Tag Archives: caregivers

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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Recharging when you can’t take a vacation

For caregivers, taking a vacation is often a non-starter. Even if someone was to gift a caregiver a cruise or a resort stay, the effort it takes to find care for loved ones makes what should be a relaxing trip a stressful endeavor.

When I was researching options for Respite Care Share, I ran into that feedback time and time again. Who would watch my loved one? Even if I could find someone, I would worry about them the entire time I was gone.

Mini-breaks can really make a difference. I had last week off from work so I treated myself to a massage and a salt room treatment. I also visited a cat cafe, which always is a mood lifter. These were all short sessions, no longer than an hour, but they were effective self-care options.

 

So this holiday season, consider giving the caregiver in your life a local option for recharging. Some great options include gift certificates for a massage or other spa service, a restaurant gift card, or tickets to an entertainment event. As part of the gift, either offer to sit with the caregiver’s loved one, or find an adult day care or home health service that can provide care. The idea is to keep it short and simple and hassle-free for the caregiver. That way, they are more likely to use the gift and most importantly, enjoy themselves!

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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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What I Wished I Knew When Dementia Was Diagnosed: Anosognosia(#1) — Dealing with Dementia

I learned a new word (anosognosia) and one that is so important for families who may suspect their loved one has Alzheimer’s or another form of dementia. It can be one of the most frustrating aspects for family members dealing with this disease.

Your loved one with dementia may not be able to recognize that anything has changed with their thinking and behavior.

Read Kay’s blog post for details.

via What I Wished I Knew When Dementia Was Diagnosed: Anosognosia(#1) — Dealing with Dementia

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October 24, 2019 · 6:02 pm

Caregiving 101: Maintain Your Life While Maintaining Theirs — The Diary of An Alzheimer’s Caregiver

This is an excellent, detailed post for first-time caregivers. Please share with those who are embarking on a family caregiving experience.

Giving your time and resources to loved ones brings feelings of delight and satisfaction while also attracting emotions of a heavy burden. Becoming a caregiver can be an extraordinarily taxing responsibility for many individuals, and therefore should not be taken lightly …

Read full post via Caregiving 101: Maintain Your Life While Maintaining Theirs — The Diary of An Alzheimer’s Caregiver

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October 10, 2019 · 12:17 pm

4 Realistic Self-Care Strategies for Alzheimer’s Caregivers — The Diary of An Alzheimer’s Caregiver

It’s something we don’t talk enough about, but it is so important: self-care. I know that phrase has become a bit touchy in certain circles, because it can seem like you are dumping one more responsibility on an already overworked caregiver. The sad truth is that in most cases, no one is going to offer you a respite out of the blue. You have to know your limits as a caregiver, ask for help when needed and yes, take care and be kind to yourself.

Read these helpful self-care tips via the blog post below from The Diary of An Alzheimer’s Caregiver.

Sign up to get these posts and a whole lot more delivered right to your inbox! The Diary of An Alzheimer’s Caregiver – Appreciate the good, laugh at the crazy, and deal with the rest! Caregiving is hard no matter what. Alzheimer’s caregivers, however, have an especially difficult job. Not only do people with Alzheimer’s…

via 4 Realistic Self-Care Strategies for Alzheimer’s Caregivers — The Diary of An Alzheimer’s Caregiver

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August 23, 2019 · 5:27 pm

Falls are Game Changers for Older Adults

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This is such important information for family caregivers. To put it bluntly, a fall for a frail loved one can signal the beginning of the end. Both my mother and father experienced falls as their health situations declined. Learn more and tips on preventing falls from Kay Bransford.

via Falls are Game Changers for Older Adults

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August 9, 2019 · 8:50 pm