Deciding how we die

06Nov15

I was heartbroken when I heard about Robin Williams’ suicide last August. He’d overcome so much, and in the process it seemed he’d grown wise.

But I also felt betrayed. Had his unhinged joyfulness been just an act? Or had he forgotten his own lessons?

Robin Williams tribute 1 FB

My questions vanished the other day when his widow shared the terrible truth: When he died, Robin Williams was battling dementia — and he was losing. Framed in that context, his suicide seemed understandable to me. I’m not sure I would want to stick around, either, if I could look forward only to a steadily declining quality of life.

“Quality of life” is a phrase we hear often, but it’s a concept we seldom discuss when it really means “end of life.” I’ve been thinking about this lately because of my friend Sal.

Sal BW 1310858 BLOG

Three months after we moved Sal into his assisted-living apartment, he finally seemed settled and content. But then, in September, he fell and broke his hip. Sal would need surgery and a year of physical therapy (“PT”) before he could walk again.

The surgery went well, but Sal was discouraged when I went to visit him in the nursing home last month. “Don’t give up on your PT,” I chirped. “Why? What’s the point?” he snapped back. And he did have a point: Even if he could get back on his feet, he was unlikely to regain enough strength or confidence to move back into his apartment.

His cousin wrote last week to tell me Sal had decided to quit PT and stay in the nursing home. Sal’s bed was empty, though, when I went to visit last Friday. “He moved to our permanent ward,” said the nurse, guiding me down a quiet hallway.

One floor up, the elevator doors opened to a vision of hell. Dinner had just concluded and several elders skittered aimlessly in their wheelchairs, their feet slipping on the sludge of half-chewed, half-dropped food that coated the floor. A few slumped like inert sacks of grain, while several others wailed and waved their spindly arms, as if they were drowning in their chairs. “Help me! Help me! Please help me!” The cacophony was overwhelming.

I spotted Sal at the last table, willing his trembling hand toward his mouth. As I approached him the payload of macaroni and beef tumbled onto his lap, and he bit down on the empty fork. He was unshaven and his clothes were filthy.

To his left was a woman whose bare, scarred scalp suggested recent brain surgery. She alternated between animated small talk and demented, tearful delusions (“Don’t tell Daddy I have it. I don’t have it, Daddy. No, I don’t have it!”).

Sal ignored her, even when she tugged at his shirt. Then she started yanking on his left arm. I looked around for help, but saw none of the staff. “Gently, Jacqueline,” I interceded, “remember that Sal is 94.” She stared at me for a moment, expressionless, and then returned to her soft crying.

“How are you doing, Sal?” I asked, leaning in to hear him above his neighbors. I didn’t know whether he’d rant about the noise, ask about his belongings, or complain about the food. “The fact is,” he said, measuring each word, “I’ve come to the end of my life.”

I’ve felt unsettled since then, because I know he’s right. I know he’s given up, he’s stopped finding joy in things he once loved, and — like so many of the elders with whom he’s warehoused — he’s just waiting for his body to give out.

When I heard the news about Robin Williams the other day, it struck me that he and Sal represent two (extreme) sides of the same coin: What happens when we avoid the tough questions.

We’re terrified of talking about death in the States, as if silence will somehow keep it at bay. But the fact is we’ll all face it eventually. So doesn’t it make sense that — just as we discuss “quality of life” with our doctors and families — we should be able to talk about “quality of death”?



37 Responses to “Deciding how we die”

  1. Thank you for sharing your experiences ❤
    It would be nice if death was an ordinary subject to discuss and not a taboo. The superficial has a good grip on us.
    All the best,
    Hanna

    • 2 hmunro

      Your thoughtful words give me hope, Hannah! I’m glad there are others out there who also feel it’s time to break this last taboo. Thank you for taking the time to read and comment.

  2. How sad. I feel for you and for Sal.

    • 4 hmunro

      Thank you for your kind empathy, Fiona. I feel sad for Sal, too. He deserves so much better …

  3. How sad. You do so much for Sal. Everyone deserves to die with dignity. We need to think about our own death and ask “What is a good death?” “What is a dignified death?” and “What do I want at the end of my life?”

