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.

I don’t.

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.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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  1. Why don’t more states allow euthanasia in cases like this? Lingering is not in the best interest of anyone, the dying, the family….

    • Thanks for reading and taking the time to comment, Stanley. Your question is one that many ask. But there are also many who’d strongly resist “legalizing” any version of euthanasia. It’s one of those emotional, divisive issues.

      • Without commenting on euthanasia specifically, I’m not sure that we can know with certainty how suffering benefits anyone in this world. Each individual will take (or not take) some meaning from it. I understand that not everyone believes in an eternal life, but I do. Perhaps we will not understand the reason for suffering here until we pass from this life. I trust that the maker and judge of all the earth will do right by his creation. I write this as my 94 year old mother lies in a bed, unable to take care of even her most basic needs, and is totally reliant on the support of caregivers and family. She has little desire to eat and has difficulty drinking any fluids. She just wants to have her pains eased. Who is benefiting from that? Since I cannot know now, my only choice is to trust the One who I believe made all creation. I believe that we ask the question about what is apparently needless suffering not only because of empathy, but also because it causes deep emotional pain for us to see others in pain.

        • Bill –

          Thanks for reading and responding. So glad you are taking care of your mother at this difficult time. You are pondering questions–about suffering, about faith, end of life decisions–that challenge all of us. I’m also glad that your own strong faith is helping you as you give support to your Mom. Take care . . .

          • In a nursing home with my dad who is dying.Thanku for writing this.It has helped.Yes he is lingering in dying but no I dont rush him.He will go in his own time and I will so miss him but until then Im glad for this time.

          • Wanda:

            Thanks for finding my hospice website. Even more, I am grateful for you willingness to be with your father. When a loved one “lingers,” it is never easy . . . but how humbling to read your “I’m glad for this time.”

            Take care!

          • And now it has been one year since Mom passed away. We, her four children, still remember her. On this November 1, 2019, my sister, her husband, and I were together in Ohio. We called our two brothers, scattered by miles, in Arizona and Kentucky. And in the hour of Mom’s passing, we all remembered our mother, and toasted her memory, and the legacy of her family, with a glass of the wine that she always loved the best. And we all long to see her again, with our father, in the time and world to come.

          • Thanks, Bill!

            I re-read your prior comments from 2017 and 2018. I appreciate you “following up” and sharing about your mother, and your family’s remembrance, a year after her death.


      • Thank you for sharing your experience and your perspective. I found your website because I am trying to find a healthy outlet for my anger and confusion.

        2 months ago, my Dad was celebrating New Year’s Day with my Fiance and I. He was having a little trouble getting around, just as most 76-year-olds do, but he looked great and appeared to have another 20 years ahead of him.

        Then came a fall in a local shopping center a week later, immediately preceded by what he described as a ‘sucker punch’ under his Left Rib cage.

        Within a week, he was diagnosed with Colon Cancer and given 5 years if he could tolerate Chemo. That’s my Dad, so ‘Piece of Cake’ right? 2 weeks after the ‘sucker punch’ he had a PT Scan. 2 days later he fell to the floor, unconscious and unresponsive.

        4 days later in his dark, post-modern hospital room, he was given the awful truth – Cancer in his Liver, Abdomen, and Lymph Nodes. The large mass of Cancer in his Colon had also eaten a hole in the colon wall, resulting in an infected abscess.

        5 years quickly became 6 months.

        He was weak, too weak to walk, too weak to get out of bed without assistance, and clearly, too weak for Chemo.

        The day after his 6-month sentence – after extensive review by his team of Oncologists – his sentence was shortened to 3 weeks.

        He was discharged from the hospital after meeting with the Hospice Social Worker, brought home in style in a fully-accommodated Superior Ambulance, and settled into the front room opposite the large picture window he so loved peering out of, where he has laid since in a rented adjustable bed, his last words uttered within a few days of being introduced to his Hospice Nurse.

        Now, he doesn’t move at all. He hasn’t eaten or drank anything or had a bowel movement in a week. He stopped passing urine 4 or 5 days ago. If he opens his eyes, he looks past, through or around whoever may be in front of him. His feet are purple and his hands are like blocks of spear-tipped ice. He doesn’t respond to anything – to squeezing his hand or asking him to blink or rubbing his feet. Nothing. He makes no sounds, other than the rhythmic breathing you could set your wristwatch to.

        I cannot subscribe to the idea of being Grateful for spending this time with him. That is selfish and only makes those that are still living, self-sufficient and functioning feel ‘better.’ The most loving thing that anyone in this state could receive is the assisted transition to the Hereafter.

        He has been reduced to a functionless body. The man I knew, the man who raised me and taught me how to be a man, is gone. Only his Cancer-rittled, all-but-lifeless body remains.

        Lingering is cruel not only to the dying but to the living as well. The agony of watching someone I Love and Respect waste away to nothing, then left to linger at death’s doorstep has stirred within me a sort of Helpless Rage that I am Powerless to do anything about.

        I have begged God for His Mercy. I have begged and pleaded with God to come and deliver my Dad to Eternal Paradise.

        Still … he lingers.

        • Randal:

          While your words, and you and your father’s (and family’s) situation is so impossibly difficult, I appreciate you taking the time to tell about what is going on. I do hope this is one, insignificant, helpful way to be a “healthy outlet” for your rightful “anger and confusion.”

          As you can see from other comments to my original post, you are not alone in your profound frustration. And yet, of course, as you care for your father, you likely do feel alone . . . and endlessly feel anguish.

          All I can do is humbly thank you for sharing.

        • On December 10th my 92 yr old dad was diagnosed with end of life pancreatic cancer. It is in his gall bladder and his bile duct. They also found lesions on his liver and kidneys but they were too small to categorize. He has been home 1 week and 4 days. No food for 9 days and no water for 3 days. The people he wanted to see have come and gone. But he lingers. Had a few bouts of his BP fluctuating and his pulse has been over 100 for days now. No fluids going in his body, yet he still has urine and the bile duct drain is still collecting fluid. He is unresponsive except changes in his breathing when I touch him. Its just a shell there now. I feel his pulse, its still strong. I have begged God for his mercy. Been doing so much research it is nuts. I understand that God has a plan, it hurts me to watch him detiorate like this. I am alone in this with him, I am tired, my heart hurts. I want him to have peace. But he lingers

          • Patti:

            This is such a difficult time for you. With situations like this with your father, I wish I had “magic” or “the perfect” words to explain. But I don’t. I am glad you shared this, and I hope that others who read your words will know they are not alone as they care for–alone and exhausted–someone they love.

            Sigh. Take care.

          • Patti,
            I am currently experiencing this with my mother and I’m shocked by the depths of anguish it has brought me to.

            I hope
            You have found some peace since your post here.

            Thank you for sharing.

          • Emily:

            Thanks for adding your support of Patti to this conversation. And, without knowing any of the details, I am so sorry to learn about your mother and the anguish and stress of your caregiving for her. Take care . . .

        • 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.

          Tour 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 dont 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.

          Take care

          • Tracy:

            Oh, my what you have been through! If I could “magically” wave a wand, I would remove any and all of your guilt. I do hope you have some supportive friends and family and can sometimes “vent” with them, listen to their encouragement, and be reminded of how much wonderful support you gave to your father.

            I am glad you found some helpful words in the experiences that Randal Stowell shared.

            Take care . . .

          • My dad passed on January 2nd 2021. I was there for his last breath and like you I prayed for God to give him peace. I was numb when he finally took his last breath and am still numb. Thoughts Going through my mind…what if I did this differently or why did I ask God to take him? Life has been so different since his death. We used to speak everyday. I miss hearing his voice. Family matters has been very stressful over his will and I know he would have never wanted things to turn out like they have. I had a breakdown about a month after and had to take time off, the visions of him dying haunts me.

          • My oldest sister is weak and passing due to stage four cancer I seen her last in her home on her couch sick and told me she was hurting all over her legs back I rubbed her leg and we prayed and cried that was the last time I seen her now she’s in hospice and hanging on now everyone seen her but me, I do not wanna see her suffering and this way this has effected me bad mentally and just can’t see her this way is this the reason why she hasn’t passed yet, is she waitng on me to visit her?

          • Denise:

            You are asking a tough question that probably doesn’t have a “perfect” answer. We don’t know why someone lingers, though it often can seem like they are waiting for someone or something or some date. I would encourage you to do a couple of things.

            First, while seeing a loved one suffer is hard, what may be harder later on is not taking the time for another visit. Only you can know what is best for you, but I would “push” you a bit to consider spending a little more time with your sister.

            Second, talk with the nurse or chaplain or social worker on the hospice team about how you are feeling. They may have input that would be helpful. Would one of them be willing to be there when you visit, for your support and for you to ask questions?

            I am glad you added comments here. Take care . . .

          • Thank you for sharing. I am currently in that same situation. I moved my dad in w me in April 2021. It is now January 2022 and I am exhausted. I am also a single mom w 2 kids (17 and 3). I cant understand how my dad is still functioning. He is yellow from the cirrhosis, multiple primary cancers w mets is several locations, and COPD. He is barely eating now but somehow he still gets out of his bed in the morning, goes to his chair in the living room, and back to bed for a naps. I didnt grow up w him around so it has been like having a stranger in my home. He isnt nice to my children and I have snapped at him so many times because of it. I feel so selfish but he is just as miserable as we are. I dont understand how or why he is hanging on. My belief is he is in denial and he is scared.

          • Nikki:

            Thanks for taking the time to comment. You are in a difficult, frustrating (on a hourly and daily basis) situation with your Dad. I was not clear from your note if he was currently on hospice care? If he is, are they giving you enough support? If he’s not, it might be helpful to have him evaluated for their extra support. Regardless of hospice, and my obvious ignorance of the pressures you are dealing with, is there any way of you getting more family/friend or hired support? One of the things I often suggest is seeking more occasional or regular help. For many caregivers that’s not easy (or it’s impossible). But I suggest it knowing people need breaks. You do. Your kids do. And, in many ways, your Dad may benefit from contact with others.

            I know finances can be tough. This endless pandemic makes adding other people into the support mix also tough. With what you describe, he could go into a downward spiral “soon.” But he could also linger for many more months. If there are any changes you can make to help you and your “sanity,” it could be helpful now, and for the unpredictable future.

            Again, thanks for sharing. As much as possible, take care . . .

      • Larry I am sitting here with my dying husband. He lingers and it is absolutely excruciating for me to watch this. While reading your article I felt you were reading my mind. This hurts so badly. My stomach in knots. My heart breaking in two. I’m beyond asking why? I’m just a machine going through the motions everyday for God knows how long. I needed so badly to read your article. I will save and pass on to someone else who is going through the same pain.
        Thank you and God Bless.
        Corinne G.

        • Corinne:

          Oh, I am so, so sorry for what you are going through. But, no surprise, I am without any words that will bring relief or comfort or understanding. I won’t use cliches or platitudes. What you are dealing with is impossibly difficult. I am glad you shared . . . and am deeply grateful to you for doing that.

