On Dying

My father-in-law passed away this weekend after a long struggle with Alzheimer's when his body (finally, one might say) caught up to his mind. Though I couldn't go to join my wife's family at his bedside, my wife did. She's a better writer than I am, so I'll get out of the way.

I used to think that dying of old age was like falling asleep. You lose all your strength, close your eyes, wait a while, then… done. It's not like that at all. Just like the cliches of birth — where moms are rushed to the hospital upon the first signs of labor and babies come out resembling perfectly formed 3 month olds — what we see and tell ourselves about death has little connection to reality.

My parents died of different causes. My mom, from cancer or chemo (as with any cancer patient, it's impossible to say which), my dad from Alzheimer's. But what struck me when I first saw my dad after he slipped into unconsciousness was how closely he resembled my mom on her last day: his body was bony and colorless; mouth agape and twisted; breaths shallow and forced. You could hear him gasp over the oxygen tank, which is saying something. It was noisy, with plodding, arrhymic but no less robotic bursts. After my mom passed and they took the oxygen mask off, we could see that her mouth was caked with blood. She looked like a skeleton. I didn't recognize her.

One of the hospice workers the night I arrived told us he bet Dad would die within an hour, maybe two. (None of the other hospice workers, who were unbelievably kind, would have said anything nearly so blunt.) Everyone was offended but I secretly appreciated his candor. Having been through this last year with my mom I wasn't sure how long I could hold out watching my father's tortured breaths. My brothers, their wives, and I stayed all through the night holding my dad's hands, watching him breathe, and waiting for him to die.

No one would ever admit it but you end up hoping that each violent contraction will be the last. That this excruciating fight will end. After it's over, we cover this lie with another lie, telling people that he died peacefully so that we don't have to talk about it. But when one suffers from Alzheimer's, "peacefully" means merely "unconscious." I don't have to worry about coming to visit my dad at his nursing home and finding him slumped over a wheelchair or soaking in his urine, his skin so dry it's cracked and bleeding in places.

The idea that anyone would have to go through this for a child is unthinkable. But I couldn't help but think of my son during this process: if losing a parent is so difficult, what must it be like to lose a child? Will my son one day have to go through this for my husband and I? He has no siblings. Would he be alone? Would I want to have him staring at me, this horrific image seared in his brain? My instinct is to spare us all from it, securing some kind of "kill pill" to take when the time comes. I took an epidural when my son was born and have no romance for pure pain or suffering. Is a kill pill similar? Is it cowardly? Or consumerist?

The truth is that if I live as long as my parents with my family intact, I'll be lucky if I need to answer this question.

Last 5 posts by Charles

Comments

  1. Chris Ho-Stuart says

    Thank you for that thoughtful and thought provoking post! It is much appreciated. I have just started work as a nursing aid in aged care, and primarily in dementia care. I don't know the answers to your questions; for anyone or even for me. I have nothing to add myself, beyond appreciating your sharing this.

  2. eddie says

    Thank you for posting this. I'm starting to think about these things myself. I too am thinking about my parents, and then about my children when my turn comes.

  3. efemmeral says

    Thank you for putting this topic on the table. Our culture, aided and abetted by religion, does a poor job handling death, and many suffer needlessly for the lack of knowledge. I am determined to be different. We leave for a vacation shortly and my reading list includes, "How We Die" by Sherwin Nuland, "Dying 101", and "The Final Exit" by Humphrey.

    Reading Popehat has reunited me with my inner rebel. Any topic this inaccessible, this laden with cliches, this off-limits should be opened like a can of tuna. Your wife had it right with, "No one would ever admit it…"

  4. PeggynotMargaret says

    These are situations and questions most of us avoid thinking about but will have to, in time, deal with first hand. Both of my parents have been gone for some years now, but I still think about the circumstances of their passing. My husband and brother each have conditions that will, most likely, cause their deaths in the next few years. Dwelling on the inevitable is not healthy. But ignoring it is irresponsible.

    Thank you for posting this.

  5. Mike says

    My grandfather spent the last year of his life stuck in a bed, his leg amputated, half paralyzed from a stroke, barely able to breathe or talk or see. In his lucid moments he asked God to kill him. The Almighty took his sweet time about it. I don't see why we should have to wait for Him.

