Why dying at home is not all it’s cracked up to be

 

At one point during my mother’s last month on this planet, she was offered an extra pillow to make her more comfortable. She half-joked that the pillow belonged over her face.

If I had known what her final days would be like, I may have obliged.

Dying at home is all the rage. Letting Granny wither away in a hospital or nursing home is so passé.

The die-at-home argument is persuasive. Proponents trot out surveys that show most people would prefer to die at home. Pass away in a familiar environment, surrounded by loving family members, instead of an impersonal, antiseptic and/or urine-reeking institution. Plus, it’s a heck of a lot cheaper.

Sign up with a home hospice agency, and compassionate nurses and staff members will provide your loved one with palliative medical care, medications, and equipment, completely covered by Medicaid and Medicare!

Dying at home may be awesome for the dying. It’s hard to say, since none have bothered to fill out a customer satisfaction survey from the other side. For family caregivers, the home hospice experience is not always as rosy as it is portrayed. It can be a gut-wrenching, soul-draining nightmare that no amount of therapy will ever be able to rectify.

A family’s home hospice experience will vary greatly depending upon two factors: how involved your family is and where the dying person lives. Ideally, multiple family members will help. I’m an only child, and with no relatives nearby, I was designated primary family caregiver. I got to call all the shots but I also had to execute all of them. In a big city, a well-staffed home hospice company may be able to provide more comprehensive, around-the-clock care than in a small town like where my mother lived.


I fully supported home hospice, after what happened to my dad.

In 2011, my father died in a skilled nursing facility almost 200 miles from home. He collapsed in the shower, in the arms of strangers, his emaciated frame and his Alzheimer’s-decimated brain finally releasing him from the zombie state he had lingered in for a year. Because the staff couldn’t locate the DNR order, 911 was called and an EMT performed CPR until my father’s ribs broke.

That was a horrific way to die. Dad had always feared death, and we certainly didn’t do him any favors with that chaotic ending. I’ve carried the guilt that my dad died alone with strangers in a city far from home, right up until this moment.


I just watched my mother die at home.

And I doubt that it made any difference that she struggled through an agonizing death in her own lumpy bed on her faded, 25-year-old bedsheets versus a sterile hospital bed.

Over her last few days, her head was thrown back, and her glassy eyes stared at the stucco ceiling the entire time. Would it have mattered if the stucco had been replaced with institutional ceiling tiles? Probably not.

Did it matter that I changed her diapers versus a woefully-underpaid stranger?

Mom said she never thought I would be wiping her private parts or giving her sponge baths or inserting suppositories or any of the intimate tasks that family caregivers may find themselves providing, even with home hospice care.

As Mom further deteriorated, becoming totally bedridden, she asked me an unanswerable question: “What has happened to me?”

The last week of my mother’s life was a mixture of pain and confusion amid a morphine-induced stupor. I began to view her less as my mother and more as a patient.

There was not much the home hospice nurses could do, other than make sure I was giving her enough pain medication and help me move her to keep her comfortable.

The daily nurse visits were comprised of checking vital signs and completing a Medicare-required survey. The social worker arranged volunteers to provide me brief respite breaks. The chaplain was away when Mom died, so we never met her.

I was alone with my mother when she drew her final ragged breath in this world.

Would my mother have been better off in an inpatient hospice or nursing home? (There are no inpatient hospice facilities nearby; the closest care facility is a half-hour away.) She surprisingly thrived in the skilled nursing facility she was placed in after cancer surgery three years ago. She loved the social interaction and learned how to walk again, thanks to a stellar rehabilitation program.

Of course, there was no hope of recovery this time. My mother simply needed a waiting room until her failing body allowed her spirit to depart.

I don’t regret that my mother died at home with hospice care. I don’t regret being her faithful, albeit fumbling caregiver.

I regret that I was so preoccupied with caregiver duties, like administering medications, changing diapers, and treating bedsores that I lost sight of the simple joys that my mom could have experienced over the waning days of her life. One more time outside, to feel the sun on her face and watch the big, black crows soar through the air. A spoon of butter pecan ice cream, her favorite treat. A sip of black coffee, her favorite beverage. An extra hug, another kiss on the cheek, holding her hand a little longer.

It may take a village to raise a child, but you may discover a ghost town when it comes to the dying.


Joy’s essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.

Written by Joy Johnston
Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.

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144 Comments

  1. In Canada it is much different. Health care aids with hospice or palliative care programs would usually carry out all the tasks this poor woman was left with. Goals and wishes are developed with the client and family and agreed to by all. The goal is to provide the family with rest and quality time. Certified palliative nurses would be more involved to insure preventive assessments of both patient and family. And patients can choose where to die- home, hospice, long term care but they are not forced to go home. We need some compassion here! Unfortunately the US is behind Canada and other countries in Europe when in comes to the practice and delivery of hospice and palliative care. It seems as one person said that insurance companies are using it as a way to reduce costs instead of a method to improve care.

    Reply
    • My 2 sons (31&29) took care of my poor soul wife (62) after she came from hospital for home hospice. We were proud to do it- to try and it was a 24/7 battleground at times. However it was very intimidating as they brought in the hospital bed and some supplies and then came the crash course from the head nurse and then she was gone and it was “game on” from there. Suddenly I was changing her diapers-my sons saw everything- and she would say how ashamed she was that her sons now knew all her private parts- ugh…. We were not thinking about that -just doing. When she would say she needed “potty” it was battle stations as one son would hold her up and get her out of bed and I would position the commode. It became clockwork. My wife also had sundowners and would sleep at most 3 hours a day. While it was pretty much all on us there was comfort knowing Hospice was a call away and they were pretty good. Lets face it they did things we were unable to do with any confidence. I felt like a drug lord with all the drugs to give her- the horrible names of Haldol-Lorazepam- Dracadon- morphine still ring in my ear…. Keeping notes and lists of medication times. The struggle to get her to eat with pills mashed into her food. Unfortunately due to terminal lung cancer that had mets to her brain ( given 2 months to live) my wife was no longer the person she once was. It changed her personality and attitude for the worst. She treated us not as loving family but as her servants. She became demanding and insulting and after never using the word-hurling the eff word at us with disgusting ease- but we knew it was not her. It was sad and tough to take. We gave her 3 weeks here and then one night on emergency call they made determination to take her from our beat exhausted selves to the inpatient facility. Where she passed after 7 days. We felt as if we failed trying to keep her home. We saw and heard things-had angry fights that as it hits year 2 in August are still too plain to see. You want to forget that part of life but it never lets you. My living and dining room became a MASH scene. I never feel good in those areas of the home anymore because it saw and heard so much. The one thing very disappointing was that my sons helped me and her own daughters did nothing. In fact the one who lived near and would bring the grandkids would shoot out of the house pronto when her own mother would say “potty time-I need to go potty”. There was none of those tear jerking moments you see in movies between them. I guess she did not know what to do but it was very disappointing. Finally that GHOST TOWN you write about? That was her large family that came up for her wake and funeral and did not hardly say anything to me or my sons. They stuffed their faces after funeral mass at a breakfast I had for all and ran out without saying good bye. Its 2 years and I can count on one hand the phone calls. This from a family I had known for 44 years. Not a one approached me after the mass and breakfast!
      But as for Hospice they did the best they could yes it was overwhelming -scary-exhausting but it is something my sons and I look back on saying “we did our best” with a lot of help from our friends at Hospice.
      I cannot fathom how they hold it all together going from one case to another-being attached to someone then having to leave for another-knowing what the result will be.
      They were all tough and dedicated and yes they were also emotional-they were not hospital robots and I could feel their care and would get hugs that I badly needed.
      Hugs that were to have been for my wife and I the next 20 so years of happy retirement – exchanged between strangers in a battle that yielded nothing but regrets and remorse and days of grief for the rest of my life.
      Sorry if I got off the tracks.