    • 6 hmunro

      You’ve touched on an even more fundamental question than the one I consider here, Tom: “What is a good death?” Thanks (as always) for the thought-fodder!

  4. Our culture has indeed preferred to leave this subject aside while we do everything possible to extend lives not worth living. I appreciate your words and sympathy for your friend Sal.

  5. Poor Sal. I remember your writing about him before. This nursing home sounds horrendous to me: is it very understaffed? In my experience the staff should and do always try to keep the residents clean and attended to. The distress which can accompany dementia is very upsetting: this poor woman should have someone talking to her, quieting her, reassuring her. And there should never be food left on the floor. God knows, end-of-life homes are frightening and depressing enough without such neglect.

    End of life should not frighten or depress us, though; at least not to such an extent. I long for a society where we can discuss it openly, and where we can be fairly confident of ageing and dying with dignity; rather than dreading what will become of us. In circumstances such as Sal’s, who wouldn’t rather give up? It is desperately sad, and I am sorry for him and for you, his loyal friend.

    Following the funeral of an elderly acquaintance last week, I was talking about it with a friend who had been unable to attend. After a minute or two she said, ‘This is a terribly morbid conversation, isn’t it. Shall we change the subject?’ This cultural avoidance of death means that we cannot share with each other our thoughts, which I think is both strangely warped and which also leads to the neglect of the dying, as we younger healthier members of society prefer to look the other way.

    So yes, I agree with you, we owe it ourselves and our loved ones to talk about quality of death. (Perhaps our own brushes with mortality make this clearer to you and me, and to others who have experienced similar.) Then perhaps we can, at the last, ‘go quietly into that good night’.

    • 10 hmunro

      Thank you so much for your thoughtful comment, DB. Your conversation with your elderly acquaintance after the funeral is a perfect example of our cultural avoidance — and I think you’re right in observing that it leads to a neglect of the dying. You’ve also left me pondering whether nursing homes are contributing to this fact because death is now something that often happens far away from us, in an institution of some kind, rather than at home.
      Speaking of institutions … in my effort to be succinct I fear I may have mischaracterized the staffing at the nursing home: It’s not that the staff were entirely absent, but rather already engaged in other tasks and not available to help with the feisty Jacqueline. I must say that overall the staff seem to be caring and devoted, and any shortfalls in the quality of care are due to the residents’ rather extreme needs, rather than to staff indifference. (Indeed, I noticed during my visit yesterday everything seemed a bit calmer and tidier, even if that poor old woman with dementia was still calling ceaselessly for help.) That said, I’ll continue to keep an eye on the situation and if things continue to look grim I’ll advocate with his cousin — who has power of attorney, and who chose this facility — to move Sal elsewhere.
      In any case, thank you for your caring comment, DB. I greatly appreciate your thoughts and perspective. xx

  6. That sounds horrible, for Sal, and for you, wishing the best for him but watching him trapped like a fly in some horrible spider’s web of half-hearted care, making his life a half-life.

    I agree with dancingbeastie – Sal’s nursing home sounds as if it isn’t properly staffed. Is there choice in the where of Sal’s care? (I don’t know how the situation works in the US) It sounds very odd to have a floor covered in mush and for Sal not to be attended in some way if he’s struggling to coordinate getting food to his mouth. It all sounds a bit too Romanian-orphanage to me.

    Yes, Sal isn’t young and he isn’t well, but I’d think that his surroundings would have an effect on his state of mind. At his time of life, when he feels he’d like to leave the party sooner rather than later, there are still moments when the sparkle of the world will catch his eye and feed his soul. All the day to day food and personal care challenges should be the responsibility of the nursing home, surely.

    How is his room? What does he see out of the window? Is there a chance of putting bird feeders on or near his window if he’s stuck in that particular home for the moment? Does he have a way to listen to music or to spoken word stuff? I’d get him a copy of Dylan Thomas’ ‘Under Milkwood’ – the version with Richard Burton as narrator. If he can listen to that, it will transport him to a place of humanity and of poetry, no matter what grim misery surrounds him just outside his door. It’s wonderfully hypnotic too.

