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 . . .

  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.

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