      Reply
      • Wow. I was just sharing my 5 month hospice journey with a friend. Hospice was a brand new concept in 1986 and as an ICU nurse in the backward south where I had moved from Ohio State University Hospitals’ progressive levels of care, it was my father and I learning together.

        I said I’d never return to nursing, but I did. I went to hospice care, then eventually became an NP specializing in palliative care and hospice.

        Anyone with head metastasis or a primary brain tumor is difficult , very difficult to care for. You needed paid caretakers in the home. I’m sorry your hospice did not give you a list of private duty nurses or that you had not hooked up with a support group where that kind of information is shared.

        When the hardware in the head breaks down, each day albeit each HOUR can be bizarrely unpredictable. Balancing that list of medications cannot be appropriately done when giving by mouth. There should have been a tiny pump and patches to maintain consistent blood levels. GI absorption is so severely altered when brain circuits and hormonal feedback mechanisms are winding down and the liver is unable to release what is needed. It is always wonderful to have compassionate hospice nurses, but having NPs who make weekly evaluations, who work collaboratively with certified hospice and palliative care physicians to aggressively manage symptoms is key to the experience the family dynamics.

        What you describe is the fall out of too many competing hospices with inadequate oversight for symptom management. There were so many opportunities for them to offer you a better experience. I’m sorry that you all live in the wake of stress and bad memories.

        Perhaps it is time to seek some one to discuss this with so you can move forward and heal. You are still alive and have what I hope are years of great life ahead.

        As a widower myself, I discovered that moving out of my home and reinventing myself at 67 has become so empowering. There are tears of fun and growth, but those things do not visit us, we have to resolve to discover who we are, to process and to seek out a new vibrant life. Change is sooo hard but GROWTH is really on the other side of our comfort zones.

        You are honored for the work you did. It was no failure!! It was just a learning experience which tested your limits! Bless it, have a ceremony, and resolve to see what life holds when you let go of beating yourself up with those memories. Surely your lives were rich and deserve to be preserved in the proper context. I hope too that each of you will acknowledge that you were not served with the expertise of a solid hospice team where the physician also came to visit and help plan options. You do not know what you do not know. You were given the assignment to dig a lake and then provided a spoon?

        Remember this: Well done.
        Life is messy and scary and surprising. It is what we hold on to and what we CHOOSE to let go that defines quality of life.

    • I’m not a big proponent of the dying at home. It’s painful to watch

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  2. Wow, thank you so much for sharing this. I can relate to every single thing that you have said. I appreciate your honesty & candor, as I can only seem to find happy articles on this subject. This is the most agonizing experience I have ever been through, and I am alone with it like you. Your last sentence is SPOT ON truth!

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  3. My father just died at home he refused to be in the hospital

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  4. Caring for a dying loved one at home in the final stages is a NIGHTMARE for family members.
    I’ve done it twice; truly believe it is Best for All involved, for the dying to be in 24/7 care with Hospice.

    Reply
    • The moment my husband died (at home) the young home health care worker was hanging all over me crying-as if I was suppose to comfort her. She would not give me space. She took that last private moment away from me with her hysteria. Where did she get her training-if any at all? Also, I could not sleep because hospice nor LTC would provide a med tech at night and I still had to work 2 jobs.

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    • My BFF’s husband fought cancer from home for so many months, my BFF is not a wilting violet and nursed him when he was not in the local country hospital. They went to his GP and explained how the pain he was feeling was not under control by the med’s the GP prescribed. She was in touch with the palliative care nurse for a couple of days before his last one at home and who had not turned up at their home, the pain had broken through and no amount of med’s taken at home was relieving the pain. She sat with him during the night broken that she could not give him anything to help his pain. It got to a stage in the early hours that he was begging her to end his pain with a pillow. (Country Victoria can be a lonely place in the middle of the might) She finally packed him in the car at went to the local hospital, after a couple of hours they told her swallowing tablets were not working (holy shit did they think she did not already know that) and he needed a med pump, we could not understand why the palliative nurse had not turned up and made this request when he was still at home and then it was too late.. My friend has PTSD from those last few days and I would not wish that on anyone.

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  5. I’ve been a private care giver for 22 years. I’ve helped countless family’s with the transition. Yes its expensive, but it is so worth it!

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    • Shane, there are a lot of cancer patients and their families that cannot afford to pay for private care giving.

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  6. My husband died in the hospital where he’d been for two months. I was there every single day and often overnight. I participated in much of his care and learned the ropes quickly as he was transferred to various floors regularly depending on his current condition. The hospital staff was amazing and supportive and cared well for both him and us. The last night of his life the family gathered to say goodbye, sing hymns, and tell him the things we each wanted to say. It was a holy time, fully supported by the ICU staff, and their care, suggestions, and direction helped us all say our final goodbyes with dignity, honor, and peace. We were allowed to stay with his body for as long as we wished, and friends came to the hospital to say their final goodbyes after he died. There was even a tray of food sent for us, ordered by the ICU staff (we were a sizable crowd). I didn’t really have the choice to bring him home, but will be forever grateful for the care he received and the manner in which we were able to be part of the process. I say this so that others will know that there are options besides a sterile, impersonal hospital death.

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  7. When one dies alone is horrific, just thrown away without worth!!!! Guess that’s karma???

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  8. My husband suffered too much. Hospice wasn’t around much and I was exhausted, emotionally overwrought and really isolated. Despite a morphine pump and oxygen my husband couldn’t breath and was in intractable pain. I researched it and spoke with hospice. The only other option was 5o transport him to the hospital and put him in an induced coma so he could die in peace which despite knowing he was dying made me distraught. So I was trying to come to grips with this and was about a day away from doing this when he collapsed from a pulmonary embolism and died. It took about 2 hours for hospice to get to the house and he was basically gone. I am still feeling traumatized and bitter. I’m trying to get past it.