    I’ll stop now – you’ve probably thought about all these things already. I’m writing as I’m thinking. Within the restricted life that he’s living now, there is still beauty to be found. You’ll have to mine some of it for him, and wrap it round him like a blanket, but it exists.

    All best wishes

    Elaine

    • 12 hmunro

      Thank you so much for your kind and thoughtful comment, Elaine.
      As I just replied to the dear Dancing Beastie, I fear that in my effort to be succinct I may have mischaracterized the staffing at the nursing home: It’s not that the staff were entirely absent, but rather already engaged in other tasks and not available to help with the feisty Jacqueline. I must say that overall the staff seem to be caring and devoted, and any shortfalls in the quality of care are due to the residents’ extreme needs, rather than to staff indifference. In fact, when I went to visit yesterday I found everything a bit tidier and comparatively calmer, so it’s possible that I formed my first impression of the place on a particularly upsetting night.
      Nevertheless, I assure you I will intercede if I do feel that Sal is being seriously neglected. As a friend I have no real legal authority over the situation (it’s his cousin who has power of attorney) — nor can I afford the $7,000+ a month it would take to move him to a private facility. But, I’ll continue to keep an eye on the situation and if things continue to look grim I’ll advocate with his cousin to move Sal elsewhere.
      In the meantime, I’m already trying some of the “enrichment” activities you suggest. Sal is blind in one eye and quite hazy in the other, so the view out the window isn’t so important to him. He also has an attention span of about two minutes, so the audiobooks I’ve brought him have gone unheard. But he does seem to perk up when I bring in my laptop so he can lean into the screen and see some of my travel photos. He also got a huge kick out of speaking to me in French yesterday, so I think that will be a regular feature of our visits. I’ll still take you up on your Dylan Thomas recommendation, though. It sounds wonderful.
      In any case, thank you for reminding me to focus on the ways I can still bring beauty into Sal’s life.
      My very best,
      H

      • Really glad that your first impression wasn’t the standard model for the home. Difficult moments must happen and I can imagine that things can appear out of control in a very short period of time if lots of the residents need high levels of care. It did sound grim, but, if staffing levels are generally good and if the staff themselves are well supported, then that sounds better. ‘Caring and devoted’ are the golden touchstones, aren’t they?

        If Sal’s French is safely stored in a pleasurable part of his memory, would he enjoy Georges Brassens songs? The anarchy of them and the idea of the small ridiculous details of everyday life might please him. And the fact that Brassens’ own life spanned a large part of Sal’s younger life might suit him.

        Is he able to have a digital/internet radio in his room? If Radio France’s FIP Radio (http://www.fipradio.fr) is available to him, he might just enjoy having it on in the background, without him having to fuss about turning it on or off. There’s more about it here: http://bit.ly/1Q2Y5TZ Some of the music is British or American but the presenters are all French. (Forgive me if all this is obvious presumptuousness on my part. As usual, I’m writing while thinking!)

      • A quick addition – just realised that I hadn’t said anything in response to your bigger question – about death and how difficult it is when it drags its feet before arriving. It’s something that’s being discussed in the UK too as people realise that being patched up, at any medical price, isn’t always the best thing. Just because we can doesn’t mean that we always should.

        There’s a wonderful book by Atul Gawande called ‘Being Mortal’ here: http://atulgawande.com/book/being-mortal/ It’s about rethinking the medical model of keeping people alive at any cost. He gave the BBC Reith lectures last year (this one on death: http://www.bbc.co.uk/programmes/b04tjdlj).

        If you’re taking your laptop with you and think it’s appropriate, Leo Ferré’s songs ‘Avec le temps’ and ‘Ne chantez pas la mort’ might provide a ‘safely distanced by being in philosophical French’ opening for a conversation, if you feel it’s something that Sal would like to talk about. They’re here: https://www.youtube.com/watch?v=ZH7dG0qyzyg and https://www.youtube.com/watch?v=ebeibrd0J58

        I can imagine it may feel liberating to him to know that it’s an open subject. Without meeting him, I’ve no idea if the songs are too powerful for his state of mind. As one of the commenters puts it, the ‘Ne chantez pas la mort’ Caussimon poem and Ferré’s interpretation of it are: ‘aussi lucide que terrible’.