    • 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…

      • Kitty:

        Thanks for these comments. As you may notice from all the other responses on this post, a lingering death stirs many reactions. No surprise. I appreciate your honesty. Through your words, I sense both weariness along with an openness to what hopefulness today may bring. That’s a demanding balance to keep. I am glad your family (most of them?) are helping with your Dad’s care.

    • I am a Hospice Chaplain. Several of our patients have chosen this route which is legal in our state. I sincerely wish it wasn’t. I’ve been asked by the patient to be there for their “assisted suicide.” I found it to be horrible. They are supposed to prepare and administer the poison themselves, but are rarely in condition to do so. Most family members are not only ardently wishing ggeur loved one had not taken this path but find themselves having to hand the poison to their loved one. Then there is the agonizing hour plus waiting for the preparatory drugs to take place before the house given.

      The time I agreed to be there for a patient who I had sat with during many hours of them trying to assure themselves God would approve of their decision – I will never forget the anguished sobs of their favorite grandchild, the tears on the faces of the family members who had tried to get them to not choose this path but nevertheless came to say goodbye – as long as I live. And most who choose this would have only lived a few more weeks anyway.

      • April:

        Thanks for your thoughts. The decisions for some that include medical-aid-in-dying should never be “romanticized.” While it is legal in some places, and there are “good” stories about families and patients having a generally positive experience . . . those are not the only stories. As difficult as it was for you to be with the patients and family, I am glad you were. In whatever way you can, speak your truth. Let others know what you think. In hospice, we try to do the best we can in supporting the decisions of the patients. That never means it will be easy.

        Again, I so appreciate you sharing this.

        • Larry, I think it’s necessary to speak truth to the religious. April doesn’t believe in physician assisted suicide. She believes only God has the right to take a life, even when He doesn’t take it–frankly when He doesn’t show the slightest interest in intervening one way or the other. And when God doesn’t relieve a person’s suffering and they go on and on and on doing nothing but suffering horrifically, then God abdicates His right to take life and the right falls into the hands of the person suffering. Anyone who wants to take their own life with the help of a physician should have no qualms about facing God in judgement. All they have to do is confront God with the logic of the situation, “I couldn’t stand the suffering; it wasn’t doing me or my family the slightest bit of good to linger, so I took matters into my own hands.” If God is the merciful Being Christians say He is, then there won’t be any condemnation from Him when someone steps in to do the job He failed so miserably at doing. Just something to ponder when it is a person’s time. Just for the record, I’m going through the same thing with my poor 99 YO mother whose suffering horribly but whose staying power is phenomenal.

  2. 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.

    • With humbleness, thanks for sharing this. It must have been hard to write (and I imagine has been anguished to live through), but maybe expressing it “helps” in some small, insignificant way.

      I have no helpful words of response. I do know that this sometimes happens. It is costly at every level for each member of the family and for the entire family.

      And I just tried to send you a response through email . . . but (no surprise, given your “anonymous” email address) it’s not a working email.

    • So saddened to read your compelling and well written famliy story. I have been working in Home Health and Hospice for 25 years and have sadly seen this played out many times. Have you looked into finding palliative care for your Mother? This care helps s person and family deal with a life altering illness or condition. Peace be with you.

    • 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.

      • Carla:

        Thanks for adding to these thoughts. And I am so sorry for what you are dealing with . . . every day, hour, moment.

  3. I am.trying to sleep in the lift chair next to the hospital bed my 89 year old bed bound mom sleeps in as I write this. She has resided with us for 5 years. . With a slow decline the last 2.5 years and significant decline since Dec.
    We have hosluce palliative care for years now with daily visits. We have mediocre to poor moments in a day. She is bed bound. Needs hygiene changes Bed baths Needs her meds and meals to be fed to her. She is completely dependent. She cannot stand or walk….We have daily companions so We are fortunate my parents were savers… I am very spiritual but too ask Why. Why does she have to suffer. The pain. The indignities . My mom was independent retiring at 83…. I grieve the loss of her daily. I worry about our 11 year old daughter and am hypervigilant about her not seeing Nana suffer and keeping my mom comfortable. Our home is like Grand central station with companions and hospice in and out. I will miss her forever but cant stand the suffering. I feel every bit of it. My mom.in law is in hospice at her home with my husband’s help.3 times a day. I wonder how strong God thinks we are as this is going on for years…It is torture to watch. Not wanting to her to go but not wanting her .to suffer.I love our hospice staff and they understand the .emotional rollercoaster this life has become. I switch from anger to tears very easily….I have been instrumental in her care for so many years beyond hospice. I feel a part of me will go with her. I miss my dad who died without any warning 22 years ago. I even get mad at him for not helping…The Saints we pray to..I am.exhausted on all.levels. My counseling practice is on hold. I don’t mind that.
    Family first. But the slow deterioration is almost impossible to bear. I hold on to some grand plan we won’t know until we become with God and our lives are over and we will be reunited with all.our loved ones…..In the meantime my heart aches and I am.tired mentally, physically and spiritually.

    • Lori:

      With humility and tremendous respect, I thank you for sharing this. I truly have no adequate words for you. You are asking honest questions about suffering, and there are never any meaningful answers. Why is there suffering? What is God’s role in this kind of dying? Those questions and more plague us, and any answer that makes sense for someone, feels useless for another. I refuse to give you any cliched answers or comfort. All I know is that I appreciate you sharing these vulnerable, anguished sentences. My guess is, at some point after your Mom’s death, you will need to keep writing and sharing about her dying and death. You will need to keep being angry at–and missing and loving–your father. You are grieving now; you will grieve later. I believe you are correct: a part of you will “go with her.” But I think the fragile and strong love you have for all of your family will (I hope and pray) help the slow, honest healing that will also be part of your life.

    • I feel like I could have written this. I’ve witnessed death many times as a nurse. I’ve been there for my mother in laws passing, my brother in laws as well as my own fathers. No matter how many times you see it or are are involved it never gets easier. I’ve found that in my case with my mom it has gotten harder……immeasurably harder.
      I’ve taken care of her as promised to my dad when he passed away 5 years ago. She’s lived with me for 3 years and has been total care for the past 1 1/2 years. I’d like to say this has been an easy promise to keep. It has not and has been filled with forgiveness over and over again. By the grace of God her dementia has progressed the past 4 years to the point it allowed us to rebuild a new relationship. I still mourn the mother she never was but I wouldn’t trade these past 3 years for anything.

      Perhaps this is why this has hit me harder than any other loss. 3 years of bathing, changing diapers and feeding all while building memories with laughter and knowing I fulfilled my promise to my dad.

      3 years seems to short but in these final days time moves so slowly as her body fights to hold onto life. I came to this site for answers as to why she might be holding on. I’ve given her permission to let go encouraged her to find my dad who is waiting for her, kept her comfortable and assured her she has been forgiven. Yet she still hold on and while I’ve met her every need for the past 3 years I can’t fix this for her. Perhaps that’s the hardest aspect of this process…..as I pray for her to join my father.

      • Betty:

        So glad for you sharing your experiences. I don’t, along with the readers who have also shared here, don’t have any “answers.” What a struggle this can be. You mentioned the positive of this time–rebuilding a relationship–but the negative is there, daily and hourly: the questions, the uncertainty, the inability to “fix” something for a beloved mother.

        As I’ve said with others, I hope you have some trusted, caring friends/family that provide some support for you during this time.

        Take care . . .

  4. I’m sitting here with my mom in hospice. She has stage 4 ovarian cancer that has spread quickly to other parts including her stomach & filling her lungs with fluid. She also has COPD & emphysema. She’s been here almost 6 days. She gets worse everyday. She gets morphine & ativan every few hours. She’s been hallucinating for 3 days now, seeing family that have passed & other objects. Yesterday she started telling us all she loved us & she was sorry. She was scared to go & leave us. We all told her we would be ok. She did this twice & we thought both times she was going to pass. Today she told us all she loved us & also said it was time to go, that her ride was here. We all thought it was time for sure. She said this at least 4 different times over a hour period. She closed her eyes & her breathing has slowed. It has been almost 8 hours now & she’s still asleep & with us. I’ve been praying so hard for her to go quickly so she’s not suffering anymore. Its so hard watching this all. Ironically in less than 30 minutes, it will be the 2 year anniversary of my stepdad’s death. He died in the same hospice center we’re in too. I think she may be waiting until then to join him.

    • Kristen . . . what you are sharing (and experiencing) is so difficult. I can recall spending day after day by my mother’s bed in a hospital, praying the same kind of prayers you mention. The anguish of waiting, of multiple “goodbyes” is deep. I hope you have some support, others spending time with you and your mother.

      As hard as it is to share these words, I’m glad you took this time to express them . . . and I hope they will help others who may read this and may be in that awful time of hours and days blurring into more hours and days.

      [Added comment . . . I sent you an email at the one listed, but it bounced back.]

  5. I especially appreciate your last few sentences. As our mom lingers in an active dying phase, I think we need to recognize that — although we all want what is best for her — the time of her death will arrive whenever it arrives. It is not in our hands; it is probably in Mom’s hands. We just want to do what we can for her, but to be knowledgeable enough that we do not inadvertently cause her to hold onto life longer.

    • Thanks, Joan. While always inadequate words, I do hope that things for your Mom, for your family, go as well as possible in these final days. This is never an easy time.

  6. 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.

    • Carol, what you have written is so painful to read. At the most minimum, I am humbly grateful for you sharing this awful and unfair journey. There may be others who read this who can “relate.” But even for those that may be able to, it is your situation, and your pain, and your commitment, and your anger, and your love, and your profound frustration.

      I hope you have someone or someones to talk with during this time, people who can offer you a listening ear, or give a brief break in the day. And though it’s easier to suggest than to find, I wonder if there’s anyone you know and truly trust that could help you plan your present and future finances. The care you’re describing is expensive, and can be crushing burden among all the other burdens.

      I have no “magic” words other than knowing it’s important to do some honest, vulnerable sharing about how difficult this is. The questions awkwardly and grimly remain: why do some linger so long in their dying, and others die seemingly peacefully and comfortably?

    • I understand your pain. My 88 year old Dad is the same. He has even stumped his Hospice nurses who can’t believe he still wants to eat and drink fluids in his wasting away little frame. We are along for the ride while he does this his way. Nothing textbook here. He is the kindest man you would ever know yet at times I have struggled with wishing the end would just get here and over with. It is emotionally exhausting. My comfort is the growth in my faith in God during this time (couldn’t do this without Him!) and the support from friends. Hope you find a group of friends or a support group to wrestle through this journey with you.

  7. My mom is currently 5 days without water. She is lingering. This was a helpful read and I am grateful for it. Thank you.