  6. nlp says

    A year and a half ago my brother, my sister and I went through the shortened version of this scenario. Our mother had had a massive stroke. Her orders had been adamant: no extreme measures. She had watched her mother drift away over a period of months, she had watched her husband (our father) slide away over a period of years. So we explained this to the doctor, and he told us it would be a matter of waiting weeks, not months, for her death.

    Knowing her orders, knowing what she wanted, and having it written down and signed made our decision much easier. No feeding tubes and no extreme measures meant that our period of watching and waiting was cut short.

    Mom had been careful in having her instructions written and updated by her lawyer. When she signed the updated version a few months before her stroke the three of us met at the lawyer's office and listened to her instructions. We knew exactly what she wanted. After the stroke the three of us were agreed in letting her go quickly. Both the social worker and the doctor told us how much simpler it was when the whole family agreed on how to handle this final decision.

    Mrs Clark, I'm sorry you had to endure this. It couldn't have been easy to watch. But I hope your post helps people make up their minds about those final decisions that need to be made, not just for their parents, but also for themselves.

  7. I was Anonymous says

    Charles,

    My deepest sympathies to you and your family. Losing a loved one after a long illness is very difficult, especially when the loved one is "no longer there".

    May Hakadosh Baruch Hu grant you peace and healing.

  8. Liz says

    Last week, as I watched my third grandparent struggle and crawl to her end, as the dementia ate her brain and took her dignity from her by inches, I realized there's nothing so terrible as infirmity. Growing old can't be helped, and death is unavoidable, but it's the liminal step between the rest that comes with death and the slow of age. Age is you have to, die because you must, but never become enfeebled. There is no dignity down that road.

    My heart goes out to your family, we've just buried my grandmother so grief and relief is familiar right now. May both their souls find rest.

  9. MrSpkr says

    Charles, thank you for that somber (and honest) look at the terminus of human life. My condolences and sympathies to you, your family and loved ones. It is a difficult process.

    My father died just over three years ago. In retrospect, he had been in decline for a while, but I had refused to see it. He was actaully waiting on reports from teh doctor — he probably had lung cancer. The end, however, came suddenly — he had a massive heart attack and was gone.

    Initially, I had a lot of resentment that he passed. I had finally conceded a few weeks earlier that his health might be getting bad, and was planning on monthly visits to see him. The first was to be the following weekend.

    Now, with time, while I miss him terribly, I am so glad I never had to see that strong, proud man lingering for months. I cannot fathom going through what you described.

  10. Lynn Grant says

    One thing I wish people were more informed about is rallies. Both my mother, who died of cirrhosis of the liver, and my girlfriend's father, who died of Alzheimer's, had them. They were in a coma and near death, then suddenly they woke up and were all better, fully able to talk and carry on conversations, and eager to go home. But they were not really all better, and they died several hours later. Apparently this is common, but it is very upsetting the first time you encounter it, since it feeds into your hope that everything will be OK.

    My father died suddenly (thankfully) of a heart attack at age 83, but he had had a lot of medical problems, including leukemia and lymphoma. My brother said the first thought that came to his mind when he heard of my father's death was "He's safe now. Nothing more bad can happen to him." I think that is a wonderful and healing way to look at it.

  11. En Passant says

    I can add little to what others have already said here. Thank you so much for posting this intimate and enlightening insight into what we likely all face, the nature of death revealed when beloved parents depart. The alternative is that we face our own before our beloved elders.

    Grandfather dies, father dies, son dies (and its grandmother, mother, daughter conjugate) is the most difficult to contemplate natural order found in this life.

    I account myself fortunate because my beloved family members died suddenly. For all who endure the lingering deaths of loved ones, I hope that the experience imparts great strength of character.

  12. efemmeral says

    It's been noted dying animals are treated with more respect than dying humans, but that is regional. Belgian appears to have compassion where the US, at least, appears to have none. The problem is lack of choice.

  13. I was Anonymous says

    My wife passed away last year from ALS. Fortunately, she had an advance directive, I had PoA, and we had a helpful and understanding hospital staff.