        Brassen’s cheerier videos here: http://bit.ly/1qLmS5J, and here: http://bit.ly/1HBnLSt

        • 15 hmunro

          My goodness … Sal’s situation really seems to have struck a chord for you. Thank you for all of your suggestions, Elaine.

  7. I totally agree with you. The unwillingness to look at death, and in fact to go to extremes to avoid it, means that the end of life can be very messy. I feel for Sal and for you experiencing your friend in an environment that certainly isn’t what any of us wish for. It seems so strange to me that if you speak to most people, they would never want to be in a nursing home. Yet so many end up there. Why do we continue with a system that no one wants, but many are forced into because our communities, families and systems generally are not set up to cope with the end of life?

    Thank you for speaking up on behalf of death. We must continue to ask these important questions. If our cultures (most Western ones) could only turn and face death, as a certainty, as a rite of passage, as an inevitable and welcome conclusion to life as we know it, I feel sure that the support systems would improve. Imagine if we all faced the fact of death and demanded that governments provide support for families so that they could care for their elderly in ways that are dignified and honour the life of the person who is approaching death. It’s all possible I’m sure.

    • 17 hmunro

      “Why do we continue with a system that no one wants, but many are forced into because our communities, families and systems generally are not set up to cope with the end of life?” What a beautiful and insightful comment, Pollyanna. Thank you … and I echo your hopes.

  8. You are right. We need to discuss this more. Good post! x

  9. 20 Grahame Hall

    A poignant and heartbreaking post, H. But a beautiful portrait of Sal, who is surely blessed in having you as a friend.

  10. Very touching and sad. For Sal (what a great old name!), for you…for me.

    I have a former girlfriend who’s in Colorado who works with the elderly and dementia patients for whom the institution is the penultimate step before the funeral home. She does a great job…but it is tough when the mind goes and the body rebels.

    We need better solutions for sure. We avoid death-talks like the plague (yes, that was intentional 🙂 There does need to be a societal-wide discussion that goes beyond just the “preserve all life at any cost” mentality and the bogeyman of “killing boards for the old”. My father was on a feeding tube for 9 months before he eventually had to enter hospice care. He was lucky, he died within 4 days, having given up. My mother is 92 and still independent…but if she ever has to leave the house, it will kill her. And I wonder about me. No family. I’d much rather have the option of controlled death than a long, interminable decline. I”d rather be able to sit in a chair on a beautiful mountain top and expire on my own.

    Yes, we need discussion on the tough topic. It needs to be enlightened and open, realizing that there will be a variety of answers. One size fits all won’t work here, but lets not go with the death of a 1000 cuts either.

    Of course, getting a rational discussion on something like this is about on par with me being named King of England. Or dating Jewell

    • 23 hmunro

      So nice to hear from you, Mr. Jewell. Or shall I call you “His Majesty,” instead? 🙂 All joking aside, your response gives me *enormous* hope that both individuals and societies will be able to have a rational discussion about this someday. Maybe not in our lifetime — but hopefully within the next generation or two.
      In the meantime, we’ll just have to do our best to advocate for our loved ones … and for ourselves, won’t we?
      As you so wisely point out, this is the opposite of “one size fits all” — but let’s not go with the death of 1,000 cuts either. I love that. Thank you.

  11. 24 pmmiller1

    Heartbreaking, and I agree with your readers who wonder if the nursing home is staffed well enough, given the mess and near-neglect you describe. I do with our society valued caring for helpless people more, both economically and culturally. As for Sal … I am so glad for him that he has one wonderful buoying visitor to whom he can speak honestly in the difficult twilight of his life — you.

    • 25 hmunro

      I’m actually warming to that place with each visit, dear pal. The mess is almost inevitable, given the residents’ compromised motor skills — but the staff really do seem caring and helpful. And anyway, Sal seems fairly happy. (Or at least not unhappy, as he was in the previous nursing home.) But do you know what the strangest and most surprising thing has been? It’s been therapeutic for me, too, to hold his hands and talk with him about the twilight of his life. It’s wonderful to know that he has no regrets, and that he’s not afraid …

  12. A very touching and heartfelt piece. It’s hard to break through the cult of youth that has been built and fortified. It is as if our fears have built a fortress against time that will inevitably collapse.

