Tag Archives: 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

holding hands

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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‘Home is still a hard place to die’

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Truthseeker08/Pixabay

I was interviewed for a series running on Nashville Public Radio called, “The Cost of Dying.” My interview is featured in the segment, “Home is Still a Hard Place to Die.”

I am grateful to Blake Farmer for reporting on the cost and challenges of end-of-life care. It’s a topic that is not discussed enough, until one finds themselves dealing with death in their own family.

Farmer took note of my essay, “Dying at home is not all it’s cracked up to be,” which appeared in my essay collection, The Reluctant Caregiver. That essay sparked a lot of debate on social media, because it revealed that there is another side to the aging-dying at home trend, and it’s not pretty. It’s one that family members often silently suffer through, because they feel guilty if they complain.

As it’s made clear in the Nashville Public Radio report, I am not anti-hospice by any means, and I know there are wonderful people who work in the industry. It is not a job I could imagine doing, and I think it takes a special kind of person to care for the dying and their families on a daily basis. But especially in rural areas, there are simply not enough hospice and home hospice providers available. That means the care falls upon family members, which is what I experienced with my mother. It was one of the most difficult things I’ve ever done, and while I don’t regret caring for my dying mother, I wish I had been better supported.

Farmer’s series places a spotlight on the challenges of dying at home, from interviews with family caregivers to an examination of the growing hospice industry. I encourage you to listen to the series and read the accompanying reports.

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How the dying teach empathy to today’s youths

While some may feel empathy is not something that needs to be taught, but is something that should come naturally to human beings, I do think people need opportunities to experience empathy.

A unique class for high school seniors in New York is doing just that. Simply called “hospice,” the students learn how to take care of the dying and a whole lot more.

hands

I was moved by the students’ experiences, and how they learned to cater to the resident’s needs, both physical and emotional.As anyone knows who has cared for a dying person, it is usually the smallest of actions that mean the most. A student helps a woman who was a speech pathologist but now ironically battles frontal lobe syndrome do a word puzzle. Another student rook time to read a memoir that a resident had written about his life, to get to know him better.

Sometimes the students experience death, up close and personal. It even hits close to home sometimes, as one student enrolled in the class has to deal with her dying grandmother who has been admitted to hospice.

The students shared what they gained from this most unusual of courses. They liked the fact that it was non-competitive, and it was a reality check that we are all going to die someday. Another student liked the class because it wasn’t competitive like most of his other courses; it’s simply about helping other people.

While I say kudos to The Harley School for maintaining such a course, and there may be similar classes elsewhere, I would like to see this become a more widespread movement. We’ve heard about the “scared straight” classes that send troubled teens to the morgue, and while that may shock some into choosing a better path in life, I think being around those who are one step away from death is far more valuable.

 

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My essay about dying at home posted on The Caregiver Space

I’ve been reading posts on The Caregiver Space for quite some time, but never had time to submit my own writing.

Now that I find myself in a post-caregiving phase of my life, I’m really trying to focus on writing a series of essays that have been stewing in my brain for awhile.

hospital bed

Last week, The Caregiver Space published my essay, “Why dying at home is not all it’s cracked up to be” and the reception has been quite positive. The post was published on The Caregiver Space Facebook page where it generated several hundred likes and many heartfelt comments.

The essay is not an attack on hospice care workers; I admire most of them and think they do a phenomenal job. Hospice care is truly a calling in my opinion, and one can see the benefit of the loving, compassionate care they provide.

My essay is a look at dying at home vs. dying in a facility from the family caregiver’s perspective. After my dad died in a skilled nursing facility, I was all for my mother dying at home. But the reality was a bit different. It was an emotionally brutal experience that I wouldn’t wish on my worst enemy. That’s not to say that her death would have necessarily been better in a hospital, it would have been difficult in a different way.

My main point of the essay is to bring awareness to family caregivers in rural areas. They may find that the local home hospice agency is understaffed and overworked, and cannot provide the around-the-clock care that is often touted by die-at-home advocates. People should be aware and prepare themselves for taking on more of the nursing duties of caregiving. If they feel they cannot do it themselves, they should seek out help from family, friends or professional caregivers.

If you have the time, please read the essay and let me know what you think. Also, please share with anyone who you think could benefit from the information.

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Playing the waiting game with Death

My mother’s health took a big turn for the worse this week.

The hospice nurse expects her to pass in days, maybe a week, though her heart is very strong, so she could last longer.

Mother's Day

Mother’s Day

For her sake, and mine, I hope that the suffering is not prolonged.

She is now totally bedridden, somewhat delirious and a new pain complaint has popped up the last two days. She now complains of severe head and neck pain. The nurse cannot figure out what may be causing it. It is unlikely that the colon cancer, if it has returned, spread to her brain, though it is a possibility.

But the morphine is not really touching the head pain, even when dosed hourly. She is so “zonked out” by the pain meds yet still is pointing to her head and grimacing. That is tough to watch.

Mom’s face has been taken over by that ghoulish death mask. Her eyes are starting to look beyond.

But her heart continues to beat hard and strong in her emaciated chest.

In one of her lucid moments, my mother asked what had happened to her. And to that, I had no good answer.

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Being the ‘angry advocate’ is sometimes necessary

I don’t like conflict. I like things to run smoothly and everyone to do their job. This is especially true during a crisis.

Of course, it is in these tough situations that conflicts and issues often arise.

Ironic door sign

I found out yesterday that after waiting over a week for hospice to begin, with my mom reporting an 8 out of 10 on the pain scale during every home health visit, that the hospice transition process had not even started! The home health agency told me I needed to talk to my mother’s primary care physician. But last week, when I was at the doctor’s office, I asked about starting hospice and the doctor’s staff told me the home health agency needed to fax them paperwork.

I was beyond frustrated. I don’t get angry very often but I was really furious. My mom had suffered needlessly for over a week because these two entities that work with each other all the time can’t get their acts together?

Since the local home health agency is now part of a larger corporation, I filed a complaint at the corporate level. I don’t generally like to throw people under the bus but I wanted action.

And it worked. Tomorrow a staff member is coming to transition Mom to home hospice.

I just wish I had been the angry advocate sooner.

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