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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Comments

  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!

      • 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.

    • 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.

  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.

  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

    • 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.

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