Far and away, the most comments at Hospice Matters were from those whose dying loved one didn’t die. They lingered. In 2016, I wrote Why Hasn’t He Died Yet? Responses from readers, many with heartfelt and anguished caregiving experiences, keep coming. That post, followed by a few sample comments, is posted here.
Below is the original essay I placed online in 2016. Since so many caregivers responded to it, I wanted to keep it available. While I received many comments on many different topics related to hospice care, none matched the outpouring of anguish and isolation felt by caregivers supporting a dying loved one who keeps on living . . . and living.
There are a handful of sample responses from 2017-2022 following the essay.
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Why Hasn’t He Died Yet?
Why hasn’t he died yet?
The doctor said she’d die days ago.
Mom is ready for heaven; why is she still here?
I love my husband, but hate that his suffering continues.
Hundreds of versions of the statements above are muttered and shouted by the hundreds of lovers, friends, family members, and caregivers that—right now—sit vigil with a dying loved one.
And “sit vigil” may seem too polite a phrase for those waiting-waiting-waiting for a long overdue death. Pacing a room, sleeplessness, exhaustion, short tempers, frayed nerves, and constantly postponing work and family obligations were never anticipated when a beloved’s dying became an unwanted, unbidden part of your future.
The person we love, who we once wished would never die, is now lingering. Before, we made every effort not to think about death. Death was too morbid. Death happened to someone else. Death was a game with colleagues wagering that if one “celebrity” has died, then more high-profile deaths would soon happen (“They always come in threes!”). Death was the rabbi or priest or imam or pastor’s sermon about an ancient saint or sinner. Death wasn’t so bad in a movie with a soundtrack that prompted tears while munching popcorn. Death was horrific because of a car accident, a malicious bullet, or a soul-numbing suicide . . . but it was all over quickly and terribly.
But your loved one lingers.
Why? Why? Why?
I suppose hospice has done this to itself. From the beginnings of contemporary hospice care, there has been a predetermined time limit for a dying person: six months or less to live.
Now you can set your clock and mark your calendar? Oh how we may complain or curse (or even consider a lawsuit) when a loved one dies in less than the predicted time frame.
But your loved one lingers.
I suppose modern medicine has done this to itself. Aren’t most soon-to-be parents informed about the due date of their child? Those requiring a C-section already have a convenient (and specific) appointment with the doctor. Patients are given survival rates for surgeries that have such reassuring statistics. We take medications and physical therapy for precise periods of time. If one treatment doesn’t work, try another . . . and another. Soon, you will be better.
But your loved one lingers.
Is your beloved in pain? Sometimes it seems so, and her or his continued pain causes anguish for the whole family. Sometimes there’s no obvious discomfort, and they keep breathing . . . and breathing. The compassionate care you provided weeks or months ago festers into resentment.
The faithful may say God isn’t ready for them yet. That satisfies several in the waiting family, but for others it could mean the smidgen of optimism once felt about religion and heaven and eternal life have now become a joke without anyone laughing. Perhaps your loved one openly prays for God to “take them,” but nothing has changed! How useless God seems.
The hospice physician and hospice social worker, with different training and perspectives, both say the exact, frustrating thing: we don’t know why he or she is still alive.
How can the experts not know!
But your loved one lingers.
Kind and logical, or kind and illogical, reasons are suggested . . .
- The dying must be waiting for that one family member to arrive.
- The spouse still hasn’t given them “permission” to die.
- The new grandchild hasn’t been born yet.
- They wanted to die (before, after, on) her or his (birthday, anniversary, Mother’s Day).
All reasons make sense, except when they don’t. Except when you are camped by a rented hospital bed praying for death, and all that’s heard after the “Amen” is the seemingly ceaseless breathing of your beloved.
My elderly mother lingered. Doctors said cancer had rapidly destroyed much of her body, but she was strong. How could I, her loving son, beside her bed in a dimly lit room in a care facility, momentarily question all those years striding around the neighborhood on her daily walks? The cancer didn’t care how many miles Mom had logged on the suburban sidewalks. Would she have died sooner and therefore suffered less if she hadn’t been in such “good shape?” How could I think that? But as the hours became days and days became next week, how could I not think that?
In the end, especially when it feels like there’s no end, all of the reasons given by kind nurses or well-educated doctors or empathetic social workers or comforting clergy will seem as believable as convincing the presidential candidates to keep their responses simple and honest.