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  9. I’m grateful for the time I had with my mom and my son, who I took care of on home hospice. It was no easy task, but I wouldn’t trade those final moments as heart breaking as they were for anything.

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  10. Yes it is hard. Yes it is very draining. Yes you lose sleep. Some just can’t do it that’s ok. My Momma just passed away this March 2017 here at home. I took care of her. I would not change anything for the world. I got that last hug, last kiss, last I love you, last time holding her hand. Last words seeing a white light and telling her daddy was on the other side of that light waiting for her and that it was ok to go to him cuz I would be ok. Then her last breath came. I will never regret any of the loss sleep, stress that I dealt with. Having those meant the world to me. Those will be my memories not pain and sorrow. Those last few moments are mine to cherish.RIP Momma no more Cancer and no more Alzheimer’s. You are free from this. I love you.

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    • I enjoyed reading about your experience as it reminded me of the time I got to spend with my mother before her death of cancer. I will always have some guilt about not being there to the bitter end but grateful that other family members helped and they were there to say goodbye for the last time.

      Just try to remember to ask those questions that you can imagine you will wonder about as you become older yourself. I did not and truly regret that there are many questions that, of course, cannot be answered now.

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  11. Watched my Dad die from Cancer 5 years ago partly @ home, part in a care facility & Mom going through dementia in a care setting now @ 76 years old, Dad
    was 76. The very end he was hours away from home near a Cancer center & I had to watch my parents kiss goodbye and drive my Mom back the 3 hours back home to her care facility. He was gone only a few days later. Wish beyond wish that I had been able to stay there with my Mom till he was gone. He was basically in a sterile room all alone in his last hours. Wish we could have all stayed by his side, but it wasn’t meant to be. Seeing what my Mom is now going through long distance, even though she doesn’t realize what’s happening, is hard but sadly when you move away from your parents you can’t know the future. I do know they would not want us to quit living our lives. They had wonderful, long lives and we all will see my brother who did not have a long life & many other family members one day.
    I am grateful to all in the caregiving communities in institutions & outside of them. You have the hardest job!

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  12. One of the most difficult times in my life. I loved my Dad so much though I would have done this all over again, he wanted to die at home and we did everything we could to allow this last wish. Miss him everyday

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  13. My grandfather passed away at home and for him, I believe that was where he was meant to be. Our family is pretty big, lived near by, and when he died it was most where off work, and everyone could come say goodbye. When my grandmother passed, she was at a care home. She had dementia and type 2 diabetes, and last summer she enter the 6th stage, wouldn’t eat, take her medicine, and didn’t have the strength to move. In December she had a stroke after Christmas, which left her in the hospital for almost a month. She was then transferred to a skill nursing and then we found a facility that would allow her to have a big room to herself (I did mention my family is big right? 16 first cousins and they have kids, and they always brought their kids because she LOVED children). My Aunts and Uncle made it difficult to care for my grandmother. They didn’t want to work with each other, had to be the best care giver, blamed each other when ever something happened, and refused to listen/believe the doctors and nurses from hospice. She was put on NPO and they begin to shove shakes and food in her mouth. The facility and nurses helped us have more time with her and I am eternally thankful for that.

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  14. I work in hospice and one of the problems in Ca is hospitals don’t want people to die there. And care homes are very expensive for family’s. The fact that caregiving is 20-30 dollars an hour is crazy. Why do we have to create another unhealthy situation for the caregiver in other to be there for their loved ones? Everyday I help people find help. I think they are the heroes!!

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  15. My parents passed away at home 3 years ago – 30 days apart. I was their full time caregiver for 4 1/2 years. I can’t say it was an ‘easy’ time by any means – it was exhausting on every level – mentally, physically, emotionally…and it has only been in the last 2 or 3 months that I have begun to feel like I was close to functioning normally. That being said, I was able to fulfill their wishes and care for them at home until the very end – in that process, when my Dad was nearing the end, we put their hospital beds together and took off the center rails so they were close – they had been married 64 years. Their passing was very painful for the family but there was great comfort in knowing I was doing what they wished – so glad to do that.

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    • You did a great job, my friend. I admire you for giving up much for their sake.

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    • You are so lucky to have had them together till the end! ❤️ I always wished that for my parents. I am so very sorry for your losses!

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    • Wow-Tremendous job you did!

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  16. Dying is hard work for the one who is dying. It is very hard to watch not being able to do much to help to make it easier.

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    • Well said Deb. Also, all hospice care is not created equal. Asking family members to care for a dying loved one is incredibly difficult.

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    • Wish I would have known more to possibly have made a difference.

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    • Debbie Heim it’s just a hard place to be, even when you know.

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  17. My mother passed away last September. She wanted to be home and yes, it was very hard – both physically and emotionally. Her primary caregiver, my Dad ended up in the hospital unexpectedly the last two weeks of Mama’s life. We were told he would not make it. A huge twist to an already difficult situation. Mom was under Hospice Care. I took FML from work and thankfully, Daddy did make it – he arrived home 2 days before Mama died. I wouldn’t change a thing.

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  18. Those who goes in Home for d Aged, those have no families or Children are busy of their Jobs..I am working as a Caregiver,,in our place u will be attended till ur dying moment..dont feel d pain, and everything is arranged…till RIP…

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  19. we had home hospice for my sister for several months. She died in her own apartment. Her last week was horrible for my family but we could all hang out there. I wouldn’t have it any other way

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  20. I have helped care for my fatger as he died a terrible death at home (though his last breath was actually in the hospital, he wasn’t hospitalized until his last moments), My mother, my dear friend and mentor. It’s not easy. It’s ver sad, tragic and your mortality and the brutal truth of how our bodies betray us smacks into you like a freoght train. But, I would not trade 1 minute of their comfort during the passage for another hour of sleep. It was the hardest, worst, most loving thing I’ve ever done. But, I do not think less of those who cannot do the same.

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  21. Even though it’s incredibly stressful, I wouldn’t put my dad in a nursing home. He has Alzheimer’s and he gets confused even being in his own home, with his own family. I can’t imagine how much more confused he’d be in a strange place, surrounded by strangers. He and my mother used to “wipe my private parts.” They didn’t send me away someplace, for strangers to care for me when I couldn’t care for myself. So what’s wrong with ME returning the favor when they need me?

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  22. Did the hospice at home for Dad. Excruciating. Exhausting. I could not do it again. When it is Mom’s time, it will be inpatient hospice.

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  23. My mom died at home. And yes, it is terrifying. But for her to die with us, instead a bunch of strangers, and in her own home, was all worth it.

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  24. My mom died at home. And yes, it is terrifying. But for her to die with us, instead a bunch of strangers, and in her own home, was all worth it.

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  25. I wouldn’t change a thing. My dad died in my home and I told him every day all that he mean to me. Last hug, kisses all day and best of all he knew he was loved. Was it easy HELL NO cant seem to cry because it was yes that hard. And still a pill I cant swallow
    But that to death by a concrete wall and probably alone. That no sir. I would not change nights without sleep not eating and learning all i had to for him to feel blessed he could be at home

    I do respect others wishes. But my dads where his idea of crossing on his terms that now i understand.