  8. My 74 year old mother with pancreatic cancer went into a hospice house about a month ago. The home health nurses estimated just before that she only had days left to live. Now, it’s been 25 days… she has had no food and little sips of water. We don’t know or understand how she is still with us. Everyday my family questions if we put her in hospice too early and are we starving her? I took a leave from my job out west and have been helping with her care for the last 4 months. My kids and partner have come to be with me too, living with my dad. My kids are anxious to get home. All of the stress- the not knowing, the grief, the financial stress, is so hard. Now, I must leave to go back to our life out West. I thought I would be here for the end. But it’s time for us to go back due to various commitments we need to keep. The lingering is hard. We want answers we can’t have. We feel guilt. It’s hard. This post was helpful.

    • Elizabeth:

      Sigh. Though with many differences from your experience, I too wanted to be with my Mom when she died. But, because of obligations and stress and so much more, I was not. A lingering death causes us to make or not make choices that we will always question. How can we not question? It’s not a matter of making right or wrong decisions . . . but more trying to make the best possible decisions with the limited (and often changing) information we have.

  9. I need to know if other family members can tell the parent it is ok to die. I am the caregiver, and my siblings only call once in a while and visit less. I am tired, beat, and not sure I can do this much longer,. She says she has nothing left, I did say it was ok to go, but i think she is afraid to leave me alone and needs to know that family will help me. Do I ask them to tell her it is ok to go? Why does she cling to life and suffer?

    • Cynthia:

      Thanks so much for reading and leaving this comment. You are facing such a difficult, and exhausting (exhausting beyond words) time. Though I obviously don’t know your situation, I would guess that you do need to encourage your siblings to 1) participate more in the care of their parent and 2) have honest conversations with both the parent and other siblings. Some may not be able to tell her it’s “ok to go.” But can’t each sibling find ways to give you a break and to also spend helpful time with her?

      I do hope you have some good friends to talk with. If your parent is in hospice care, tell the staff what is doing on. If in hospice care, are you using a volunteer to spend a little time with your parent so you can rest or just get out of the house for awhile?

      If your parent is nearing death, I think it’s appropriate to give reassurance of your support/presence and to find gentle, kind ways to give “permission” for them to die. In some situations we never know why they seem to “cling” to life.

      Take care . . .

  10. In September of 2017, I commented here on my dear mother’s condition, and wondered about the suffering that she was enduring, despite having wonderful caregivers at home. Mom lived for another year, her condition and the quality of her life steadily deteriorating.

    Mom passed into eternity on November 1, 2018, three weeks ago today. She was 95. And with the perspective of all that has happened in the last year, I’m not sure that my previous conclusions about the value of suffering have changed much.

    But I have observed the great love and care that both family and Mom’s caregivers extended to her, and I am very grateful for that. It gave me a deep respect for the value of hospice care and all that it entails. I knew virtually nothing about it until Mom was accepted into a hospice care program. Those individuals, Debbie, Nancy, Janet and Shirley loved my Mom as they would their own mothers. My siblings and I entrusted every aspect of caring for my Mom to them. I believe that is a high compliment.

    Suffering? A part of life, this side of eternity. As humans, the best we can do is to share in that suffering, and in the process, become more compassionate and loving. Our stay here is short. Love endures forever.

    • Bill:

      Wow. This is precious. I am humbled and thankful that you would provide an “update” here. Thanks for this sharing, and I’m so glad that Debbie, Nancy, Janet, and Shirley were part of your Mom’s team!! Take care . . .

  11. Thankyou for being honest. I am caring for someone who is lingering, and I have have both lost any faith I had, and also yelled about God allowing this suffering rather than allowing it to end, which has gone down about as well as you’d expect among people who haven’t felt the need to question their faith. I have also watched the majority of people withdraw while telling me to keep up the good work or keep my chin up. It is a hard road that we chose to tread for compassionate reasons, but yes, now it is beyond a joke, and a lot of us in the family are over it. Which is the opposite of the kind thing we honestly tried to do. It’s ridiculous.

    • Trish:

      Thanks for reading and reacting. I do try to be honest, though (when a dying person lingers), whatever I try to say that is honest or truthful or possibly helpful, still falls short of the reality you are living with. All words of encouragement seem like dust when someone we love–who is suffering, who is in pain, who is so feeble–continues to linger. And, too often, what has happened to you is what happens to many: other people withdrawing . . . no longer helping, or never helping in the first place.

      Still, I’m glad you shared about what you are doing for a loved one. I am humbled by your efforts, by your literal minute-by-minute, day-by-day sacrifices. And I hope you have noticed, with all the comments this post has “inspired,” that others also struggle as the caregiving goes on and on and on.

  12. I have just come from our of state to spend precious last moments with my beloved 64 year old brother, as he went into his final hospice stages, ( nearly 3 years!), 10 days afore Christmas. He had end stage COPD and was on oxygen and at home. He and his wife of 30+ years has moved back into her home in a very small town (600+ residents) , and he had designated her as his Medical POA. I was filled with love and appreciation that my SIL (ex) phoned me to say she would be taking a leave of absence from work to spend what she was told by the hospice powers that back be, would be days to hours with brother. I watched him, weakened as he had become since I was last there 6 months prior, fight to survive, and for 10 unmerciful days, be relinquished to no water, no food, morphine and Ativan crushed into powder form by my sister in law from training, asking with a Fentanyl patch. Now, on top of many years of very poor health, addicted to narcotic painkillers, falling asleep at the wheel and almost dying in several car wrecks, resultant two broken necks and broken back , brother had also developed several years so what hospice was calling a decubitus Ulcer. When I was there 6 months ago it was almost completely healed and when I got back just before Christmas and his passing about 2:45 am 12/26, it was the size of the Grand Canyon! Hospice was only treating it with morphine cream in his last days, and I believe that is what took my brother’s already limited life. He did not want to die, SIL was actually making his funeral arrangements while he was taking his last breaths, lingering which lasted almost 5-6 HARD days. No food, no water, he was but being turned for the sore on his buttock, and I was sickened and saddened by people coming and going, teasing him that it was just like him to pull his death right on Christmas Day! I held his hand, stroked his hair and rubbed his feet, and tried to soothe him telling him many times how much I love him and go to the light, brother, and please hello need through the light when my time comes! And that there were many loved ones waiting there to celebrate with him when he arrived! He had tears in the corners of his eyes more than one, I truly believe he was afraid to nod his head yes when I asked if he wanted to go to the hospital, it wasn’t too late. For fear her would anger my SIL, because she was so ready for him to die! So many hospital stays and treatments, etc. It was THE SINGLE MOST HORRIBLE EXPERIENCE I ever had watching him l, helplessly, suffer and linger for 7-10 days. I felt like WE killed him! Concentration camp! I plan to tackle hospice criteria very soon as I take on the health Care system, while grieving his great loss, I find hospice both cruel be and undignifying, as well as disrespectful and I do not condone it’s position in a loved ones final moments of life. I miss him!

    • Debry:

      I am truly sorry for the death of your beloved brother. And I am also sorry that you had such a difficult and frustrating (to say the least) time with the hospice that was caring for him. I encourage you to share your concerns with that hospice. One of my roles at the hospice where I work is to contact the grieving family after the death. On rare occasions, someone will share a concern with me. I pass those comments along to the “higher ups.” My hospice is far from perfect, but I have appreciated the efforts the leadership takes to address the problems and make improvements. If people don’t “complain,” helpful changes can’t be made.

      As you may see from other responses on this subject, you are not alone in the anguish of a lingering death. For family, especially for a loving sister like you, watching someone slowly die is painful at every level.

      Thank you so much for your sharing.

  13. Wow, so happy I found this thread. There are 2 living daughters (local) and 1 out of state son, who cut off a relationship with our mother. My sister lives next door to our in-home hospice mother, and I drive a minimum 1 hour each way on weekends to fill in.

    Our mother has Narcissistic Personality Disorder, and she is and has always been a difficult person. She is upset, my sister and I have a relationship finally, and are trying to work together, Her lies and manipulation are not very effective at her end of life.

    Watching her linger, and the drama she is creating is wearing us down. Ira Boyck MD (Palliative Care)says you die the way you lived. He’s so right.
    The 11 words to say to the dying, Dr Boyck shared in his book:
    Please forgive me
    I forgive you
    Thank You
    I love you

    Even though I will grieve what I never had, a loving mom, I will tell her a white lie. I practice the “religion” of kindness.

    • Gail:

      Glad you found this. And even more that you and sister are figuring out ways to work together (and to be together). I totally agree with Ira Byock’s insights. Just this week, in a grief support group I lead, I quoted from his book . . . his “four things” are helpful to say to the dying, and to the living.

  14. Larry,
    You’re a very kind man, and I truly appreciate you.

    What bothers me about our hospice firm is the “Ice Princess” we have as a case worker. Her moving on requests, like time is finite, and her lack of critical thinking, drives me batty.

    Although I understand the 9-1-1 block, and that hospice controls Medicare liability, my POA sister was told if our mother falls out of bed, or falls trying to stand (she is an idiot), then a good Samaritan should not call the FD, only hospice. The FD told me otherwise, and never heard of the program for hospice providers. I tend to believe the FD. This hospice (our 2nd one) does not impress me. I feel like I am bothering them.

    They had to call me for the apt. # during a fall, since the nurse had arrived, and they had no documented apt #. Numerous prescription wrong apt drop offs, lead me to a call, to document the apt #, and that didn’t even work. These people are lazy, uncaring, and not professional. The nursing staff is great, the admin and owner are not.

    I really don’t like the discontinuing of drugs, and feel that is active euthanasia, not passive, although I am a firm believe in patient driven life ending decisions. As this experience is unfolding, I am less pro-hospice. Maybe it is the firm, or the US way of doing hospice.

    • Gail:

      Sorry to hear about all these frustrations. While it sounds like you have real concerns about this hospice, I would suggest asking for some kind of a family/staff meeting. Have the key people (case manager RN and social worker) and you and your sister sit down together and try to make sure everyone is “on the same page” with medications, procedures, etc. The hospice should know that your fire department is giving different messages. As I understand it (though every hospice and where a hospice is located may be different), hospice should be called first instead of 9-1-1 and/or first responders.

      • Larry,
        I truly appreciate your informative response. The case worker is an LVN, the “Ice Princess”. She lacks problem solving skills, and quite frankly, I went from neutral, to she rose to the height of her incompetency.

        Thanks for the 9-1-1 is most likely a Medicare contractual thing. It could very likely the be, the FD personnel I spoke with, has the fault of not saying “I don’t know, but I will find out, and get back to you”. It is so prevalent in today’s society.

        The owner and I aren’t on warm terms, because I am a very thorough gal, who has critical thinking skills. They like sheeples. They disdain my phone calls. I ask things like policy vs. law, for example.

        When my time comes, I want the “off button”. Lingering in a bed (9 mos for our mother), no wheelchair walks outside, no enjoying the sun, the moon, and nature, is not living. We need to rethink hospice.

