Monthly Archives: December 2019

Caregiving goals for a new decade

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Gerhard Gellinger/Pixabay

A new decade is upon us. It’s hard to believe that we are about to begin not only a new year, but a new decade.

Caregiver advocacy will remain a focus of mine, because there is so much work that remains to be done. We’ve definitely made some progress over the last 10 years, but here are the main areas I’d like to see positive movement in over the next 10 years.

Respite care: Caregivers need regular breaks, plain and simple. Sadly, many caregivers never get a break, leading to burnout and increasing their risk of becoming ill and needing care. We need to break that vicious cycle, but there are no easy answers. Respite care requires care providers and facilities that can step in and care for a loved one while the caregiver takes a break. Many communities lack such services or have very limited services. I’d like to see more funding, at the federal and state level, and some innovation in this area to bridge the care gaps and give caregivers the breaks they so deserve.

Support in the workplace: Caregivers are hard workers, but the time they may need to take away from their job in order to care for loved ones puts their careers at risk. It shouldn’t be this way. Not all jobs can be done remotely, but for those that can, employers need to dedicate resources and support teleworking for caregivers. Alternative schedules and flexible schedules is also essential in the modern workplace. We need to allow caregivers to earn a living and provide care for their loved ones. Universal family care would address many of these issues. No one should have to quit their job to become a family caregiver.

Effective Alzheimer’s treatment: There have been several disappointments over the last decade when it comes to drug trials that once held great promise in treating Alzheimer’s. Most have failed or underperformed. There is a threat that pharmaceutical companies may turn their focus to other diseases that may be easier to crack. But there are many bright minds in the scientific community who are dedicated to the cause. I won’t be so overly optimistic to hope for a cure, though that would be the best news of all. A treatment that could delay the most severe symptoms would be welcomed.

Better end-of-life care: If the previous decade has been about aging in place, the new decade should focus on how we are going to support end-of-life care, especially those who choose to die at home. From pain management to respite care to a lack of home hospice care in rural areas, we are not delivering the “good death”  that we are capable of as a society.

I wish you and your family a happy new year and hope this will be the beginning of a decade where we all can thrive and develop a more compassionate society.

 

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Grief at the holidays

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Whenever I learn of someone’s passing during the holiday season, I feel an extra pang of sympathy. Losing a loved one at any time of the year is devastating, of course. But there is something about loss during a period of such joy for others that is particularly painful.

Today it has been eight years since my father’s death. So much has happened since then, yet it’s still hard to believe that it has been so long since his passing. I remember how odd the Christmas decorations and Christmas music blaring everywhere seemed to be after I learned the news of my father’s passing. It’s a tough lesson to learn in such a fragile state: the world goes on without your loved one.

If you find yourself grieving this holiday season, cut yourself some slack. Don’t feel obligated to put on a happy front. There are many others just like you who feel conflicted emotions during this time of year. Hopefully over time, some happier memories will filter in through the grief. If you know someone who has lost someone during the holidays, reach out to them and offer your support.

I hope you and your loved ones have a holiday filled with peace and love.

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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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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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