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  26. I would prefer to die in hospital or a care situation because it takes pressure off those feeling the pain of impending loss.
    And as some have pointed out the carer /nurse role takes away from us time.

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  27. I took the last picture of my aunt Freda before she died from lung cancer. She is looking at and listening to her nephews playing guitar with her cat by her side. That cat never left her side, even a few hours after she died.
    This was the best option for her, but everyone is different.

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  28. Both my Dad and Mom passed away at home. I wouldn’t have had it any other way. Thank God they passed peacefully.

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  29. I did this 3 times in my life 21 years ago with my grandmother. Was just me my husband and my two preteen boys. There was no hospice no one to help us it was really hard on us. Was one of the things it probably meant my divorce. I took care of my mother last few years of her life they have of my sister that was a hard one even with hospice. That was 5 years ago. 3 years ago this month I buried my husband he had cancer and fought it for year. We had a hospice with him too. He spent the 3 of 4 camping on the mountain. So it was probably three of the hardest things I’ve ever done in my life. I’ll see the one with my husband physically mentally emotionally worn out. I would do it all over again.

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  30. My dad passed on June 9, at home, in his bed, surrounded by his loved ones. Would not have had it any other way. We were fortunate to have his body for several hours after he passed, all of us, including the great-grandchildren, were able to spend private time with him. My 8 year old great-nephew, who was the closest to my dad, laid on my dad and had me put my dad’s arms around him. He would not have had that opportunity to have his special goodbye if dad were at a hospital. Hands down, one of the best decisions our family ever made.

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  31. I am glad my husband died in hospital because having the memory of his death in our bed would have made grieving worse.

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  32. I work for a hospice house and I can’t tell you how many times we hear how exhausted the family members become caring for loved ones at home. And, sadly, Medicare doesn’t pay for in home private duty nursing and hospice agencies are not equipped to staff for private duty. It’s a tough place for a family to be in caring for a loved one at end of life

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  33. I am going through this right now without the help of available family. Mom will remain here at home until she draws her last breath. Your words have lifted some guilt that has been burdening me for quite some time. I too have lost sight of the woman I once saw as my mom. She is increasingly becoming a “Patient”. I feel like I lost my mom some time ago & the person now before me is a stranger I don’t recognize, yet feel much compassion for. If I had 1 wish in this world, it would be to go back in time & spend one day with my Mom, vibrant, healthy & of sound mind.

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    • Yes I understand the patient part, but remember your giving this patient much more personal loving care and assistance than any hospital or care home could ever do.

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    • Bless you dear. I did this with both of my parents and in retrospect wouldn’t change anything.

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  34. This Christmas will be two years since my husband passed and after caring for him while ALS aggressively robbed of his facilities for four years I am still trying to interpret what reintegration should feel like.

    I had little help until we hire a full time caregiver and moved 2.5 hours across state lines to find appropriate housing. There is so much that is still so burdensome for me.

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    • God bless you and give you strength

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  35. If anything, this article points how much caregivers need more than just ‘some help’ or ‘some training.’ Quality of Life, even while dying or for the caregiver is not being adequately addressed. Now, I was clear with Hospice there was no way I could handle my mother’s grooming due to my torn ligaments in my hand, and the mental taxing situation of having my mother dying from COPD. Due to this, we had more nurses come around. Having dogs helped with the laughter. I moved the tv and seating so we could still watch shows with her. We had her in the living room, so while I was cooking, doing laundry, you name it, she could watch and be a part of it. From these articles, everyone seems to put their family back in their bed rooms. I made the choice for ease for interaction and movement, the living room was the center of her care. Family pictures were on the walls around her. Dad and I took turns sleeping on the couch to be within ear shot at night. We did this for 3 weeks, when if she had stayed at the hospital, they were expecting 5 days, at most. Was it exhausting? Yes. Was it tough on us, definitely. Due to the lack of a Chaplin being able to visit, I went through the effort to become ordained, so she could rest there was someone like that near her. She was Catholic, and any she wanted on her as she was getting closer, I made certain she had. Even with clean up, before they came to pick up her body, I removed them and bagged them for later, to put in her box of ashes, as she wanted. The support system after this wasn’t really there for either of us, and they were more interested in helping my father, and not me. The distinction that the child is not as important as the spouse baffled me, but there you have it. They also didn’t care after a year after her death, even though a dementia patient, which my father is, takes up 4 years to grieve a year’s worth of a normal mind person. I would not change how we handled it. Her death stages helped dad accept how she was, indeed, dying. No one was at fault, mis-stepped, etc. Was he still angry she died? Yes, but it wasn’t as bad as being at home, and coming in to find her gone. He had information right in front of him, at home, seeing how COPD was taking her away. Considering how this helped him grieve, I wouldn’t give up the right to have her die at home, ever. We were with her to the end, and that is what mattered the most to us. If I can have him at home for his end, which I am hoping is decades away, I will do it again, regardless how taxing it is on me. I only hope there is more help there for the caregiver by then.

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  36. We had planned this for my father in law, with in home care assisting, and myself as the main caregiver, but we have my husband working full time to make it possible for me to stay home, waking up and coming home each day seeing his father progress into his huntingtons, wondering if he too is going to inherit hd like his dad. Then there’s our 6 year old daughter, I fear it’s too much for her to witness at her age. At this point, we continue with our plan, but have to remember to keep everyone’s best interests at heart, not only our father in law.

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  37. I am care giver to my aunt my husband and daughter in law help me all they can they have been my strength. She is advanced demtia patient an fell am broke her hip so now can’t walk . My daddy s last wishes was to take care of his sister and that we do. Yes she has a son somewhere doing God knows what and yes he should be doing this but I love her enough to put my life on hold not because I have to but because I want to. If it were me in this condition she would do the same. Yes we used 5 days respite care in 7 months but that want happen again we will do the best we can to ensure her last days are the best she can have. Thank you for what you can do for your family to the caregivers I know first hand how stressful an drained you are.thank you Todd Messick and Jessica Messick for the 24/7 help you give freely of your heart thank you kindred hospice for your help

    Reply
  38. I’m caring for my husband at home with the help of hospice care. I know he is happiest at home. With hospice we are allowed respite care every two months. I can’t use it because he is so unhappy when he’s not home. Family tells me I need to take advantage of the respite care, but I can’t do it knowing that my husband is miserable. Help from family is very limited. We are already paying for extra care at $20 per hour. To pay for that just to get out of the house for a few hours is crazy.

    Reply
    • Exactly! In the two years my husband has been on hospice care, we have not used respite. He is so miserable without me.

      I do get out periodically but that is because our adult children and a few friends sit with him so I can.