I wish I had the perfect answer to the soul-wrenching why-are-they-lingering question.
I wish I had even some barely adequate words for a partial answer.
Sometimes the dying linger. Sometimes there is no rhyme or reason.
But I pray you still cling to enough of the positive to focus on today. You may despise the absence of a logical answer, and you are probably exhausted beyond description, but I also pray that you understand this is not your fault. And it’s not your loved one’s fault.
Dying, like the best and worst of our living, has its own schedule.
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Earlier Comments to Why Hasn’t He Died Yet?
Since 2016, scores of caregivers to dying loved ones shared their stories with me and with other readers. I made sure to contact each person. Though unable to provide any simple “solutions,” I wanted them to know they were heard and not alone.
When I decided to pull Hospice Matters from the web, I wanted to make sure the original essay was available on this new website and to have a sampling of reader’s comments. I somewhat randomly choose the eight responses that are below.
September 2017: When the lingering goes on for years!!! Two years ago my mom was given a few hours. My brother rushed in from another state-through dangerous blizzard conditions. Then two weeks. Then two-eight months. Then a few days. Next a few months again. Then “you’ll be dead in two weeks if you don’t swap to the new TKI” said the cancer specialists. Months passed again. Then back to the cancer specialist who was shocked to see her alive. Then…finally the “we don’t know why you’re alive-this has never happened before.” She’s still here. Lingering. Each day the last for two years while she pulls us into the grave with her. Her boney fingers covered by crepe paper thin skin caress and cling to us while we cringe in horror and guilt. She refuses to “stop treatment ” so we cannot get help from hospice. Yet she’s lingers outside of death’s door. Looking in, accessing the furniture, trying to decide if feeling nothing is better than feeling terror. She rages. She cries. We yo yo between rage and resentment. Whatever love we once felt for her buried deep beneath the layers of tortured time sitting near her, listening to her body empty itself of fluid time and time again. Smelling death, then becoming unable to smell death as the fragrance fades to a background scent that cannot be discerned from from either the sweet scents of a summer garden to the stench of the rotted garbage long festering in the back of a freezer. Frozen in time. The world carries on without her, or us. As we die with her.
June 2018: I married a seemingly healthy man 18 months ago. Possibly within 30 days, some switch was turned to “off,” and his health deteriorated but he just kept hiding it. Fast forward to 4 months ago: big late stage COPD collapse, with him on hospice and “dying” ever since. I’ve now moved him to a care home (which for anyone who doesn’t know about these things yet is private pay). He has been in a bed and is cared for like a baby–think “cannot tend to even the most basic of personal hygiene.”
One day he looks as tho he may take his last breath during the next minute. The next day he is sitting up/texting/eating/joking. It’s a complete mystery to his caretakers and to me – and quite frankly: I wish it would just END.
He is trapped inside a useless body and I am trapped in a financial obligation that I resent. On another end of the spectrum: last October my former husband fell ill, and gracefully, peacefully passed away with such dignity almost immediately. The short, sweet death left his daughter and me with such loving memories.
A long and lingering death can taint the brain with images you want only to erase.
November 2018: Caring at home for my dad’s daily (3 years) of “final stage” (according to our hospice care) forces me to take a raw look at life. what do i want, really? what am i really doing, and what’s important. his care has forced relationships into uncomfortable territories as my family goes around the clock together with scheduling. who will help us….and who will not. we learn what it means to really give, even if we think we don’t have it. wow, did we know we could go without our own wild desires for this long? we have become more chrystalized with priorities. we are in a crucible. dad is teaching us many things about reaching outside ourselves. i am so grateful for this, and yet…i long for just one or two wild desires now and then….badly…
June 2019: My dad has been in hospital now for just over a month. Initially admitted due to a fall and then developed pneumonia and meningitis. Two weeks ago he had a massive stroke and has been in a coma ever since. Dr gave him 1 week to live and we are now into the 3ird week since his coma and he is still lingering. I hate that people tell me and my fam to tell him its ok to go. How can we presume to have control over peoples lives as to tell them when to die? I hate that people say he has unfinished business. my dad lived with me and prior to his fall spent his days reading and watching tv. what unfinished business? And I especially hate that people tell me his waiting for his brother, relative, son or some one else to come and see him so that he can go. Who is so powerful in any persons life that that person would “wait” to see you so that he can die.
