Category Archives: Awareness & Activism

Dementia and Dinner — When Dementia Knocks

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What we eat, and how we eat says a lot about who we are. If a loved one forgets to eat, add meals because they forgot they already ate, or start altering foods in strange ways, that may be a sign that it’s time to visit the doctor. In her recent blog post, Dr. Elaine Eshbaugh discusses common ways that dementia can alter a person’s dietary routine.

With my father, it meant he had an increased appetite, but sometimes forgot how to use utensils. Near the end of his life, he forgot how to swallow, which is a more complex action than people are aware of.

We eat to live. But food is more than fuel. Food has strong ties to family rituals, celebrations, and emotions. Food is love. I’m thinking of a time, over 15 years ago, when my long-term boyfriend dumped me like a bad habit. Food started arriving in the mail. My mom send Red Vines licorice. My […]

via Dementia and Dinner — When Dementia Knocks

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February 1, 2020 · 10:06 am

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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Bathroom Safety Tips For Seniors — The Diary of An Alzheimer’s Caregiver


Good tips! It’s so easy to overlook all of the alterations needed to keep an elder loved one, especially one with dementia, safe in the bathroom. My mother did not have dementia, but she fell and broke her shoulder while using the toilet in the middle of the night. She never fully recovered from that injury, and her mobility was limited because of it. Falls in the bathroom are all too common, so beware the risks and take action to keep your loved one safe.

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! A primary concern of senior citizens is whether they can continue to live independently as they get older. Their loved…

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January 16, 2020 · 4:36 pm

Caregiver shortage expected to grow, must address issue now

 

Hope everyone had a good holiday and that your new year is off to a good start.

The fact that there is a caregiver shortage is not new; however  a Quartz article posted this week has put the issue back on the national radar. The article cites the slowing population growth, along with increased longevity and a decrease in immigration among the issues that will potentially trigger a caregiving crisis. By 2030, that shortage may grow to more than 100,000 caregivers for the elderly, according to Quartz.

Here are some ways we could address this major healthcare issue:

  • Pay caregivers a livable wage: In order to recruit new generations into a caregiving career, we’re going to have to revamp the woefully inadequate pay scale. Professional caregivers deserve to have decent pay, benefits, and access to training and educational opportunities to grow in their fields. Caregiving should no longer be a job of last resort; it should be a career choice one takes pride in.
  • Immigration policies: We need a fair immigration policy that offers those interested in becoming U.S. citizens an opportunity for a stable career in a field with severe shortages. Too often, immigrants who become caregivers, especially those with questionable legal status, are taken advantage of and paid below minimum wage without benefits.
  • Offer incentives: Just like with geriatric or rural medicine, caregiving is not a “sexy” career choice. Certainly it can be rewarding, but in order to fill the large care gap we may need to get innovative. I’m a fan of the Care Corps concept, and a student loan forgiveness program in exchange for serving as a caregiver could attract candidates.
  • Offer better support for family caregivers: Realistically, the bulk of caregiving duties will likely continue to fall on family members. We need to support them better, by employers offering flexible work schedules and the government embracing universal family care. A tax credit would help some with the financial hit family caregivers suffer.

There is no easy fix, but we definitely need to keep pushing this topic into the general conversation and advocate for common-sense actions and programs to alleviate the caregiving shortage and burden on family members.

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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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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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