU in the heartland of this country, I moved my mother with me, away from the city where she had lived for for over 50 years. No one else cared. My father was gone, and my brother and sister too busy with their lives to think that making sure she was in the same place as one of us was something important.  No, said the nurse, she is doing OK. She perked up and ate something and drank something and we have her on oxygen and that seems to help.

What, I said, is hospice’s view on using oxygen? My sister and I had already agreed on no trips to the hospital, no IV lines, not only nothing heroic, pretty much nothing except that which makes her comfortable, and as happy as she can be. Hospice, the nurse said, thinks oxygen is a family decision. Oh crap, I thought. I do not want to be making decisions. But, the nurse said, oxygen doesn’t extend anyone’s life, it will just keep her comfortable. Until, of course, I thought, she pulls the cannula off her face.

One of our favorite (mine, my sister’s, my father’s, who was alive at the time) stories about my mother and her dementia was a time she was in patient at the Very World Famous MRU hospital, where both of us taught. She was in to get her meds adjusted, as she had bit a nurse in the facility where she was living. I am sure the nurse did something. People with dementia lose executive function, that psychologic construct that keeps us from telling our department chairs that they are a jerkoff asshole to their face. My mother wasn't inherently mean or nasty, but she knew what she did and did not want. She just didn't have a good way of expressing it, and lacked the executive function to understand what would be an acceptable way of expressing it. During this hospital stay, a young phlebotomist tried to take blood from my Mom, without much success. As I watched him try for the fourth time, my Mom grabbed the needle and tried to stab him and said “see how you like this shit”. For the record, when intact, my mother never cursed and objected strongly to my, er, colorful language. “Potnia, darling, academics just don’t talk that way”. It wasn’t about how women talk, but about how scholars talk.

Back to last week. When I did get to my Mom, about an hour later, she was fine. I notice the oxygen tank had run out, but she was alert and chattering in her dementia-talk, and had two bowls of ice cream. Since then I've seen her twice, and she is doing as well as anyone who no longer has either language or speech, but some voice. My sister says she’s got at least 9 lives, I think it’s a near- infinite supply. I go on watching, and waiting. She goes on eating ice cream. And we both know that Alzheimer's is an ugly ugly disease.

8 responses so far

  • odyssey says:

    My thoughts are with you.

  • Anne says:

    I am so sorry. Yes, an ugly, ugly disease. My thoughts are with you too.

  • Former Technician says:

    While the quick, unexpected death is often mourned, it is much easier than to watch someone slowly fade away. One of my grandmother's went this way, aortic aneurysm. She was in England and diagnosed as to frail to survive surgical intervention. She was given morphine and quietly slipped away. This was quick but hard on those who could not get there in time.

    My other grandmother went the way I would like to go. Terminal fast acting cancer. A few months to put everything in order and see everyone who wanted to visit. Then in the end, she went to bed, slipped into a coma, and died. This second death was much easier on the survivors and I think on her as well. She was ready and never had to fill the pain script.

    Alzheimer's and dementia are hard on both sides. The difficulty in communication adds difficulty to the patient, family and care providers. This is why many people I know have advanced directives. Unfortunately, not everyone is in agreement on what the directives mean. My mother has stated no tubes including oxygen. I know this, but it is not spelled out in the paperwork. I do not relish being in your shoes.

  • ecologist says:

    My sympathies and best wishes, for you and for your mother.

  • Comradde PhysioProffe says:

    90 years is fucken old!

  • Zuska says:

    I am so sorry for all you and your mother must endure. There are no good words for this. It hurts so much to wait and watch as someone you love dies slowly, and to have to grapple with these difficult decisions.
    For those of us who have gone, or are going through now, a similar struggle, it means so much that you are willing to talk about yours. There are no great answers, I think, but it somehow helps knowing we are not alone in having to face the terrible questions.
    Sending you hugs & wishing you all the strength you need.

  • […] was taking care of my mother, from her "incident". I didn't think there was more she could lose, but she did. I didn't think it could get harder. It […]

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