    • 29 hmunro

      What beautiful and wise words you’ve written, secludedsea. With each passing year I take greater comfort in the beautiful words of George Harrison, another wise man: “All things must pass.” I do hope that as lifespans increase our society will get better at celebrating and honoring all phases of life, instead of clinging to the illusion of youth at any cost. And on that cheery note … HAPPY HOLIDAYS! Thank you so much for taking the time to comment.

  13. That is such a sad story. I had a step dad that lived the last months of his life in a nursing home also. Toward the end he could not even feed himself. You could see the frustration in his eyes. I felt so bad for him and for my mom and everyone who had to watch him struggle. I get that everyone should have a good quality of life at the end of their lives. This brings me to the question of assisted suicide. I personally feel that God gave us life and He is the only one that should be able to take it. I am wondering what your opinion is on this issue since you went through this sad experience and if your opinion changed since??

    • 31 hmunro

      I’m so sorry to hear about your step-dad, Nels55. It really is heartbreaking to see frustration, or sadness, or even defeat in the eyes of someone you love, isn’t it?

      As for your last question: No, this experience with Sal hasn’t at all changed my mind about assisted suicide.

      Thank you so much for stopping by, and especially for your thoughtful comment.

      • Can i ask what your opinion is on assisted suicide?

        • 33 hmunro

          I believe you did ask once already, and I didn’t answer the first time, either. 😉

          I can’t imagine a more difficult or personal decision, so I would never dream of making a blanket statement about whether I think assisted suicide is empirically “right” or “wrong.” The point of my post was simply to share my observations — and to encourage my readers to consider their own attitudes toward death — rather than to state an opinion, or start a debate.

          As I said in my post, end-of-life care is an important topic we need to discuss more openly in our society — but I think those discussions will be most productive when we’re talking with our families and doctors about our own wishes for ourselves.

          • Oh I’m sorry I didn’t want to start a debate either..(I hate conflict LOL) I just like to hear other peoples opinions and thoughts on things. I learn alot by asking questions. Sorry Death is not something we want to talk about because it’s very painful. I know when my mom started talking about her death it was hard for me to hear but as I get older I can understand why she feels the need to have everything “taken care of” before she passes. I try to discuss it with my kids and they don’t want to hear it either. LOL I try to think about death as an end AND a beginning and it’s part of life but it’s still soooo hard to lose a loved one. It seems so permanent in our minds but if you are a Christian and you believe what the Bible says you can take some comfort in knowing that it isn’t a permanent thing.

  14. This was a well written post to get people thinking. I think that “quality of life” and what can make a “good death” are important, especially to the person who is living in the situation. My family has been intimately touched by dementia and Alzheimer’s. So I can also say from experience, that while the person whom I dearly loved was not their self/in the present most of the time at the last, when he had two very lucid moments with me,in the days and then hours before he passed, I greatly treasure those moments. It is one of my fondest memories, and I (and the rest of those present) would not have those memories if the quality of life or death were the only considerations.
    ~IDA

    • 36 hmunro

      My heartfelt condolences to you for your loss, Ida. I’m so glad you shared those two very lucid moments with your loved one near the end, and I do hope those fond memories will bring some comfort in the weeks ahead. As you point out so beautifully in the last sentence of your comment, there are many considerations as we wrestle with these end-of-life questions (among the others I didn’t touch on were religious beliefs, financial means, societal mores, etc. etc.). So I hope I didn’t give the impression that I was advocating for a particular outcome. Rather, I was meditating on the importance of having these conversations and making these decisions *for ourselves* while we still can. Again, my very best to you — and my thanks for your thoughtful comment.

      • Thank you. I understood that you were trying to stay away from advocating one outcome over another as to try and encourage a more open dialogue among people. I respect that. I was speaking from my own observations, experiences and also wanted to encourage further reflection from another aspect that someone may not have thought to consider.
        Best regards.


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