        • Gail:

          Though I obviously don’t know any of the people or details in your situation, I do lean toward the “squeaky wheel” choice of communication. If you have concerns, even though you and the owner aren’t “on warm terms,” advocating for what is needed is important.

          And about needing to “rethink hospice,” well, that’s a HUGE issue! Any serious conversation about hospice’s good and bad sides obviously overlaps with how our culture deals with, or doesn’t deal with, dying and death. We generally avoid, ignore, or sugarcoat those “D” words.

  15. hi
    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.

    • Ruby:

      Thanks for adding to this conversation. So sorry to learn about your father, but also am glad you are able to sit and talk with him. And I think your concerns are correct: if only people would keep “their opinions to themselves.” Take care.

  16. My 86 year old mother went into hospice at a nursing home a couple days ago. She has been chronically ill for at least 20 years. Eighteen years ago she was diagnosed with 4th stage cancer and I moved her into my home to care for her for nearly 5 years and she survived but had long term side effects. She wanted her life back again so I moved her into a handicap apartment as she couldn’t walk or even stand. I spent years worrying and calling to check on her and made many emergency visits when she fell or was sick, etc

    One year and a half ago she got the flu and almost died after almost dying numerous times over the years from pneumonia, mini stroke, COPD, heart failure, etc, etc. Oh, and she has severe Rheumatoid Arthritis and joint dislocation in all fingers and the joints replaced in all toes. So…..the flu just about did her in. I closed down her apartment and put her in a very highly rated nursing home.

    I’m over it. I try but I now am lacking in empathy and compassion

    She is in the care of hospice and still fighting for her life. Now i am just exasperated and irritable. And it doesn’t help that she was a nasty mom to me when i was little either. I know that is bad of me to say that but i do find myself thinking those angry thoughts all the time. This whole thing is cruel and way overdo for closure. God help me.

    • Kim:

      Whew. Nothing I can say will truly matter. I am profoundly humbled by how much effort you have made to support your mother.

      Though there’s never any guarantee that you would “connect” with any of the hospice staff, I would still encourage you to share some of your anger and anguish with the social worker or chaplain. You have, and will continue to, go through a LOT. I hope, whether it’s others in the family or close friends (and maybe the hospice staff, grief counselor, or clergy, or . . .) that you will have some chances to talk to others. Caretaking is one of the most demanding jobs. It can have many rewards. It can also wreck nearly every aspect of our lives. Take care . . .

  17. Lingering…tick tock, tick tock.

    Weeks become months, months become years, years become decades.

    Waiting… tick tock, tick tock.

    Waiting for my 98 year old mother to die. Riddled with end stage dementia, incontinent and wheelchair bound, mom is trapped in a body with a beating heart but a brain that doesn’t work. Heartbreaking.

    Lingering…tick tock, tick tock.

    Waiting…tick tock, tick tock.

    God, please have mercy upon us, take my mom peacefully into your presence tonight.
    I have been a good son all these years but I am so very, very tired. Amen

    Tick tock tick tock, tick tock tick tock.

    • Hans:

      Whew. So sorry (such inadequate words) for your waiting-waiting. I hope you have a few friends or family that can offer a tiny amount of support (allowing you to take a walk or grocery shop or let you shout or . . .) for you during this immense effort of supporting your mother.

  18. 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.
    Life, paused.

    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.

    • Anna:

      While I’m glad this post (and its many, many comments) has validated your and your family’s feelings . . . how impossibly difficult this time must be for all of you.

      I hope you make it through this moment, this hour, this day as you support him. Though the many comments on this post demonstrate that you are not alone, there is hardly anything–whether my words, or someone else’s experiences–that will make much of a difference. You describe perfectly the anguish felt when a loved one lingers: “… torn between readiness for his nightmare to end, and dreading the finality of his final breath.”

      With humility, Anna, I thank you for sharing.

  19. Hi Larry
    after I had posted on 6th June I think it was, my died passed on exactly a week later on the 13th June. What I have realised now:

    1. This lingering is perhaps for us to prepare ourselves for the eventual death of our loved one. my dad was my soulmate and there was not a day in my 44 years that I had not spoken to him. Not coming home to him every day after work was an incredible traumatic experience. Seeing him in hospital gave me time to process that he will not be coming home again.
    2. The anger I had sometimes felt in that 40 days of him lingering in hospital was perhaps the higher power’s way for me to let go. After all, we can let go of things we don’t care much for easily than something we have an attachment to? I would get really irritated of having life interrupted as our whole lives revolved around the hospital visits and family visits. It was exhausting. I was angry a lot of the time. Angry at my dad for disrupting our lives. In hindsight it helped me abit more in coming to terms that he would never leave the hospital.

    My family and I are now trying to find our new normal since the person so central to our lives for the last 40 years is gone. My advice to people with loved ones just hanging on……don’t look for reasons why, just appreciate that the higher power has seen fit to give you a little bit more time with them. Spend time with them. Talk to them. I am so glad that I spoke to my dad whilst he was in his coma. I don’t have regret. I have done all I could for him and in his last days made sure he was comfortable and well taken care off , not in pain and most importantly ensured that he died in the dignified manner as he lived.

    • Ruby:

      Wow! Thanks for this follow-up. My continued sympathies as you grieve your father’s death . . . and I humbly offer encouragement as you and your family “find our new normal.”

      Truly, I am grateful for you letting me know what has happened since early June. Take care!!

  20. My mother in law began to require caregiving 6 1/2 years ago which my husband and I provided. A year ago we found cancer, which she chose not to treat. The doctor said it was advanced and gave her a few months, maybe a year to live. We brought in hospice and live in caregivers but she continues to function, no end in sight. Hospice may remove her from their service. And our lives are are hold.

    I am so angry and resentful that I often cannot sleep. I am losing compassion, am losing patience and am consumed with guilt. She is living a half life, sleeping 14 hours a day, eating little, not moving much, just sitting, sitting, sitting. And we are stuck. We retired recently but cannot pursue any of our dreams that we have worked so very hard for. The hospice doctor now says she may live for years.

    Why is this happening? When will this ever end? Every day I pray for her release and for our lives back. It is torture to watch this once vibrant woman merely exist through her days. And it is hell to be burdened with her care. I feel selfish for even writing that, but it is true. I want this over and there is no end in sight. No end. Lingering does not begin to describe this situation.

    • Mary:

      You are right. Lingering does “not begin to describe this situation.” I am so sorry. And I’m not gonna give you unasked-for advice or a sappy platitude or tell you it will all get better. I guess I hope that writing about this anguish helped you a tiny bit. If you read other comments “below” yours, you will realize–for what it’s worth–that you are far from alone. Sometimes deaths take forever and then longer.

      Truly, I thank you for writing this and sharing your honest, anguished feelings.

  21. Larry,

    Just an update since I last wrote to you on November 19, 2019.

    My mother in law, who has endometrial cancer, is still alive and hospice does not know why. She is cycling, has periods of quick decline, then periods of rebounding. The level of care required is massive and yet she lives on. We are exhausted, demoralized, depleted and praying for an end, but there is no end in sight. Seven years now of caregiving.


    • Mary:

      Not an update I would hope for. So sorry for you and your family . . . and how inadequate my “sorry” is.

      But, thank you for letting me know. Sigh.

  22. Thank you for this post. It’s a comfort, as I’m sitting by my mother’s bed in hospice, to just find that someone out there understands. And that the usual pat answers aren’t enough. The number of comments here suggest that this post is tapping into something important, an unmet conversational need.

    And yeah. I’m here because I dropped my life and flew from California to the East Coast to be with my mom when she had “days” left. But she clings on.

    If there was any joy in it at all for her, anything positive at all, I’d appreciate her being granted some extra time. But no such luck. Mostly, she sleeps, since her energy is gone – but every time she wakes up, she’s upset. She doesn’t seem to be in much physical pain, thankfully, but she is in very deep emotional pain. She cries about the son she lost, the mother she lost. She’s adamant that she has somewhere to be and keeps trying to lift herself out of the bed, an effort her starving body doesn’t have the strength for. She asks me to help her get up, tells me “I need to get out of here,” and all I can do is soothe her back down until she drifts off to sleep again. She’s frustrated that I’m not helping her get up. I’m frustrated with this repeated, pointless conversation. She was a depressed person in life, and I guess I’d hoped for some kind of deathbed peace for her – instead, the sadness and agitation just seems to be amplified.

    At this point, there’s nothing in this experience for either of us but anguish. I’m starting to have this reflexive dread in the pit of my stomach every time she stirs because it heralds the “don’t get up” cycle. I find myself wanting hospice to give her more and more drugs so that she will stay asleep. And then I feel like a monster for wanting that.

    Meanwhile, I have a plane ticket to go home in 3 days – the absolute latest the doctors said she could last. At this rate, though, she’ll still be here, clinging. She is having what the nurses delicately call a “slow transition.” And I can’t pause my life any longer. I’ve maxed out my vacation days at work. My children back home need me, my husband is overwhelmed and anxious trying to meet all the household needs and do his demanding job at the same time. So it is likely that I will not be here for her last breath despite my best intentions, and I will probably carry that guilt forever. But my husband and children need me.

    I can’t find a greater purpose in all this. It’s just sad and hard and grim. If my dog’s body was shutting down and he was in distress every time he opened his eyes, I’d be an abusive pet owner to let him keep going like that. It is the accepted thing that we give our pets the love and kindness to speed their passage once their bodies are broken and their pain is unbearable and there is no hope of recovery. We do not extend the same generosity to our parents.

    • Sally:

      First and foremost, thanks for sharing these thoughts. I agree with you: this post on “lingering death” has tapped into something important. And, rightly so, this experience with a dying loved one is painful for many. Many have read this and shared about this difficult time of waiting, waiting, waiting. I suspect there are others who have also read it, didn’t leave a comment, but at least learned they were not alone in the anguish of caring for someone they loved who kept hanging on.

      You have some tough decisions, Sally. I have no advice. I have a story, which I’ve written about in various places. For days and days, I stayed by my mother’s side as she was dying. To be polite, they were grim, difficult days. Maybe unlike you, I had the advantage of a sister nearby who could also spend time with Mom. But being with Mom was sometimes hard for my sister and I choose to extend my stay another day or so because she (my sister) was struggling with the bedside vigil. But I did finally leave . . . and that evening, not long after my three-hour drive home, I got the call that Mom had died. Alone. Do I have guilt (even now, seven years later)? Some. Guilt, like grief, can be a nasty, clever companion. But I also knew there wasn’t much I could do. And I had a lifetime of mostly wonderful memories with Mom. I wish I had been there when she died. But even more, I was glad I had been with her throughout our living as son and mother over the years/decades.

      Even with a “perfect death” the hooligans of guilt, blame, regrets, and second-guesses will stalk you. We are only human, after all. You have given precious, essential time to your Mom. I have no idea what decision you will make. I’m betting though, that it will be the right one.

    • Sally’s post echoes my situation. My father is currently on day 10 or 11 since he last had food or water, unresponsive and unable to swallow. He’s not going to get better, given end stage Parkinson’s.

