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

Courtesy of The Caregiver Space |By Joy Johnson | Originally posted 07.20.2015 | Published 10.16.2017

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.

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