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

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hospital bed

 

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.

About author

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.

32 comments

  1. jodigirl1000 20 July, 2015 at 19:07 Reply

    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.

  2. Kathy 20 July, 2015 at 21:12 Reply

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

  3. Lisa Ames 20 July, 2015 at 23:37 Reply

    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.

    • Joy Johnston 25 July, 2015 at 23:03 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.

  4. m 21 July, 2015 at 12:32 Reply

    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.

  5. b.engbrock 21 July, 2015 at 21:04 Reply

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

  6. Michelle 21 July, 2015 at 21:11 Reply

    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.

    • Joy Johnston 25 July, 2015 at 23:01 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.

  7. Dee 21 July, 2015 at 23:28 Reply

    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.

  8. Karen 23 July, 2015 at 11:30 Reply

    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.

  9. Theresa Loder 27 July, 2015 at 09:16 Reply

    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

  10. Charlotte 27 July, 2015 at 13:19 Reply

    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

  11. Susan 27 July, 2015 at 16:37 Reply

    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.

  12. Linda Wise 27 July, 2015 at 19:09 Reply

    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.

    • Robin Rosner 31 July, 2016 at 12:19 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.

  13. V 27 July, 2015 at 19:27 Reply

    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.

  14. Rhonda 27 July, 2015 at 20:18 Reply

    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.

  15. Bob Harrison 18 August, 2015 at 03:28 Reply

    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.

  16. Katherine 20 August, 2015 at 15:44 Reply

    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

  17. Paivi Kristiina Karna 20 August, 2015 at 18:07 Reply

    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…

  18. JoAnn Oram 21 August, 2015 at 00:26 Reply

    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

  19. T.L. 14 September, 2015 at 14:22 Reply

    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.

    • Cori Carl 14 September, 2015 at 18:28 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.

  20. Gregg McFarlan 31 July, 2016 at 01:33 Reply

    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.

    • Cori Carl 31 July, 2016 at 14:51 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.

  21. sue 31 July, 2016 at 10:13 Reply

    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.

  22. Ann 1 August, 2016 at 19:35 Reply

    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.

  23. K. 2 August, 2016 at 02:39 Reply

    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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