      More than a week ago he was on a downward track and his doctor said it was time to fly home and say goodbyes. We got him into hospice, the doctors there said it was hours left… and then he just plateaued the next day and has lain there ever since, huffing and puffing and consuming his own body until he is a skeleton. We just wait and watch, trying not to have home life and work collapse. My return flight is coming up, which I put way into the future expecting plenty of time for funeral and necessary tasks, but he’s still going, not even showing signs of imminent death.

      Do I wait another week? 2? Go home and return for the funeral? It seems cruel to him to just watch him waste away like that.

      • Craig:

        Thanks for adding to these comments. You have questions I can’t and shouldn’t answer. However! The best social worker I worked with in hospice said, about decisions, “Do what you can live with.” That’s both helpful and not helpful. It’s not helpful, because each individual has to make a “guess” as to what is best (or least worst) for them. No one but you can make that guess. But it is also helpful because the social worker’s advice is an invitation to choose . . . based on your real needs, your loved one’s situation, and knowing that every choice carries a mix of rights/wrongs, hopes/hurts.

        I am so sorry you are going through this impossible time.

        Here is a link to where I wrote about the social worker’s comment: https://hospice-matters.com/let-me-not-give-you-some-advice/#more-4031

        By the way, I sent you an email but it was returned as an “unknown” address. Sorry . . .

        • Thanks, Larry. I decided to stay, and when I got to the hospice that morning it was obvious the end was about to come quickly. Glad to be there at the bedside as he passed.

          • Craig:

            Thanks for letting me know. In the truest, kindest meaning of this simple phrase . . . take care!

  23. I sit here in the late hours too exhausted and worried to sleep until I pass out and sleep like a rock ! My mom just a few feet away making all kinds of noises that keep me worried. She was given 6 months to live 3 years ago after being diagnosed with her 3rd cancer. Then 7 weeks ago she was told she had 1 week to live as the doctors diagnosed her 4th cancer ! Talk about hanging on, and what for ? I watch her grow weaker and less like herself daily. I am exhausted and stretched in every direction. As I read all of the previous stories, I find similarities of this story in parts of all of what people have posted. She fights the inevitable by self talk but her body is trying to tell her to listen to its wisdom. I got signed up for this job which I am flying by the seat of my pants with beyond minimal help. My brother turned his back on mom 2 weeks ago and my other
    2 brothers have already passed away. I am the only girl. The one expected to “ hang in there “. People keep rooting me on but no one can help because mom doesn’t allow anyone but me and one 3 hour per day, 5 days per week hired help which I begged her for. Why is she making her world so small. I could go on and on but what is the point. Gotta say though this experience has made me kind of worried for my time of dying and leaves me hoping I just go quickly because the system that exists for support is not a very well oiled machine . I wish all of you peace to some degree in this journey. I look forward to returning to the land of the living and wonder who I will be once I do. This definitely does a job on one’s mind . Blessings

    • Tammi:

      First, thanks for sharing. Second, I’m glad you took a little time to read some of the other comments . . . you are not alone.

      But, sigh, third, what a difficult time you are going through. As I have often said, truthfully and sadly, there are no magic words or actions to make the caring for your mother any better. Nonetheless, I will offer one inadequate encouragement. Even though your mother is resistant, since you have become the parent to your parent, it may be worth the effort to demand that you have more hired help in the caregiving. But it’s also possible you/she can’t afford it. Or she will so loudly battle against any added support that it’s not worth the “war” to try to convince her.

      Without a doubt, you are alone in much of this effort. You didn’t say if your mother had hospice care, but if so, I sure hope you share your frustrations with the team.

      Again, thanks for sharing.

      • Hi Larry,
        Yes, she has hospice- that is what I was referring to as the NOT a well oiled machine ! Just this morning my mom is in bed and I hear weird noises so I came back to her bedroom, she’s laying in her back vomiting and choaking on it and too weak to move ! It is black. As I stated , I am flying by the seat of my pants. Got the situation sort of stable, called Hospice, still have not heard back from them. It has been 30 minutes ! ! ! She went right back to sleep. Honestly, where is the book that tells all of what can happen and what to do ? Seems Hospice would have given me one .

        • Tammi:

          Thanks for the follow-up. While there are some books, there is likely no book for everything. Hospice RN Barbara Karnes has some excellent resources at her website, but even she doesn’t cover “everything.” Her Gone From My Sight (sometimes called The Little Blue Book) is a great and short read explaining what happens to the patient’s body in the final days and hours before death. But, again, that likely won’t help you.

          I wish the hospice helping you gave you more support and confidence.

  24. Hello
    My mom had a stroke 4 years ago her left side does not move at all. She has been living with nurses and care. 6 months ago she was having trouble breathing taken to the hospital and attached to a ventilator. My only brother and her has super connection with each other it is almost she looks for a permission to leave her body. We tried to talk to him several times to let her go but he fight and make her fight for her life. Keeping her in 24/7 oxygen food pile urine pipe etc. He is having hard time letting her go gracefully. Everytime when she has some strength she says let me go he get upset and tell her you need to live another two years. She is 93 already and we feel she needs to go. Very hard to see her like that. Her hands and feet our swelled up shd cant talk much and in pain. Don’t know what to do and how do I find peace.

    • Anjali:

      Thanks for taking the time, and having the personal strength, to share this. When a loved one’s death “lingers,” it can push and pull families in so many different ways. I’m sorry to learn about your “struggle” with your brother as he deals with his (and your) mother’s dying. I wonder if having a family meeting with the hospice social worker and/or chaplain might be helpful?

      As I say too often, there are no easy answers with this. Again, I so appreciate your willingness to share these tender words.

  25. I just wanted to say ‘thank you’ for both the post itself and the comments it has generated. I found it today by accident and it has helped me feel less overwhelmed and alone. Once again, thank you.

    • Elizabeth:

      You are welcome. While many of the comments are “painful,” I also know they can be helpful.

      Take care.

  26. I came upon this post today and have read through every comment. First let me say how extraordinary it is that you care to respond to each person. You are a kind person. I honestly don’t know if I am relieved by the sense that I am obviously not alone here or frightened that it is more common that I believed it to be, left wondering how long this can go on. But I can see that the opportunity you have given to express these overwhelming feelings here is therapeutic and possibly helpful to someone else, so I thank you and will seize the opportunity.

    Through a 9 year battle with prostate cancer I have watched the man I love and do life with slowly disappear. I have now sat vigil for 6 months with him in in-home hospice. For five years prior I struggled to support us as the disease took away his will to do anything but sit and read or sleep. I entered into the “hospice phase” already exhausted.

    I have endured the emotional whiplash of the hospice nurse telling me 5 months ago that, “he has a week to live”, to a week later saying, “I’m surprised he’s still here”, to two months later, “he appears to be transitioning and probably has weeks, maybe months”, to that exact same thing again about a month ago. A month before that the hospice doctor, who was reviewing records and nurse notes said he probably had 6-12 months to live. Why do they say these things when they clearly don’t know? Surely they know the torment it brings.

    He would have been bedridden for the past 5 months if not for the Hoyer lift I use to get him from bed to Broda chair each day. He is completely dependent upon me, and I am completely exhausted in every possible way–physically, emotionally, spiritually. The combination of Covid and some very selfish family members has left me completely alone in this. I cannot leave the house, and no one comes to help except the 20 minute a week hospice nurse. I have now been completely out of work and without any income for 8 months, and the financial strain itself is unbearable.

    The deep love that I have for this man is getting buried under the exhaustion and the horrible things I think and feel quite often. I fear they will never go away and end up overshadowing the love. I used to be a pretty strong, stable person. I am now filled with fear, guilt, shame, anger and dread. My mental health is gone. Most of the anger and resentment is directed at the people who “cheer me on” from the sidelines, devoid of empathy, and heaping expectations on me as I single-handedly care for the person they too are supposed to love. But I also find myself getting angry with him when he eats his two meals a day normally and when he has active, normal phone conversations with other people. He barely speaks a word to me most days. In the decade of this disease he has been very content to have me take care of him and everything else, and this level of caregiving seems to be the truest extreme of that. It is very hard not to feel some resentment, even though in my heart I know it’s the disease. This is not who I used to be, and I hate it.

    The not knowing is consuming. Will his debility and suffering increase even more? I have a very high empathy meter and I feel all of his suffering innately too. I am a fixer and I lay awake listening for him to need anything to make him more comfortable. I spend every moment trying to figure out what he needs. Will it be years like this as others have said? The faith I used to be so dependent upon has completely dried up alongside the new understanding of how weak I am anyway, and I wonder how much longer I can hang on.

    • Kay:

      I obviously don’t know you. And, even more obviously, I can’t begin to understand what you–and you, alone–are going through. Still, your words break my heart. As I’ve said to others, both in my responses online and in person when I worked in hospice or a church, I wish I had some “magic” words to make your situation better. Even slightly better. But I don’t. You are giving all and more . . . and there’s likely even more you will have to give. Sigh.

      I agree with you about any hospice nurse or staff saying, “Your loved one has X days/weeks/months left.” It can become cruel. I tried to avoid it with my patients. But I get it why people ask “how long” and I get it why many hospice professionals attempt some answer. Much of the time, the answer is accurate. But often enough, cruelly, it is not. Nonetheless, we keep asking. The often right, but sometimes wrong, answers keep coming.

      Under the “best” of circumstances, what you are dealing with every moment/hour/day is awful. Toss in this pandemic, and it gets so much worse.

      While my words are inadequate, I do (also inadequately) thank you for sharing about your situation with me, and with the others who may read them.

  27. April Fool’s Day and my exhausted google search led me to you wonderful people. So brave in sharing your journeys. These things tend to let the vulnerabilities shine, don’t they?

    Same boat here- exhausted. Looking for the feet, listening for the breathing- she is unresponsive but just keeps chugging along while dementia eats away at all of us.

    Thank you all for the kinship.

    • Heidi:

      Even on an April Fool’s day, I’m glad that you happened on this part of my site. If any of what you read from the many others who have posted here helped you even a tiny bit, I truly am grateful for that. And I suspect some of the others–who have lived through the anguish you are dealing with every day–would also be glad their honest words mattered to you.

      Take care.

  28. I came across this site when I Googled multiple rallies for a dying parent. I’ve cared for my Mum, who is 80, for ten years now as she’s had a lung tumour, severe COPD, emphysema, then a heart attack leading to heart failure, stage IV kidney failure, Guillaine Barre infection which left her with permanent nerve damage…..the list goes on.