    We all knew that the end was near, and she was on a morphine drip, to make her passing easier (for her, anyways). I shudder to think of what it might have been like in other circumstances.

  14. Grifter says

    I'm not good at expressing hew-mon emotion. But my condolences, and thanks to you and your wife for the post.

  15. Some Random Brit says

    I watched my wife die of lung cancer. It was just 6 months after she was diagnosed.

    She was in the hospital because of some chemo side effects, but doing well. One night, I received asking me to come immediately.

    The doctor explained that a blood vessel deep in her lung had burst, and nothing could be done. I stayed with her for 12 hours until she finally passed, essentially she drowned from the blood gradually filling her lungs. It was bloody, it was awful to watch.

    The worst part is that she was able to completely understand what was happening. The oncologist suggested that it was probably best if she was heavily sedated as it would be the least traumatic (for her). We said our goodbyes and then she was sedated to the point where she wasn't conscious.

    The point of all this is that the doctor understood how best to ease her suffering. The best that we can hope for is that we all have an understanding doctor who is willing to ease us out of this world. Dying in a hospital or hospice is probably as good as it gets, but it still can be traumatic for all concerned.

    Euthanasia is certainly appropriate as it lets some people die with dignity and on their own terms. There need to be certain safeguards, but it is a reasonable option for many who linger with no chance of recovery and a huge amount of pain and mental and/or physical suffering

  16. Jerry says

    I feel your pain. I went through something similar a couple weeks ago. I went to Florida because my father was admitted into a hospital. It turned out to be pancreatic cancer. He went from being healthy to not being able to eat or drink. I was able to get him back to Chicago on an air ambulance but watched him die slowly each day. I was holding his hand the day he took his last breath. To make matters worse, my wife called me before I left Florida to let me know that her father suddenly died of a heart attack. Instead of taking our two young daughters to Tennessee for spring break, we buried two grandpas in two different states.

  17. Kristen says

    I am sorry for your loss. We went through this with my father–4 days of continuous shifts at his bedside, helped by amazing hospice workers and nurses. By family and friends who brought in a constant supply of food and took over feeding the children and dogs without ever having to be asked for help. There is nothing quite like a death watch–it's humbling and grounding and terrible at once. The night he died I went home for the first time in a week. I remember I turned on the news and my exhausted and mangled mind expected to see a report about his death on TV–his departure had changed the world, hadn't it?

  18. terryg says

    Charles, thank you for posting this; i am so sorry for your loss. it is heartbreaking to lose someone so close – my darling wife died of cancer, 17 months ago. a week after our 6th anniversary, a month before her 46th birthday. like so many others, i understand the anguish of holding a loved ones hand as their life ebbs away. words fail me.

  19. Allison Williams says

    Deeply sorry for your loss. I lost my father to diabetes and I was not even there! We were very close, you can say I was his darling daughter. It breaks my heart everytime I think about it.

  20. says

    My sincere condolences. This reminds me that I need to put together a living will so my own family doesn't have to make any hard decisions if/when the time comes.

  21. Cary says

    Come to Oregon for the mountains, ocean, rivers and deserts. Stay for the death with dignity on your own terms

  22. Bryn says

    My sympathies for your family's loss.

    There is no way to make death easy. My Mom died when an abdominal aneurysm broke (a relatively "quick" death) and my Dad died from a combination of COPD and emphysema (a relatively "slow" death). Not to get too philosophical, but we've gotten too far removed from the reality of aging and of death. People are whisked away to hospitals or hospices or nursing homes of varying sorts. We see our loved ones intermittently and are amazed by the changes–changes that wouldn't have seemed so drastic had we seen them happen gradually.

    There is no way to soften the blow of death, to make it, somehow, easier for the survivors to handle. The loss is still there. The grief is still there, raw and biting and waiting to strike at the oddest moments. While I agree with the idea of "death with dignity" and would use it myself under certain conditions, I'm under no illusions that it somehow conveys "death without grief" to the survivors.

  23. says

    Thanks to all for your thoughtful replies and for sharing your own painful stories.

    And thanks also for not turning the comments section into a debate about the ethics or law of euthanasia, even though our story and others easily could have been taken as a political provocation.

    Closing comments because I don't want to start that debate by accident with my thanks.