      Home health, out of pocket, is unreasonable. My husband can’t get a drink, can’t feed himself or use a phone but Medicare calls help “custodial care” and doesn’t pay for help.

      When the stress kills the caregiver, Medicare will have to pay for his full time care. It’s so dumb.

      Reply
    • I hear you!! My husband can’t make a phone call, feed himself, change the tv channel or even drink water. I can’t leave him without a family member here or our expensive caregivers here who know him well & I can feel confident that they will actually do what needs to be done. I am spending our retirement funds to handle this and I am 57 years old.
      Going out to dinner would cost me a fortune. Plus he doesn’t even qualify for Medicare until October, but stopped working in April 2015. We are paying for Cobra right now which was actually cheaper than “Obamacare”.

      Reply
    • Please make some time for yourself Sheryl Chauvin.
      I think you need it.
      You are doing so much with love

      Reply
    • I got respite every month through hospice. Medicare paid.

      Reply
    • Julie Pauley we do have respite available but my husband doesn’t do well when I’m not here. He always has a set back when I’m gone, and it’s just not worth it.

      Reply
  39. It really depends on the situation. My mother-in-law hoped she could die at home, but inpatient hospice proved to be an environment that was best in her final days. Had she been at home, we would not have not been able to test her condition & respond with medications to make her comfortable–the delay waiting for home hospice to arrive would have resulted in unnecessary suffering. While skilled nursing staff attended to her immediate needs, our family was by her side.Ultimately, people don’t want to suffer & die with strangers, or alone.

    Reply
    • You are so right. It really does vary from person to person. And each situation is personal and there’s no right or wrong way. It’s what’s best for all involved in that particular situation.

      Reply
    • I do understand your thoughts. We live in a small city that doesn’t have all the availability that larger cities do. Therefore with hospice instructions I assisted my dad to his comfort. It was very hard to keep up with his meds, but I did manage and I didn’t get much rest. It was just my mom and I at the time. He was at peace and I would not have done this any other way. I took care of him with love and patience more than what he would have had at a hospital or a nursing care home.

      Reply
  40. Ok now, I have lived this a few times. Each is different and all are mentally, physically and spiritually taxing. Did we make the right choice? Am I doing all I possibly can? Then after…..Oh Lord! If I had done this or that? Now that I’m in my 60’s and very experienced in this….I do not wish this upon my family. Oh yes, while I may wish to die in my bed, I’m simply not going to do that to MY loved ones left.

    Reply
    • I just turned 60 this year, and after experiencing everything I’ve experienced over the past 35 years as a caregiver for both family and private clients, it’s had ME thinking the same thing you are. I want it to be as easy as possible for my family, and if that means a hospital or nursing home, then so be it.

      Reply
    • Penny Ferguson King Giant hugs!

      Reply
    • Penny Ferguson King As you, Penny, caregiving has been my profession. What does that mean?…LOL…that we also must step in for all family members. The stress is greater because your family believes YOU know more medically. Nope, some, not really. I would do it all over again because there is also great honor in this in more ways than I have words…

      Reply
    • I agree! I absolutely refuse to do this to my family. I will very happily go to the hospital, skilled nursing, or wherever is best for me. But, I will NOT be at home.

      Reply
    • Laura Junjek I couldn’t agree more. I feel honored that I was able to care for my
      Mom and other family members. I learned a lot, which now helps me with private clients. I’d do it all over again. In a heartbeat.

      Reply
  41. My Daddy died July 2015 at home. That was what he wanted. I am his daughter and was his caregiver. All I can share is that his last week here on earth, as his body slowly was shutting down was the absolutely gut wrenching but also the most blessed time of my life. I will not go into details but the dying process can be extremely hard to watch. But knowing it was what he wished for brought me strength and comfort. With the last beat of his heart he was surrounded by my mom, myself, and a caregiver that helped me with my dad. And just like that…..It was over. I truly believe in my heart that there is no greater joy then to bring a baby into this world and be there holding the hand of a loved one when they leave this world.❤️

    Reply
    • I am with y’all.
      We had Mom in our home for eleven years. She was a Saint . She never wanted to be anywhere else. It was a blessing.

      Reply
    • I was also caregiver for my Dad and it was an honor to my Dad. I saw sides of my father that i had never seen and it was good. I think it is the last loving thing you can do for someone you love .

      Reply
    • I had exactly the same experience with my dad. And yes, what an honor and blessing it has been to me to bring my children into this world and hold my parent’s hand as he left. It’s hard to explain that to someone who hasn’t experienced it.

      Reply
    • I also did the honor for my dads passing last january. It was hard to say goodbye, but he did it his way at home. Just lost my mom last month and she did it her way. She passed at the hospital.

      Reply
    • I did the same for my husband, and it gave me some peace.

      Reply
    • Went thru it too with my mom, it was heart wrenching for us all but it was her last wish, my dad was really torn apart. He recently passed and at home in his sleep, it was what he wanted.

      Reply
    • I watched my Dad go through the process of withering away. I was not with him the moment he passed but for days I prayed that his family that went before him would come for him. I am now a care giver for my Mom. Honestly, I dread the thought of watching the same happen to her. As it is, each week, each month that passes, I can see her slowing down physically and some times mentally. She wants to be home for her final breath as do many. I will be there for her until that moment. As for me, I will probably pass with no one physically by my side, that is my request.

      Reply
    • caregiving is a noble thing to do to people who needs loving tender care.

      Reply
  42. My aunt passed away at home less than a year after my grandmother passed away in a hospital and my uncle two days before that in a nursing home. So in less than a year I was able to experience the whole round of places. I’m glad my grandmother passed in the hospital. She hated the nursing home and we were all burnt out still from when she had been home with my aunt, mom, and I taking care of her. It was quiet, we weren’t doing the bulk of the care. My aunt passed so quickly after she was diagnosed with cancer and with hospice help, we were able to jump back into care mode that it was hopefully, peaceful for her. I still won’t sleep in that room though. Every time I think of maybe moving into that room, I see her last breath and so it won’t ever be a bedroom while I live here. I turned it into an office/craft room. My uncle was a people person and loved being where he had people to talk to when he wanted. Although my family and I despised the nursing home (not the staff, but the building itself. It was very run down and oppressive feeling) we’re pretty sure he was happier there than he would have been at the hospital or our home.

    Reply
  43. Hits home with me. For me, it was my brother in my home.

    Reply
  44. I’m grateful for all the time my husband and I have had. 17 years of MS caregiving, 8 years of that he has been bedridden, and the last 2 of those 17 years, he has been on hospice at home.

    It’s not easy. Not always comfortable…. but I’m so glad I could be here for him in this way. “Til death do us part.”

    Reply
    • Paula I understand your situation! My husband has muscular dystrophy. He was able to continue to work with the help of friends at work until 2015. However he needed me to bath him, dress him & get him into his chair for about 15 years. He’s now bed bound, he’s been on hospice care for two years next month.
      It is so hard. I have very little family assistance. I think because I’ve cared for him for so long, family doesn’t understand how much things have changed.