    She fell 3 months ago, which led to a decline in both health and mobility. After being very ill for a few weeks, though, she rallied. Then 6 weeks ago she went downhill again and needed to be hoisted everywhere as she could no longer walk. I went to sleep at her house to take care of her in the night. But then she rallied again and I went home. Then 10 days ago she went severely downhill and the Doctor gave her a week to live – she wasn’t eating, barely drinking, couldn’t speak and her hands were swollen and purple – so I went back to sleeping at her house. Then 5 days ago she rallied so much I thought “this is definitely the rally before death” and expected her to pass, but she has just kept the rally going. Her hands are back to being a normal colour, she is chatty, eating again and lucid most of the time. The way she looked today she could still be with us next year!

    I have already spent a decade taking care of her, including 15 months of the pandemic without a single day off or any help as she was shielding, and I’ve had enough. I am at the end of my physical, mental and emotional resources. I just want her to die so I can rest and get my life back. That’s an awful thing to say, but it is the truth. I am chronically ill myself and simply don’t have the energy to sleep on her couch indefinitely. We didn’t have a good relationship. She is demanding and moody and I feel like she’s deliberately not dying to keep controlling me. My life has been on hold for years and I simply don’t want to be her carer any more.

    I identify so much with Kay’s comments above. I am angry at my Mum for not dying. Of course I don’t say that to anyone because they would think I was an awful person, but it’s been so comforting to read other people’s comments on here and to know I’m not alone in thinking and feeling the way I do. I don’t know how much longer I can keep going.

    • Joanne:

      With absolutely no hint of humor from me, you are describing a situation that is like “it can’t get any worse … and then it does.” Or a perverse variation of Murphey’s Law where the last bad thing to happen seems quaint compared to the new and next bad thing happening.


      I am so sorry for what you are going through. I am glad, though my “glad” hardly matters, that reading some of the comments from others made you feel a little less alone. I deeply appreciate your sharing of this extraordinarily difficult journey. As I have said in other comments to those supporting family members that keep lingering, I have no magic words for you . . . but I do have a profound respect for your unimaginable sacrifices.

  29. I am so grateful I found this thread. Thank you for writing this and keeping it going. Reading the comments on here has really helped me. I was really beginning to think I was the only monster that could wish their mother would just let go.
    My mother was diagnosed with terminal cancer 3 months ago.
    Since then she has been in and out of hospital. It’s been one thing after another. I have put my life on hold to come to visit her in her nursing home 5 days out of 7 a week.. My siblings – one visitors once a week sometimes and the other came for a week and has done their duty. My mother was a terrible mother. She didn’t really do any mothering. She blamed her kids for her life and didn’t nurture or look after us properly. She didn’t abuse us but at best neglected us growing up.
    I have been by her bedside for 6 hours a day for weeks now. She won’t let go. She is restless and definitely not peaceful. She is all skin and bone now and isn’t drinking or eating. The nurses are amazed that she is still getting up and trying to walk around. I am still trying to do a full time job and I spend my days working and going to visit her. After long visits when I get up to leave she begs me to stay for just another 10 mins. This can go on for hours. I am desperate. I feel guilty for wanting this awful suffering for her and for me to JUST END!!!!!!

    • Hello . . . and I am also you found my website. Obviously this subject–lingering death–touches many lives. No one, including you, who has shared their guilts and doubts and anger is a monster. Caring for a loved one that lingers and lingers is less about caregiving and more about the grind of one day following another. Can there be beautiful moments? Sure. Can, later after the death, someone look back and see “good” things? Sure. But it can wound the soul and completely rearrange your life.

      Let me offer a few futile suggestions. I am not sure if your mother is on hospice care . . . is she?

      + If she is, or if you can place her on service, take advantage of everyone (including any volunteers) who can visit. As we pull out of this pandemic, there may be more options for more visits from nurses, social workers, chaplains, etc.

      + Is it worth “confronting” your siblings to provide more support to her?

      + For you to give yourself a break, find out (maybe you already know) when the staff shift changes occur. Go visit at some point (a half hour, an hour?) before the change and then use that as a legitimate excuse to leave.

      + Regardless, I would encourage you to find any way to limit your time. Visit your Mom before a doctor’s appointment (gotta go now) or when you do grocery shopping (have to get my chores done).

      + If you can visit her less, always be clear with when you will return: I won’t see you tomorrow, but will be in the next day at 9. Be there at 9. Keep the promise. But make a promise to yourself . . . to limit your precious, exhausted time.

      Advice from others (like me!) is often meaningless. All of us are a bundle of unique obligations, personal histories, hidden guilt, and a mess of other feelings that are part of a daily/hourly struggle.

      Again, I am glad you found others like you. Thanks for sharing your pain and your honesty.

  30. Larry
    Thank you for taking the time to reply to me.
    I’m still here by her side. Spending most of the day here now as the nurses tell me we should be looking at 2-3 days at the most.
    She is a bag of bones – probably no more than 50 pounds, cannot do anything for herself now and can’t wait but still tries to get out of bed when she is lucid.
    This is not a life. I can’t help but think we wouldn’t allow our pets to suffer this kind of pain, suffering and indignity.
    Reading and re-reading this website is what’s keeping me going and has helped me enormously. I thank you from the bottom of my heart for writing it and to everyone who has contributed.
    Love to you all.

    • Dear Not Guilty:

      Sorry, had to add the NOT. You are not Guilty, in name, or in thought, or in action.

      I am glad my words, and the words of the many who have commented on my website, have provided you with a little help.

      Not much else to say to you, other than to encourage you to change your “name” and hope the nurses are correct about the predicted days for your mother’s life and death.

  31. Thank you Larry.

    I will change my name from Guilty to Exhausted because that is how I feel. I have nothing more to give.

    My mother is still here. She is the talk of the nursing home. They can’t understand how she is still alive. She had been unconscious since Sat. In the last week she has had her last rites said by the Minster 3 times. Still she lingers.
    Yesterday she rallied and I saw and talked to her for 6 hours. She was lucid for most of it.
    I spoke gently to her – told her we will be okay and she has nothing to worry about. I showed her videos of her grandkids saying good bye and my siblings who can’t (won’t) come saying goodbye.

    I repeated what the Minster said about following Jesus and his light and joining God in heaven with her dear mother and she simply said “No”.

    I’m at the end of my reserves. I am emotionally and physically exhausted. My mental health is shot. This lingering is “killing” me.

    My husband is desperate for me to come home. My son keeps asking if I’m ever coming home. My work is suffering badly. I have postponed so many life and work commitments and it’s becoming too hard for me to manage. I feel so stressed, exhausted and guilty for wanting to just go back to my life.

    • Dear WGNE:

      I sent you an email. Hopefully you will get it. Simply, it states: get out of Dodge.

      Thinking about you . . .

  32. Dear WGNE

    I feel for you. My Mum was given a week to live at the end of May…….and it is now July. Last weekend she survived sepsis. We gave her no antibiotics or anything to bring down her fever and within 48 hours she was asking for fish and chips for lunch! The Doctor said he’s never seen anything like the rallies my Mum has had in his entire career. She spent a week in the Hospice recently but did so well there she was sent home!

    My relationship with my step-father and his family has now totally broken down. It was precarious to start with, but having to spend so much time together in such a stressful situation has been too much. I asked if one of my two step siblings, their wives or adult children would give me 2 hours respite on a weekend by sitting with Mum……….and they all said no. None of them care that I have looked after my Mum and their Dad for 10 years already and that I, too, am chronically ill. I can’t wait for my Mum to die so that I can walk away from the forced and unhealthy relationship with my entire step family.

    As my Mum has now been dying for over 4 months I’ve had to make a decision to put my own life first. I was utterly on my knees and on the edge of a breakdown. No-one cared about me – neither my family or the professionals who offered respite care to Dad but didn’t even consider me, despite the fact I am not only Mum’s care giver but my 81 year old Dad’s too! I’ve told everyone I am only visiting 2 days a week from now on and am sticking to that unless Mum is actively dying. She has carers in 4 times a day and my Dad is there to get other help if needed. I still provide loads of help while at home (talking every day to doctors, carers, nurses, getting prescriptions, ordering equipment etc etc) but at least I get a break from the emotional stress of actually being at the house. My Mum has had her life and I deserve mine.

    • Joanne:

      As is so often the case as I read these comments . . . I have no words of comfort to match the anguish you are going through. Your situation seems miserable and with a high likelihood of more misery. I do think (for what it’s worth) your decision to visit twice a week is good. Your life does matter. And, obviously, so does your mother’s life. With two visits a week, you can (try) to be more of her daughter than a watcher and worrier and caretaker. The balance of taking care of yourself when you are caring for others is nearly impossible.

      I deeply appreciate you sharing.

  33. Oh boy. Reading these comments going back years is tough. I am going through this with my 69 y.o. husband. He had a liver transplant in 2007 due to liver cancer and Hep C. He nearly died before the transplant – a year and a half of constant care and stress – juggling full time job (he was retired); running home twice a day from my office to make sure he was still alive, etc., but there was hope for his transplant so I didn’t mind one bit. I was a tiger for him; I fought and pleaded and made a pest of myself with the transplant people. And he got his transplant. Fast forward to 2015 – they cured his Hep C with Sovaldi. Then in 2017 he was diagnosed with liver cancer again, because his Hep C cure didn’t come fast enough. He’s taken every “cure” they’ve thrown at him; starting with that evil drug Interferon in 2010. For the cancer he’s had an ablation (which caused fluid retention in his chest cavity and his lung collapsed, requiring surgery for pneumothorax – after which instead of 4 days in hospital he was 2 weeks – he had a close call), 2 bouts of targeted radiation, 2 bouts of Y-90 radiated spheres, and chemo in the form of Soraphenib – which is a horrible, disgusting, evil drug. He started on Sorafenib in March 2021 and he declined rapidly – and stopped eating at the end of April 2021. He was driving and behaving normally until May 15th. Then he noticeably started to decline even further; he went to bed on May 23, and except for 3 days in June when our daughter came to visit, he hasn’t left our bed. He got an anal abscess in late May 2021 and a fistula – and was in the hospital for sepsis in early June 2021 and was told his cancer, after 2 MRI’s and 2 CT scans, had blossomed all over his liver and it was now in his lungs. Also his pancreas has atrophied. He has 3rd stage kidney disease from the anti-rejection meds he’s been taking for 13 years. He also has COPD and emphysema and some other weird thing called “bronchiectasis.” When he got released from the hospital in June 2021, after his bout with sepsis and the fistula repair his regular liver doctors said he was terminal and he should enter hospice care at home. (His oncologist has never even bothered to call and speak to us, or to see how he is. They washed their hands of him.) I’ve always promised him, even years ago, that he would not have to go into a nursing home. He has a horror of those places, as do so many. We live in a place with no family and no friends – we moved here to lower our expenses after his transplant – and it’s been OK – we are each others best pals (which is OK until you need other people.) Our nearest dear friends are 6 hours away by car and nearest family is 2,000 miles away.