I have realised that his lingering is just medical. He’s body’s defences are kicking in and trying to heal itself and it will do so until it can no longer heal and then it will die. why must it be anything else…why do people make death and dying such a drama. Dealing with my dad dying is easy. I sit with him, I talk to him. I don’t know if he can hear me but I talk and tell him the stories of the day,etc. Dealing with people tryin to look for other reasons why he is lingering is what is upsetting and exhausting, not only to me but to my daughters and my husband. I wish people would really keep their opinions to themselves.
August 2019: This blog post has validated so much of how I and my family have been feeling.
Dad went from hospital to hospice with “days”. I booked that credit card exploding ticket and flew over. 3 weeks later he is… lingering. Dr. says days to weeks. Return flight cancelled.
Extended leave booked. Car rental renewed.
He cannot eat due to the nature of his disease but often forgets and looks at us like we’re torturers when we can’t give him a bite of toast. A twist of the knife. His life was food and banter, so naturally his larynx has been affected too.
Every evening like clockwork, he bursts through the heavily medicated haze to croak
“ f—k this place, where’s my coat, I’m going home!” But he can’t go home. He knew this but his brain, in an attempt to cope, refuses to accept it.
“Dad maybe we can ask the nurse tomorrow.”
I am torn between readiness for his nightmare to end, and dreading the finality of his final breath.
I wonder if he is lingering until he can see the house again, because he didn’t say goodbye to it. I feel horrible guilt that we can’t do that for him.
September 2020: Thank you for this. It is so exactly what is happening here. My uncle has siblings, and children, and friends but nobody would take him but us. We could have had him in a nursing home, but were unable to get his financials together, no POA, he was confused, he burned all his papers because the aunts had tried to place him a year before. He alleges to be Christian, but he fears death I believe. The hospice nurse sees signs that death is close. So do I. He refuses to go. Just constantly telling everybody he’s tired, he’s in pain, but he won’t let go. His children won’t come see him, his siblings can’t. If he’s holding out for this he will outlive me and I’m only 58. The family cannot come, but they can criticize me. My husband is a saint. He’s still here. But so is my uncle.
February 2021: I have battled with trauma left by my father lingering on. We are almost two years since he passed to cancer and here I am, awake, in the middle of the night, sobbing at remembering those final days and googling about death to try to find some answers to questions I don’t even know I have.
I have felt a tremendous amount of guilt and pain knowing I sat at his kitchen table and thought to myself, ‘Please just let go Dad.’ It has been a thought that has tormented me all this time.
Your story is very similar to mine in events and I cannot explain what your story has done for me. I thought I was a cruel person, damned for hell and the worst possible daughter for thinking such thoughts. I know I thought those thoughts out of wanting relief, but I don’t know if the relief was more for me than him – that’s where the guilt comes in. For that fleeting thought to even momentarily cruise through my synapses causes me such pain.
My sister and I left him with his wife to get a pint of milk and some fresh air. We both said to our unresponsive father , in an eerily synchronised manner, ‘See you later, Dad. Love you.’
Within minutes, he passed on and I had never felt such relief.
Thank you so much for sharing your story and allowing me to feel like it is actually a normal response to want the suffering to end.
April 2022: I somehow stumbled on your website and am grateful for this essay.
After taking care of my husband who first had throat cancer 10 years ago. (I thought that was rough) 5 years ago he was diagnosed with Lewy Body Dementia with Parkinsonism. It has been quite a journey. I needed to be on anti-depressants for awhile just to be able to sleep and take care of him. Then Covid hit and we became so isolated.
He has now been in hospice, first at home and then, since May in a nursing home since even with hospice I could not longer care for him in our small apartment. He is declining so slowly. Bedridden since May, losing weight, hardly opens his eyes, and now a bed sore.
I am so grateful to the compassionate staff and the hospice team.
Yet living in this limbo of wondering how much longer he will be with us has worn me down. I feel like my soul is tired and I don’t really even know what I mean by that. I have been flooded lately with the good memories of him, which had become buried while I was in the weeds of hands on caregiving. I miss him terribly.
I do find that having a spiritual perspective has been helpful. It’s difficult to articulate, but I have learned a lot about myself, about compassion, about self-forgiveness, about what matters in life, from this long difficult journey.
Thank you for reading.