Tag Archives: home hospice

Challenges of dying at home, revisited

This week, NPR aired Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families, the national version of a story that first appeared last year on Nashville’s NPR affiliate. I was interviewed for this series, and shared my personal challenges in tending to my dying mother at home.

This is such an important conversation for the nation to have and it is a cause near and dear to my heart. As I state in the story, I am not anti-hospice by any means. My father died in a facility and that was a horrible death. But caring for my mother who died at home had its own unique challenges. Both experiences scarred me for life, leaving me with regrets and with a mission to help other families avoid the mistakes my family made.

I encourage everyone to read and/or listen to this series and think about your own situation. Family caregivers need to be clear-eyed about the demands they may face in caring for a loved on at home at the end of life. It can be the most tender of bonding moments, a final act of love and sacrifice for a beloved family member. Knowing the pitfalls and identifying potential gaps in care ahead of time can help you from becoming overwhelmed and burned out.

Finally, for those who did not have a good experience with home hospice care, know that you are not alone and it’s not your fault. Forgive yourself for anything you may be blaming yourself for (I’m still working on this part.) Your loved one would want you to let go and move on, free of guilt.

 

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More Americans are dying at home, but family caregivers still lack support

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Image courtesy of Pixabay.

The New York Times published an article this week that touched on a subject close to my heart. The article explores the impact of new data published this week in the New England Journal of Medicine that found more Americans are dying at home than in hospitals.

On the face of it, this sounds like good news. In poll after poll, the majority of people say they would prefer to die at home rather than in a hospital or nursing home. The tide now appears to be turning, and perhaps returning to a culture which embraces providing end-of-life care at home.

But the major challenge, which I’m grateful to reporter Gina Kolata for highlighting in her report, is the following: “Many terminally ill patients wind up in the care of family members who may be wholly unprepared for the task.”

This is something I’ve written about extensively, based upon my own family caregiving experience. My personal essay, Why Dying at Home is Not All It’s Cracked Up to Be, ruffled some feathers at the time. But my point wasn’t to be anti-home hospice. I think home hospice can be a wonderful service. The problem is that there are not enough home hospice service providers, especially in rural areas of this country. As the New York Times article discusses, this leaves family caregivers carrying the heavy burden of providing medical care for a dying loved one, while dealing with the financial cost and emotional toll of that experience. Most family caregivers are woefully unprepared.

“We have put a tremendous burden on families in the type of care they have to provide and the type they have to pay for,” said Dr. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York.

With my parents, I experienced the worst of both kinds of deaths. My father died in a skilled nursing facility without any family members with him, and my mother died at home, with myself, the only child, providing her end-of-life care but lacking support from limited home health care services.

The New York Times article also discusses another downside of dying at home: pain management. My mother’s pain was not managed as well as it could’ve been in an institutional setting, and that will haunt me for the rest of my life. No one should have to suffer needlessly at the end of life.

If you want to learn more, I was interviewed recently on the challenges of dying at home by journalist Blake Farmer at WPLN, Nashville Public Radio.

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Family’s gift to caregiver an inspiring way to pay it forward

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Photo by Marius Muresan/Freeimages.

There was a wonderful story posted on CNN recently, and it reinforces the fact that there are still good people doing good things in this world, even as they faced difficult circumstances in a world that seems increasingly unkind.

The Wright family in Georgia hired a caregiver, RonTunDe Hector, to provide home hospice care for Judy Wright, who had Parkinson’s disease. After positive feedback from his father, Chris Wright, Judy’s son, arranged to meet RonTunDe in person.

As it turned out, they already knew each other.

Hector had been going through a rough time a few years before, and ran out of gas on the highway. As she walked down the road with her gas can, a man pulled up and asked if he could help. She explained the situation and the man filled up her tank and gave her $40.

That man was Chris Wright.

Though the pair were reuniting once again in the midst of difficult circumstances, the bond was strong. Hector even accurately predicted the day Judy Wright died.

After Judy’s death, the family wanted to honor Hector’s compassionate care and help her continue growing in her profession. The family raised funds to send Hector to nursing school, a dream she had long had but was unable to afford.

The online campaign has now raised over $33,000, funding by over 800 donors. The Wright family’s generous act will now help countless other people who will be cared for by Hector.

 

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