      Reply
    • Sheryl Chauvin it is exhausting. Bed baths, bowel programs, Supra pubic cath, quadriplegia due to advanced MS, cognitive issues. The list goes on.

      If it weren’t for our adult children and some very dear close friends, I wouldn’t be able to keep him at home.

      Hospice is great in that we no longer have to go to the hospital for treatment. He is so over being poked and messed with.

      The difficult part is that most people assume we “have a lot of help”. Hospice workers, whether aides or nurses, are only here 3-4 hours a week. I still do it all!

      Hospice is great but it’s still a lot of work.

      But I would do it, again and again, for him.

      So sorry for your situation. I do understand the pain of it all. Hugs.

      Reply
  45. I’m a daughter. I’m also a caregiver. Out of 7 children, I was the one who took care of mom for 20 years before her death. From cancer. At home. Like she wished. Had I known then what I know now, I honestly would have put her in a skilled nursing facility, even though it was about 30 minutes away. My brother came from out-of-state for her final 2 weeks-and don’t get me wrong, I was VERY appreciative-but I felt flooded with relief when we had to send her to the Hospice Hospital by ambulance on Christmas day. I was worn out. I needed rest, but followed the ambulance down anyway. It was also my granddaughters first Christmas. I missed most of it while I waited for mom to be settled in her room. She had a lung tap that night, and rallied. I was secretly hoping she’d pass during the week she was there, but she rallied more, and came home New Year’s Eve. My brother and I took care of her round-the-clock, but at least I got to go home for a few hours of sleep at night. The morning of the day she died, she started bleeding internally, and my brother panicked. I called the Hospice nurse, who came out and examined her and said her body was shutting down. Another brother and his family came from out-of-town, and our pastor came and stayed for several hours. It.Was.Grueling. Faft forward from 1999 to 2011. I now have a terminally ill uncle living with us. Once again, I’m the ONLY caregiver. I promised him I’d keep him home for as long as possible. When he fell more times than I could lift, I told him I had NO choice but to put him in a SNF. Bless his heart, he totally understood. Called hospice and they arranged it, and about 2 hours later he was being settled in his room. He rallied for 9 days before he passed-IN the SNF. He was happy and alert, and loving. Last time I left, I told him I loved him, gave him a hug, and headed home. 48 hours later he was gone. I’m not sorry I chose the SNF. There comes a point when a caregiver has to put themself first for a change.

    Reply
    • Thank you for this post. Gives me hope there are some who understand. Only child of 90 yr old parents. Zero help. No dollars for help. I need to work full time and it’s the only part of me left. 27 years. I realized I need help and they are going to need SNF . I just truly can’t go it alone.

      Reply
    • the falling is hard. That’s where we are at now. And I cannot lift him so it’s really going to just get worse from here on in. I want what’s best for him, but also what’s best for the rest of the family. I’m only 28, my daughter is 6. We need to live too

      Reply
    • Jacqueline Ann I’m SO sorry for your situation. Please get whatever help you can get for them. You’re a rock star! But you can only do so much. It’s easy to get overwhelmed and burnt out. You need to take care of YOU too. Easier said than done. I totally understand. God bless you. ❤️

      Reply
    • Georgia Cure HD Porter totally get it. I was about your age when I started taking care of my
      Mom. You’re part of the ‘sandwich’ generation like I was, trying to care for a family
      member while raising your own family. It’s SO hard. But remember that you can only do so much. I’m hoping the rest of your family can help. If not, a facility may be an option. Take care of YOU too. You need to be there for your little one. Blessings to you! ❤️

      Reply
  46. You are very right. In theory the “dying at home” makes sense. Unless there are numerous family members on rotation to provide care, it becomes a treadmill you are happy to walk but there is NO QUESTION it deprives you of quality compassionate time with your loved one.

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  47. “It may take a village to raise a child, but you may discover a ghost town when it comes to the dying.” Wow….. profound.

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  48. Well said! You just feel so helpless and hindsight is 20/20! Blessings on all caregivers doing the best they can!!!!

    Reply
    • My sister is in at home hospice. Her husband is her primary caregiver and I am 2nd in line. The problem is I am primary caregiver for my 91 year old mother. She is in assisted living and I have hired a cna to come out 7 days a week during the day. I cannot be two places at once. Plus I am married with family too. My sister lives an hour away from me. She is extremely angry at her husband and questions everything he does. I just don’t see how this is going to work. I can and want to help him, but don’t think it will be enough. My sister has had terminal cancer for 15 months and only has maybe a month left. I believe in the long run it will be better for her to die at the Hospice facility. Her husband is already burned out. Being at the facility we can tend to her personal and emotional needs while the professionals keep her meds stable. Have not approached this with my sister. The at home hospice team keeps telling her it is her decision. Me thinks it is not only her decision.

      Reply
  49. comment submitted earlier. So glad I found this site.

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  50. Thank you for sharing your experience of having a parent pass at home. My Dad’s been in the hospital for the last two weeks with very advanced Parkinson’s and is awaiting a bed in palliative care. He sleeps most of the time due to the advanced nature of his disease, but woke up today to tell my Mom and I that he wants to go home to die.

    We told his palliative Doctor of his wishes, and she and my mom decided it would be best for him to stay hospitalized, where he can receive round the clock care.

    My mom and I don’t have any medical experience whatsoever, so my mom was afraid about taking on that sort of responsibility at such an important time. I hope we made the decision that’s truly best for Dad. I feel very torn that we aren’t granting Dad his wish, but after hearing a story about at home palliative care, I guess both options have their positives and their drawbacks.

    My thoughts go out to all of us struggling with these end of life care decisions.

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  51. God bless you for writing this – it helped shed some light on this big decision. Thank you. May God bless anyone dealing with this.

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  52. And don’t die at night if your country does not have a 24-hour service for that. I (not a qualified health professional) was alone with my wife when she died at around 1am. I had to pronounce her dead, call the undertakers, and they took her body away at about 8am. The first time a doctor saw her and confirmed her death was 2pm that day (13+ hours after she had died). And this is not in some backwater in the last century – this is in a central European country, just last month.

    The hospice people, however, were extremely helpful and kind,

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  53. I was blessed to be my mother in law’s caregiver for the last four months of her life. She had bladder cancer and choose not to have any treatment for it, she was 84 years old. She passed three days prior to her birthday and she told us she was spending her birthday in heaven.I had no experience with being around a person that was dying at home in my 59 years. I read a book called One Foot in Heaven and it prepared me for what to expect and what to look for. When all was said and done our hospice nurse turned to me and said ” you done marvelous,dear” . I know I gave mom the best of me at that point and I will be there for my father in-law if it is to be. Right now I am his 24/7 caregiver, he has first stages of dementia, angina and MDS. But he’s doing well at the moment. God Bless.

