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.

2 Comments

Filed under Awareness & Activism

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!

1 Comment

Filed under Awareness & Activism

National Caregiver Appreciation Month eBook Sale & Giveaway

alzauthors giveaway 112019

I can’t believe it’s this time of the year already, but November is National Caregiver Appreciation Month.

Supporting caregivers is one of the issues I’m most passionate about. Having been a family caregiver for my parents, I know how tough it can be. So I’m always happy to participate in the  annual National Caregiver Appreciation Month eBook Sale & Giveaway hosted by AlzAuthors. All books will be discounted from Nov. 21-25, with many books priced at 99 cents and some books will be available for free. You can get my award-winning book, The Reluctant Caregiver, for just 99 cents.

AlzAuthors is a group of more than 200 authors and bloggers who write on the topics of Alzheimer’s and other dementias. Many of the authors are family caregivers. I’ve seen this group grow and participate in many wonderful events over the years, and I’m honored to be a member.

In addition to books, AlzAuthors has a fundraiser going on through Nov. 25. Buy a cozy fleece jacket with the lovely AlzAuthors logo for just $44.99. These would make great holiday gifts for the caregiver in your life! All proceeds will support the continued outreach of AlzAuthors.

Leave a comment

Filed under Awareness & Activism

Continuing care at home: Pricey but intriguing elder care option

hand-2906458_1920

Photo: Pixabay

I’m always on the lookout for nontraditional elder care options. As we face a growing elder population, we are going to need some out of the box thinking and smart innovation to meet the high demand for elder care and elder-friendly housing.

A recent New York Times article highlighted one such option: continuing care at-home, an offshoot of the more well-known continuing care retirement communities. The NYT refers to the at-home option as a CCRC without walls. The goal is to keep people living comfortably and safely in their homes for as long as possible and for as long as the person desires, but with the option to move into assisted living if needed.

Instead of moving into an independent living apartment on a CCRC campus, people remain at home. Members are assigned a “care navigator” who monitors their health daily living needs. This hybrid aging at home with the option for supportive home care services and residential care could be attractive to baby boomers.

However, there are some downsides. The main one is cost. While the at-home version of the CCRC is cheaper than the traditional format, it’s still requires a hefty entrance fee (typically tens of thousands of dollars) plus monthly fees. In many cases, elders sell their home and move into more affordable housing in order to cover the costs. This is not a financial option for everyone.

There are also medical requirements to enter such programs, with a dementia or Parkinson’s diagnosis, among others being disqualifiers.

So it’s not for everyone, but it could be a good compromise for those who can afford it and want to remain in their homes as long as possible.

2 Comments

Filed under Awareness & Activism

Looting the elderly via CRAIN’S COMMENTS

In my line of work I read about so many cases involving criminals preying upon the elder population. Those with dementia are particularly vulnerable. As family caregivers, be vigilant upon checking bills, bank statements, etc. There’s a fine line between allowing your elder loved one to maintain their independence and protecting them from criminals, but it’s important to be aware.


IN 2017, financial institutions filed 63,500 inquiries regarding suspected fraudulent activities involving senior clients. That’s up 400% over 2013, and may still represent 2% or less of actual crimes. Traditionally, the elderly have been victims of their own family and care-givers. Now there are concerns that they are being victimized by financial professionals they trust, […]

via Looting the elderly — CRAIN’S COMMENTS

Leave a comment

November 9, 2019 · 10:15 am

‘Home is still a hard place to die’

hospice-1794418_640_edited

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.

Leave a comment

Filed under Awareness & Activism

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

Leave a comment

October 24, 2019 · 6:02 pm