    Anyway – he entered hospice, given 1 to 4 months to live in mid June 2021, with me as his one and ONLY caregiver. Mind you, he hasn’t eaten since the end of April 2021. Literally a bite here and a bite there – never a full meal and only once a day – at most 3 or 4 bites of food day if that much. Since about June 16th he hasn’t eaten a morsel of food. He’s been drinking a very small amount until about three days ago – it’s now July 11th – so it’s been nearly a month with absolutely no food. He is hallucinating, he is restless, he is angry, he is argumentative but he cannot make himself understood because his speech is incoherent. He gets mad when I cannot understand the unintelligible words he utters. And I feel helpless, frustrated and also angry.

    His regular liver doctors have also not ONCE looked in on us to see how we are doing; how HE is doing – the man that was their patient for over 10 years. It feels like he has been abandoned by the medical profession that forced all these cancer “treatments” on him. It seems like they feel patients like him are an embarrassment; they are failures that must be swept under the rug of “hospice.” I am ambivalent about the home hospice experience. So far it is just OK. I cannot rave about the deep compassion or the wonderful experience it is. They come, so far, twice a week and they are here for 20 minutes tops. Except for the meds they have left here, I do ALL the work, take all the abuse and am expected to feel good about it. I went through exactly the same experience with my mother. But she was a good little girl and she died in 4 months, from her ovarian cancer diagnosis, to a brutal surgery, to her death – at Christmas. She too did what she was told – allowing her insides to be surgically removed and then scolded when she didn’t respond the way they expected her to and palmed off to doctors she didn’t know by the doctor she trusted for over 20 years. (And her doctor owned the hospice that she entered…which seemed odd to me, but I digress.) My husband is 10 years younger than my mother was – she was 78. She was gorgeous and in good shape; they told her because she LOOKED so good that she had a great chance at survival. Ridiculous. Her body and her organs were 78 years old. She didn’t linger; she took a fast track to death; stopped eating almost immediately, became nasty to us and to my father, and became incoherent, incontinent and a giant baby, and was finally put in a SNF – and died 3 days later – again all in 4 months from the point of her diagnosis. And honestly I wish my husband could fast track this experience, too. This misery that he is dwelling in is not something to cherish or want to remember. This is a living nightmare for both of us. But he comes from a very long lived family – his uncles, aunts and his mother living into their 90’s. He would have, too, except for the Hep C he contracted in the 1970’s, which destroyed his liver 30 years later.

    I want him to go – that sounds harsh, but he’s been through so much – so many surgeries in his life – the transplant, and many others. All the meds that he’s had to take, day in and day out for years and years. Don’t get me wrong – the transplant gave us – gave him – 13 good years. It gave him back his life and a measure of his youth. He played his bass in 3 rock bands, walked his daughter down the aisle and has held and played with his grandson. BUT now he is lingering in a miserable twilight. He can’t walk, he is bedridden, he can’t poop or pee, he won’t eat and now doesn’t want to drink, he can’t communicate, he can’t make eye contact, and he is just AGAIN expected to do what the medical people tell him to do – to take all these palliative medications that increase his hallucinations and increase his fragile hold on reality. Is this really, with all the genius of medical science, all that we are capable of doing for people at the end of a decent life? Hospice says it’s to “make the patient comfortable.” He isn’t comfortable! He’s miserable and angry and afraid. He’s in a haze of drugs; he is frightened and the only thing we can do is sedate him so that he can’t feel his fear, or worse, so that he can’t show his fear to us. It’s still with him, inside his head; he can’t escape it. I see his eyes and I know what is behind those blue eyes. Fear and anger and a feeling of being let down. And I am culpable. The medical profession is also culpable when they let down patients like my husband – he has trusted them implicitly, and done everything they’ve ever asked of him, and now…this. I could write 10 pages on how he’s been let down, in spite of the miraculous gift of a transplant. Sometimes I even think that the transplant world is a farce. Science that allows us to artificially prolong a life that, perhaps, should have ended when nature intended it to.

    But, I don’t know. I am just an ordinary woman, struggling, like so many others, with extraordinary burdens. I’m not a saint or a seer and I just know that if my beloved husband of 26 years had died a month ago of sepsis, he’d be at peace and no longer in pain, and I would be a month into my grieving process instead of, like he told his best friend of 40+ years on the phone a week ago, in a rare lucid moment, “we’re just here, dude, waiting for me to die.” How sad is that?

    • Whew.

      I read every word. Every pain. Every bit of anger. Every awful truth. And I read your “good” parts: the eventual transplant, holding a grandchild, strolling with a daughter down the aisle. They are part of the truth too. But I truly, truly, truly can’t even begin to imagine the daily anguish you feel.

      As I write in so many of my responses (and just wrote one to another person a few moments ago), I have no words of real comfort. What cheerleading could I do? Since you were a loving and squeaky wheel for the transplant, it may be something to also do with hospice. In my prior work with hospice, I know each one is different. But they may have resources they haven’t mentioned to you yet. Like extra support. Like respite. Like volunteers coming to visit to give you a tiny break. And they do need to hear (and hear again) about his hallucinations. Are there any alternative drugs that would still provide palliative care but reduce the hallucinations? But all of what I just mentioned is meager, mostly useless advice.

      I am glad you wrote. I so wish I had magic words to ease your burdens and to hasten your loving husband’s death. I don’t.

      • Hi Larry – thank you for this article – for sharing your story and for letting those of us who are grappling with this horror to vent a little. It actually means a lot. Just having a venue and a sympathetic ear is helpful. Getting it out, by whatever means, is helpful.

        Thank you.

    • I struggle with deciding to treat the new complication or just to ignore it. I also want to do what is right for my loved one, but it is hard to get honesty from most medical professionals. You just end up prolonging the inevitable, no one but pharma wins.

      • Lori:

        Often doing the “right thing” is easy. But, especially when caring for a dying loved one, it can be excruciatingly difficult. I hope you have one or two trusted friends and/or family members to talk with as you decide to treat/not treat a new complication. If you do, while they can’t help you make a decision, it can be important to talk aloud your options, fear, and hopes as you determine what is best.

        I so appreciate you adding your thoughts to these comments.

  34. I was shocked to discover this as I’m fruitlessly searching for someone on the internet to tell me that it’s almost over. I need someone to mean that. We’re on day 6 of no food, no water, day 3 of no fluid output, day 4 of no bowel movement, day 3 of no response or movement. Just the rhythmic breathing. That rhythmic breathing. I have guilt that it’s driving me mad. Why? Why is his breathing so consistent, yet rattling. I’m thankful for once that my mom can’t hear enough, even with her hearing aids. I don’t know if I’ll ever get this rhythmic breathing out of my mind.
    How long can this go on? How long can a hospice nurse tell me they won’t see us again because her next shift is day after tomorrow, only to see her day after tomorrow. We said everything we had to say days ago. To him, to each other. We’ve perfected every detail of the funeral, of the obituary. We’ve even revised and edited. We’re tired of each other’s company but I can’t leave. Mom doesn’t want to be alone. All I want is to be alone. But that breathing.

    • Jen:

      Oh, how I wish (with my magic wand in hand) I could tell you when the dying will become death. I cannot. I also can’t answer the question of “how long?” I know the sound of breathing you are referring to . . . though none of my examples would come close to what you are painfully, awfully, unfairly hearing, hearing, hearing. For what it’s worth (not much, probably), I have known some situations where the “silence” of the dying person–the loved one–is what drives the caregiver nearly mad. The endless harsh breathing or the stilted silence all can make us literally and figuratively scream.

      I am so sorry you are going through this time. But I am also glad you were able to share your words on my site.

  35. Like many others, I’ve found this post while Google’ing “How long can a dying person linger?” Which I feel horrible even typing out that question. My mother is dying of lung cancer. My father and I are caring for her here at home, and are both thinking how long she can go on like this? How much more does she have to suffer? It’s unbelievably hard to watch your mother wilt away to nothing, yet still linger. So you start searching for answers. How long can someone go without food? How long can someone go without water? How long? How long? That questions goes through my mind a million different times a million different ways. I just want to Thank each and everyone for sharing their stories. It’s comforting to know we are not alone in our quest for answers.

    • Megan:

      If only there were easy answers to your questions. And, indeed, there often are. We can find reliable resources that tell us the average length of how long someone can go without food or water. We can identify “signs” of death nearing with the breath slowing or speeding up, and certain parts of the body shading in different colors. But so often, with the particular person we are caring for, there is no average and the signs seem more confusing that clarifying. I am so sorry you and your father are dealing with this, day after day.

      I am glad you found this site, and–in some small, trivial way–you know you are not alone.

      Thanks for sharing your comments.

      • Larry, thanks for this post. I’m sitting by mom’s bed in hospice and although it’s only been 3 days, I’m so worried after reading all of these comments. She’s still drinking and eating a tiny bit, and hallucinating a lot . And she has a lot of pain. but This morning when I came in she was sitting up in her bed brushing her teeth! But yesterday she was completely out.

        I am here 13 hours each day and i’ll keep coming back bc my brother who is out of state apparently sees no need to come.
        I’m all she’s got.

        I don’t think I can bear this for weeks and weeks ! I feel selfish saying so, but it really is so tough.

        • Jen:

          Thanks for taking the time to share your thoughts. First and truly important, don’t be overly overwhelmed by the comments at this site about “lingering deaths.” While a loved one who somehow keeps living day after day is a huge burden on a caregiver, the statistics indicate that only about 14% of hospice patients live past six months.


          Caring for a dying loved one is tough. Whether for a few days or many months, it is demanding, exhausting, and dominates your thoughts and schedule. I encourage you to use all of the resources of the hospice staff helping you. And can you find any other help, like friends or other family? If your brother is unwilling or unable, is there anyone else? Unless your brother doesn’t want to hear anything about your mother, I wonder if it would help him understand what’s going on if you called, texted, or emailed about each day’s experiences? That will keep him in the loop of information, and also remind him that supporting her is an immense effort.

          Any and all of my advice is likely useless. I simply am glad you reached out. Try, try, try to find ways to take care of your self as you care for your mother.

  36. Just an update on my Mom, who has been bedridden since March, incontinent, unable to feed herself and who we care for at home with the help of a care agency.

    We were told in May she had about a week to live. She hadn’t eaten for 3 weeks, only having sips of water, agitated, hands were purple, skin and bone, sleeping a lot. Then one day I offered her a few spoons of custard……and she started eating again.

    In July she got sepsis. We didn’t give her antibiotics. She survived, despite being in end stage kidney failure, plus heart failure and with end stage lung disease.

    In September she got a chest infection. She has severe COPD and emphysema, so we thought that would kill her. We didn’t give her antibiotics. She’s still with us. The doctor is simply gobsmacked.

    It’s been 7 months now. She eats, poops and keeps breathing. She’s been hallucinating for months. She had a visit from her dead sister a fortnight ago and I thought “thank God this is it!” but she’s still with us. No signs of active dying.

    She says she’s had enough, but then asks for cream cakes.

    There are days the stress is so huge I want to suffocate her with a pillow. I won’t, because I couldn’t live with myself, but it crosses my mind and my Dad has said the same thing. I’ve tried encouraging her to cross over, as all her beloved sisters & brothers and her 2 best friends are all dead, and I say how lovely it would be to see them again……….but she continues to endlessly linger.