    Reply
  54. When hospice at home is done right it is a help to people who want to be at home. One hospice should train and support the family with educateing the family how to do it. second of all I think all hospice should provide continuous care during the actual dying processs which can last one day or two to several weeks. people ofyen go months before passing. If the one you choose hire some private4 staff from the nearby facilty,church ect that know how to help. I have been on both sides of the fence the caregiver for my mom and dad,also I thave taken care of people in their last days to o her people. The reality is people are going to die but if is within all our powers to help make it the best possible experience for all depends on how we think about death and dying.

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  55. My lady, partner of 20+ years, passed in hospital. I had the MPoA for her and after discussion, both of us agreed. It was time for palliative care. Folks, before it is required, get the approval of your mate, partner, or parent. You must have at the least a Medical Power of Attorney filed and notarized
    . I had a copy in the car for the last 8 years. The offices that didn’t see it before made a copy. When the local hospital changed computer systems, they got a new copy.

    Reply
    • Such a good idea! It’s scary to think that if you don’t have a copy on hand when you need it, you may as well not have it at all. I’ve given copies to both sets of parents and keep a scanned copy in my phone, too.

      Reply
  56. I was my dad’s caretaker for five weeks last summer, and was totally unprepared for the amount of responsibility I had to take on in terms of his medical care. When I arrived (I live in another state) I was shocked to learn that the hospice nurse would only be coming by once a week, for an hour. Even in the last week of his life, she would only come more often if there was an emergency.

    Because of my dad’s condition, he could never be left alone, so I could not leave the house unless I arranged for a neighbor to come over and keep an eye on him. (It was a 45-minute drive for my sister, and she was working 70 hours/week.)

    As Dad declined, he would somehow get out of bed in the middle of the night, and I’d find him on the floor, or urinating on himself in the bathroom, and I’d be left to try and get him back into bed by myself. Once a hospital bed was brought in, with side rails, I had to watch him writhe as the nurse put in his catheter, and once she left, untangle him from the hose when he wrapped himself up in it trying to escape his confinement. How is someone with no medical training or experience expected to deal with all this, while watching someone they love die by degrees each day?

    My dad wanted to die at home, but his final days were not peaceful. There are images in my head that haunt me to this day, and I feel a huge amount of guilt that I was not able to handle things better at the end.

    I do not regret being there to care for my dad, he was a wonderful person, but in my case, the hospice experience was tremendously stressful and difficult, and I am still feeling the effects.

    Reply
    • I’m so sorry to hear about your experience. That sounds like an incredibly overwhelming, difficult thing to go through — on top of the terrible experience of losing a parent. Caregiver guilt is very common, but you know that you did your best and followed your father’s wishes.

      Reply
  57. I will try to put in words what I am feeling and with all my heart I hope they come out as I intend them. the greatest gift another person may give u after giving us life is allowing us to travel with them on the transitional journey to death. It is so personal and the dying are so like a new born. Vulnerable without shame or embarassment, So needy for a gentle touch a caring word , solace and reassurance.
    to expect just one person in a family or just one person to be all do all is as crazy as a single mom exhausted from sleep deprivation, with little resources, managing day after day night after night with a crying, nursing, needy little human. And so it does take a village. If you belong to a church, a social group, live near a hospital, ask for help, even one hour every day can make a world of difference, and not so you can go out but so you can do those very things you mention Joy.
    I have been a support person twice for loved ones, not the spouse and not the next of kin, but someone who loved them, in one ase I went each Friday, cleaned did laundry while his wife sat with him, later she would take a hot bath go for a walk, and I would sit and read or just visit with him.
    the second I went on Sunday and long after he was able to let me know he knew I was there , I sat and read aloud or softly sang or just breathed peace as I was able.

    There is a wonderful book, titled The Tibetan Book on Living and Dying I didnt find it until after my own mother died, but unknowingly I did much of what it suggests. I was ready when my dad died, book in hand I traveled the three thousand miles, only to get the call on my cell as I was picking up my luggage that he had just taken his last breath.

    I was with my mom, for only two short days with my dad not at all, I would give anything if I could have changed a diaper, gone without sleep, coaxed food into them. Just as the purest acts of love, but I know and would never expect to do it all on my own.

    if need be you beg, plead cry for friends, other family to come help, it is too much for one heart, soul body to manage and I am so sorry you did not have that village to help you.

    Blessings

    Reply
  58. Joy, just like you I am an only child and sadly I could not be with my father who was in a hospice facility when he died because I was taking care of my mother who had Alzheimer’s and died six weeks after my father. I would have wanted so much to be with him, but I have taken the view of ‘It is what it is.’ He understood. He knew my predicament. Our hospice experience was very good, but thank you for bringing awareness to what might be lacking in more rural areas. And you are right, sometimes at the end the location/situation might not matter much. For me I hope to live the best life I can, and at my end I hope it will be brief, and I’ll deal with whatever it is…

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  59. Thanks for writing and sharing this heart-felt article. Long ago, when I was writing a book about the history of advice for mothers, I remember reading that for the poor, a home birth can mean giving birth among cockroaches and rats, with screaming children all around. The statement stopped me in my tracks and made me rethink some of my assumptions (like home=good and hospital=bad in terms of birthing). Though your situation was not one of poverty, it was like what many people find themselves in – alone and responsible and not being sure what to do. In my ideal world, people would have access to a range of options – 24/7 care at home, an in-patient residential hospice, hospital care. In Canada we have universal medicare (for free) and that makes a big difference. But we still don’t have enough hospice palliative care.
    Your article helps to open people’s eyes to how great the needs are. Thank you. Katherine

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  60. I shall do a rebuttal blog to this. My wife died at home and it was nothing like described in this article. I left a detailed reply but apparently it timed out. So a blog it shall be.

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  61. My dad just passed in much the same way your mom did, and our experiences are identical. Thank you for voicing what needs to be said and what I’ve been feeling for the last 6 weeks.

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  62. My experience was much like yours. While the hospice nurses and aides were very good, they were not there much at all. The aide came in M-W-F for about an hour and the nurse came in once a week for about an hour. That left lots of time where me and my family had to do the dirty work.

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  63. Hospice can be a wonderful experience. Hospice does not provide provide care 24/7 but teaches the caregiver how to provide care. Hospice offers assistance. answer questions, makes regular visits and makes vists at any time of the day or night in times of uncertainity. Some folks are just not met to be caregivers and the experience turns out not to be a good one for caregiver or patient. Not being able to handle the caregiver situation is not something to be ashamed of, there are a lot of folks that just aren’t cut out to do it and then it falls to them to figure out an alternate situation. I took care of my mother and dad, each on hospice at different times. It is very difficult to be the lone caregiver, but in my situation it worked better for me and I would do it again. I know many many folks who have been caregivers while their loved one’s are dying and it has been a satisfying experience. Noone should be ashamed if being a caregiver at home is not their
    “cup of tea”., but it is a good experience for many patient’s and families.