    I’m now clinically depressed and have lost nearly a whole year of my life (and the previous 10 years caring for her and my Dad who is 82). I’m still trapped. I cry every day. My Dad is also depressed.

    We wouldn’t put an animal through what she’s going through. Even the nurses who visit have said it’s cruel for her to live like this.

    • Joanne:

      On one hand, thanks for the update. But, oh, that other hand. With the descriptions you give, I have no words that are sufficient to respond. I truly can’t imagine what you continue (and continue) to go through.

    • I’m not sure how I found this site but I’m so grateful. Reading what others are going through or have gone through gives me some sort of comfort. My husband is dying from stage IV prostate cancer. He wanted to be home with me so I’ve respected his wishes. He is currently laying in our living room in a hospice bed either staring into nothingness or grabbing the bedrail. He hasn’t eaten in almost two weeks and barely drinks. It’s just the two of us and I feel like I’m supposed to stand watch over his bed even though he cannot communicate. He told me earlier he was offered a job on a WWII bomber. He’s not that old. Then he blurts out other random thoughts. I’ve learned to ignore them. My heart is broken. He yelled out, “I can’t leave”one day last week and followed something around thr ceiling. No one can prepare a person for this type of situation. I have friends and family who text me daily. I cancelled my dental appt last week because I was scared to leave him with someone else. I feel like this is cruel punishment but I don’t know who is suffering me, him or both of us. I feel incredibly selfish as I don’t know what I’m supposed to do. I give him his meds, change him, etc, but other than that I’m useless. It’s like a nightmare I can’t wake up from. I’ve told him he’s free to go with God. He worries about me so I figure let him know I’ll be fine. A few night so his fever was 104.5 during the nigjt, now it’s holding at 97 which is normal for him. One family member who lives out of state says I should stand over the bed or sit in the chair right next to him 24/7. The hospice nurse said sometimes when people can’t help they say things like that. I feel like a terrible wife just leaving the room. Some days I go two or three days without showering. I’m a clean freak so this is not normal for me. Sometimes I feel like I’m being punished for doing something wrong in my life. I pray all day and my faith never waivers. Perhaps Satan wants to get into my head as in weak right now. I’m sorry others have to endure this. Honestly I don’t know if my husband is suffering. I just don’t know.

      • Gail: I am glad you found this site, and that through others’ responses you know you are not alone as you care for your husband. Except, of course, that knowledge is a tiny “plus” compared to the daily pressure and weariness that overwhelms you. As I say to so many of the wonderful, exhausted caregivers who have left comments, I wish I had some “magic” words to explain this, or some perfect answers to the awful questions of Why him? and Why me? and When will this be over? and What can I do to make this better?

        But I don’t.

        One suggestion I would make (which for all kinds of reasons may be impossible for you) is to try to take some time away. Does your hospice have volunteers that could sit with your husband? Do you have nearby friends or family that be with him? Even if it’s just you setting aside 30-60 minutes to get to another room, take a shower, do laundry, etc. that may be helpful. With someone sitting with him, you might be able to take a walk, or have a quick bite to eat with a friend. If your hospice team has a social worker or chaplain, brainstorm with them about ways for you to take a break.

        Yes, your husband is suffering. But so are you. His life is important. But so is your life.

        I so wish I had more to offer. Thank you for your courage in sharing your heart, hurt, and words.

  37. I sit here tonight with my mom on hospice for 14 days now dying of bladder cancer at 76. Days 1-5 we were still talking and laughing. Day 6-14 just breathing – eyes open, mouth open, swabbing her lips often, it’s 4:15am I’m exhausted. I’m everything this article described. I’m mad. I’m sad. I’m hurt. I’m frustrated. I’m sleepy. I’m over it. I prayed and prayed for her life. Now I mostly pray for her death. She’s lingering. No food, water or anything in 7 days. Tongue is white looking. I can’t keep it damp enough. I’ve said everything under the sun to convince her to go. She’s seen everyone. I’ve felt resentment. I feel bad when I do. I just want my mama at peace. I want to heal. I can’t seem to even think about healing with mama still lingering like this. I can’t break free from it. Please pray for my mama to go in peace.

    • Pops:

      I will keep you and your mama in my prayers. I also recall praying for both my father’s and mother’s deaths. When a loved one suffers, it is painful to experience. And when their suffering causes us to have those “mad,” “sad,” “hurt,” feelings, that makes caregiving even more anguished and complicated. While it seems impossible to understand why someone lingers, it obviously does happen.

      Thank you for sharing your experiences.

  38. Most of the comments here, although I didn’t read all of them are about end of life for people on Hospice. My husband has Huntington’s Disease. He is not on Hospice but he is dying a little bit each day. He was diagnosed in 2018 and is 67 years old now. Just before we found out he had HD he tried to kill himself but was unsuccessful. Watching this man who was so full of energy, witty, and could fix anything now have trouble figuring out how to turn on the TV is heartbreaking. Our journey will probably not be a few years but could be 5 or 10 years or longer. He is so unhappy and he wishes he could die. I love him so much but I don’t know how I can be the caregiver he needs and deserves for so long. My daughter, Shelley gave me your article and Winnie Birdsong is my sister -in-law. I think you may know her. Would love to know if you have any wisdom to share on this topic.

    • Brenda:

      Thanks for taking the time to share this. What a difficult, demanding time you and your husband (and family) are going through. I wish I did have some wise words. What I can cautiously suggest is what you may already know about and be doing: connect with any and every HD support system you can. Maybe some of your connection can be in-person (though that’s problematic with Covid-19). There are likely short-term and long-term ways of getting support that are online. The more support you have now will help in the future. I would also encourage you to do things to take care of yourself. Take advantage of any resources that will allow others to care for your husband while you take a break . . . whether that break is for a nap, grocery shopping, or spending time away with friends.

      Keep sharing/talking/complaining/laughing/crying with others (in person, email, “face-time” online, text). Again, use the resources from places that have been created to support those with HD and those taking care of them like the Huntington’s Disease Society of America (HDSA).

  39. My late husband passed away 3 years ago at 60. I moved into my 92 year old mom’s home to care for her. She has been on hospice for 4 months, being completely bedbound & needing total care.
    Several times she’s appeared to be near death & my family has emotionally prepared for this. The hospice nurses have said at different times that she most likely would have up to a week left. Yet, then, out of the blue her eyes will open up & she’s back again! This has happen 4 times so far. Always, I’ve been so happy! Until this last time. This last time, I’m just exhausted emotionally. I’m the only one who cares for her, except a hospice aide who comes in briefly once a day. I’m so depressed. Day after day of this, over & over. She’s very confused & extremely thin. The word “rally” has now become an unwelcomed word. People say they are proud of me. I wonder if they would feel this way if they knew what I’m really thinking these days. Compassion is turning into resentment.

    • Jen:

      Thanks for so much for taking the time to comment. I am so sorry for what is going on–and going on–with your Mom. I understand what you are saying about the word “rally.” Unless we are the ones doing the non-stop, 24/7 caregiving, “rallying” seems like what we want for every person near the end of life. Not true at all! Though it’s tough to do during this (also 24/7) pandemic, I wonder if there’s any way for you to add more help? Even a small break in a day or week can make a difference.

      But, I don’t really know your situation and any of my “advice” is suspect. Just know I am glad you are sharing about this impossibly difficult time.

  40. So happy to have found this site. I, along with other family members and a great aide are caring for my 86 year old aunt (and Godmother) who has not gotten out of bed since September of 2018. We have a supportive family and we are “all in” on caring for her at home and not sending her to a nursing home. I must admit, I’ve had enough. I am not sure how much longer any of us can take it. I know this sounds terrible. Back in December, 2018, we were convinced she was on her deathbed. Three years later…..and we are still here doing the same thing. I think I am most angry at myself for allowing her to refuse to get out of bed. I keep thinking I should have and could have pushed her and she would not be in this situation. Part of me feels like she did this to herself and we allowed it. That said, it is hard to get anyone to do anything they do not want to do. She has been on and off hospice three times. The home care nurse has just recommended hospice again – the FOURTH time. I keep feeling this is going to go on another year. I have a job (am a registered nurse so everyone expects me to pick up a little more slack just because) and a family of my own. I hate to say or think things like how much longer but I have gotten to where I feel like I am going about the motions and wake up every day thinking “is this the day” and then say “nope….this is gonna keep dragging on”. I love my aunt but it is painful to see her like this. She weighs about 60lbs, I don’t think knows what is going on etc. Every time I am with her, I feel like a terrible person because I question myself and have convinced myself that I could have and should have done more. The guilt is just over the top.

    • Brenda:

      Whew. You and your other family members are dealing with a lot. And, as an “outsider,” I would try to convince you that you have done “more.” You have given your aunt the gift of doing what she prefers, and of making sure–up to now–that she is not in a nursing home.

      I doubt, in any reasonable perspective, that you are a “terrible person.” But it’s extraordinarily hard for caregivers not to label themselves in that self-critical way. You are exhausted and overwhelmed . . . how can you not have negative thoughts?

      When I was dealing with my father’s dementia, and (from a distance) trying to be supportive of my mother, I knew Mom was deeply concerned about money. After years of taking care of him, could she afford to continue keep Dad in a facility? That facility represented a reluctant but positive step in taking the burden of care from her. She could be a little bit more of a wife, rather than only a caregiver. With Dad in his early 90s, mentally “gone,” but physically still strong for his age, how long would he keep going? I helped her calculate that they could afford the care until he was 100 years old. A couple of years later, he died at 95, and all of my calculations didn’t matter . . . except for one thing: Mom worried less about money. She could “see” the short-term future and was reassured her/their financial world would not immediately fall apart.

      I tell you this because I would gently suggest that you, and the others in the family caring for your aunt, ask yourself about the future: can we keep doing what we are doing into the future? What if she continues for three more years? Can you continue like you are? Can your family members? Maybe, if she does enter hospice care for a (yikes!) FOURTH stint, use hospice’s extra support/resources for a time to seriously evaluate what you and your family can keep doing. Maybe during hospice care, she transitions to a nursing home. Maybe, if the hospice says (again!), she’s no longer appropriate for the care, you/your family have a Plan B ready (like that nursing home option).

      As much as you are respecting her needs, don’t forget about YOUR needs. One of the many people who left comments here wrote to me in an email. She, a caregiver for years for a dying parent, said: Their dying is not as important as your living. That’s easy to say, hard to remember! But your life, and living, and sanity, can’t be “shoved” aside day after day, month after month, year after . . .

      With all that I’ve mentioned here, please don’t hesitate ignore it! It’s presumptuous of me, or anyone, to give any advice to your specific, difficult, and personal situation. Nonetheless, I am glad you have shared what is going on. Thank you for your profound commitment to your aunt, and your honest words!

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