    Reply
    • When there is only one person to be the caregiver, it is a tremendous responsibility with particular stresses. We owe it to these people to assure hospice care providers are able to provide more hours of help than with those who have more who can share the care. A caregiver needs to eat and sleep to be able to do the job. I would be hesitant to call hospice “wonderful”, but it certainly beats institutional settings for multiple reasons. Caregivers do not expect to be trained to provide care typically provided by professionals. They are thrown into an unexpected role and feel like they have failed if they don’t do it well. It’s great that it worked out so well for you.

      Reply
  64. Thank you for your candid posts on hospice. My experience was so similar to what you expressed. I definitely would have done it differently. Maybe it was the agency……….encountered difficulty with staff, supplies and genuine care.

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  65. Wow that was an eye opener and so honest. You made me cry. The tough decisions we have to make is so unfair sometimes. But your right it would have been nice to do all those things she loved one last time. I will remember this when it comes time for my hubby suffering from the dreaded disease of alzheimers. I try to make him happy on a daily basis and will continue until I can’t Charlotte

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  66. This is a dialogue that is very important to have.. We who have experienced Hospice at home or in a Hospice home know what the experience was like ..

    The more we discuss it the better it will get.. I agree with being able to spend those last days with a loved one , making them comfortable and holding their hand and spending those last days free of the medical side of what needs to be done..

    Joy, your last two sentences were riveting .. And true in too many cases..

    My mom passed away in a Hospice House and all the volunteers and nurses were wonderful.. I never was asked to do anything other than just be there with my mom and see if there was anything she wanted .. They were Angels..
    My aunt passed away at the same Hospice House and it was the same experience…

    I was exausted from being a caregiver and the drive back and forth and the nights spent on the sofa in the Hospice House but I was able to be a daughter and a niece in the last days .. Hospice took care of me and my needs too.

    My dad passed away in the ER which was a different experience to say the least.. He did not want to be resuscitated , and luckily his doctor was there to let staff know that .. It was hectic for us but my dad was peaceful when he took his last breath..

    My mother in law passed away with Hospice in a nursing home.. Hospice took care of everything .. We were able to just be there for her as we had been for many months.

    I am a caregiver for my husband who has many health issues and we have discussed with his doctor the many issues we would face with regard to resuscitation etc,

    Right now my husband is at home and doing pretty well ..

    Bless you all for caring and doing the wonderful job you are doing

    Take care
    Theresa

    Reply
  67. Thank you …I went through the same with my mother -in-law…She was a wonderful lady…

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  68. I will say that our experience with home hospice care was not a good one. Mind you this was back in 1995. The RN was wonderful, but she was only there 2 hours a week. The aide who came each morning to give my father-in-law a bath was inexperienced and was there for one hour or less. Other than that my mother-in-law and I were on our own. Respite volunteers and a social worker were available, we saw them once or twice. My mother-in-law and I were so busy changing his diaper every 30 minutes,flushing catheter, inserting morphine suppositories, changing oxygen tanks, keeping him from climbing over bed rails, well, quality time was nonexistent We were exhausted. We now have a beautiful hospice facility in our town, with a waiting list. If we need hospice care again we will attempt to use the facility.

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  69. Thank you Joy for sharing this. I am currently trying to be there for my husband, in a skilled nursing facility, since his last stroke 7 months ago. I have seriously been considering bring him home for this reason, exactly. I am sorry for your loss.

    Reply
  70. I don’t know what home Hospice care you had but… I was there with my dad when he died. He had been in home Hospice care for a while too. They administered the meds, changed his diaper, didn’t even allow him to GET bedsores, they bathed him, changed his clothes, and on & on & on…..

    Just because you had a crappy Hospice care doesn’t mean it’s ALL crappy Hospice care. Dad wanted to die at home. WE wanted him to die at home. We were comfortable in our own furniture, in comfortable surroundings. We weren’t disturbed by heart monitors or pages on an intercom or interns coming in. Medications & food was on OUR schedule, not the Hospitals. Hospice is also not constrained by allowing only “so much” morphine. If they dying patient gets high, oh well.. he’s high. Hospitals won’t do that. If we wanted to step outside we didn’t have to get into an elevator, we walked right out the door. There were no limits to visitors & no visiting hours. People came when they wanted, within reason. Maybe not at 3:00 am but they sure as heck were there at 8:00 am with coffee & fresh baked goods to ensure mom & I ate. We knew the nurses & liked them. We knew the names of their kids, where they went on vacation, their hopes & dreams & fears & we knew theirs. None of this would have happened at a hospital.

    I’m sorry you had a crappy experience but most people’s experience with Hospice is positive.

    Reply
    • I am glad your family had a positive hospice experience. The essay is not intended to be anti-hospice or pro-hospital. That’s a completely personal choice. I admire the work hospice care workers do, and the compassionate care they provide. I believe the overworked and understaffed home hospice companies in some rural areas is not an issue that is discussed often, and that’s why I wanted to share my experience.

      Reply
  71. I agree with everything you said. I am at that edge now. Not knowing which way to go with my decision.

    Reply
  72. I’ve done hospice at my hospital for 21 years. I love it, I will gladly do the nursing side of this process so you can spend every single moment giving all the love back to the person who is passing.

    Reply
  73. I think it’s a very individual experience that probably mostly depends on the quality of the hospice you’re participating with, as well as the patient’s wishes. The hospice my husband (who died in April) and I used was so wonderful that the people who arrived at our door were truly angels on earth. (And I’m not the religious type!) I don’t know what we would have done without them. Although I still did a lot of the caregiving, I tried (not at all perfectly) to make sure he also had some “fun” moments, humor, and dignity. He didn’t get to go outside (he didn’t want to), but was able to look out our home’s sliding window at the soft snowflakes, the birds and trees. He smiled until the moment he died.

    Reply
    • “He smiled until the moment he died.” I love that Lisa, and I am glad hospice was able to help you provide that loving care.

      Reply
  74. Thanks for this. I know I will be dealing with this soon with my parents. It helped me, so thank you for posting.

    Reply
  75. I hesitate commenting on this topic but I feel I must. I understand this is a hugely personal issue. All of us have our own frame of reference. So, with absolute and full respect for you Joy, if the “dying at home” thing is upsetting (beyond the obvious) for any caregivers then something went horribly wrong.

    I am so sorry your dad’s passing at home was not a good one, Joy. Losing a dad is horrific and the way they leave us is forever imprinted in our mind.

    Doctors and caregivers must work together up to and including the last breath. Regardless of the the stage in the disease process, when the doctor-patient-caregiver team breaks down, the results are horrific.

    My prayers up for you, Joy. Thank you so much for sharing your experience. In your painful experience, I hope the process of dying can be made more tolerable.

    Reply
    • Her dad didn’t pass at home.. she said it was a facility almost 200 miles away from home.

      Reply

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