Category Archives: Awareness & Activism

November 20, 2023 · 8:00 am

Remembering Rosalynn Carter, dedicated caregiver advocate

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Former first lady Rosalynn Carter died Sunday at the age of 96.

Carter was well-known for her caregiver advocacy work. One of her most famous quotes sums up the universal importance of caregiving:

“There are only four kinds of people in the world—those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Rosalynn Carter,
Former First Lady of the United States

Carter, much like her husband, former President Jimmy Carter, didn’t just deliver speeches or donate money to caregiving causes. The Rosalynn Carter Institute for Caregivers was established in 1987. The Institute conducts important research on the impacts of caregiving and has launched programs like Working While Caring, which partners with employers to address the needs of their caregiver employees. The Institute also has programs dedicated to dementia and military caregivers.

The Carters were married for 77 years, a union that was a true and loving partnership.

For more on Carter’s long life dedicated to giving back to others, visit her tribute page.

The best way to honor her memory is to continue her mission, to create a society in which caregivers are supported and have the resources they need to thrive.

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November 13, 2023 · 8:00 am

Understanding a caregiver’s ‘quiet rage’

The New York Times published an article recently that shines a light on an important caregiving topic that is close to my heart.

The Quiet Rage of Caregivers features the stories of caregivers who faced difficult caregiving experiences. One caregiver profiled is writer Ann Brenoff, who wrote “Caregivers Are Mad as Hell! Rants From the Wife of the Very Sick Man in Room 5029.” I consider her a kindred spirit, having written about my own challenging caregiving experiences in my personal essay collection, “The Reluctant Caregiver.”

While anger and frustration are normal emotions to feel as a caregiver, society doesn’t tend to support caregivers expressing negative emotions. Instead, caregivers are judged for being selfish and not loving the ones they care for enough. This is especially true for female caregivers, who are expected to sacrifice career and other pursuits to embrace a role that they have historically been expected to fulfill.

Jennifer Levin, who runs a Facebook support group for millennial caregivers, summed up the conflicting emotions of caregivers: “A lot of caregivers are afraid to express their anger, because they feel guilty.”

I definitely experienced that uncomfortable mix of emotions when caring for my parents. Exhaustion of juggling a full-time job with caregiving duties, resentment, guilt for feeling resentful, frustration at the lack of support … and then I was expected to show gratitude and spin the experience into a positive?

I am grateful for Brenoff and others like myself who are speaking out for those still in the caregiving trenches, who feel powerless and in despair of what seems like a hopeless situation. The best way we can support caregivers is by making sure they have the resources they need so that caregiving becomes a manageable situation, not one in which the person feels like they are drowning each and every day.

Photo by Annie Spratt on Unsplash.

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November 6, 2023 · 8:00 am

Marking National Family Caregivers Month and National Alzheimer’s Month

November is both National Family Caregivers Month and National Alzheimer’s Month. The National Family Caregivers Month theme for 2023 per Caregiver Action Network is is #CaregiversConnect. Visit the CAN website for resources on how you can connect with other caregivers and caregiver support services.

In honor of National Alzheimer’s Month, I’d like to share a giveaway from AlzAuthors. During the month of November, while supplies last, you can receive a free audiobook, “Alzheimer’s and Dementia Caregiving Stories: 58 authors share their inspiring personal experiences” to those in the US and UK and a free copy of the e-book version, which is available to readers around the world. Visit the AlzAuthors website for more details.

I’d like to share this message from AlzAuthors in support of all caregivers. I know I struggled as a family caregiver by constantly being in doing mode. Respite can be difficult to secure and self-care is often relegated to a low priority, but even moments of pause can make a difference.

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October 30, 2023 · 8:00 am

‘Depression tiredness’ and caregivers

As we prepare to enter another holiday season, it’s important to note if you are exhibiting signs of depression and fatigue. This social post from the Academy of Grief calls it “depression tiredness.”

I experienced much of this list while caring for my parents. I thought the “pretending to be okay” entry and being tired from faking a smile all day was particularly notable for caregivers. Instinctively people may project an outward image of strength, but inside, we may be feeling something quite different.

It’s also important to note the small things one can do when they experience these emotions. Of course, seeking professional care is vital, but “small glimmers” can help one get through a difficult day. I’ve actually used all of these at one time another to ground myself or lift my spirits.

What would be your small glimmers?

Photo by Kristina Tripkovic on Unsplash

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October 23, 2023 · 8:00 am

Travel tips for caregivers

From my recent visit to Amsterdam.

I just got back from my first trip overseas since before the pandemic. Here are some observations I made that may be helpful for caregivers.

  • Verify that you and your loved ones have the required travel documents well before your international trip. Check the expiration date of your passport. If it is going to expire within 3-6 months of your trip dates, check to see if you’ll need to renew before your trip. Beginning in spring 2025, an additional authorization document will be required for US citizens traveling to Europe.
  • Mode of travel: If you are traveling overseas, you’ll probably be flying or taking a cruise. Trains are an option when traveling across Europe. There are pros and cons to each. It really depends upon the needs of those you care for and which mode of travel would be the most accommodating.
  • Medications and medical supplies: Make sure to clearly label medications to prevent issues during the security screening and if you have electronic medical supplies that require power, make sure to bring a country-specific outlet adaptor.
  • Accommodations: Make sure the accommodations you choose during your trip, whether a traditional hotel or an Airbnb, will be accessible for you and your loved ones.
  • Special diets: You can request special diet meals on flights. This can typically be done online, but check with your airline for more details. Bringing some favorite snacks can help put anxious loved ones more at ease. For those with a history of severe allergic reactions, bring an Epipen.
  • Public vs private transportation: Once you’ve arrived at your destination, if you plan on traveling in the region you’ll need to decide if public transportation is feasible or if would be more comfortable to hire a private care, if your budget allows. I dealt with significant rail issues during my recent trip which I was somewhat prepared for but do research how reliable public transit is in the area you will be visiting. Are you and your loved ones physically mobile? Keep in mind that walking is much more utilized as a form of personal transportation than in much of the US.
  • Be prepared for the unexpected: Travel delays, reservation issues, illness, etc. Try to include some flexibility in your travel schedule to allow for common travel issues.
  • If you or your loved one have a medical issue that you may need to seek care for while traveling, research care options near your destination. If you are visiting a country in which you can’t speak the language, do learn the phrases that could be of use to you in those situations.

Seeking more travel tips? Check out this guide from AARP and this Caregiver.com article that offers dementia caregivers specific trips on traveling safely with your loved ones.

Scenes from Amsterdam

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October 7, 2023 · 2:52 pm

Ageism Awareness Day

October 7 is Ageism Awareness Day. As caregivers, we see aging from a myriad of perspectives. While we no doubt see the physical and cognitive challenges that our loved ones contend with as they grow older, we also see the discrimination that older people, those who are disabled, and those with dementia face on a routine basis.

Ageism can be found in a variety of settings, from popular culture to the doctor’s office. According to the American Society on Aging, “Ageism is one of the most widespread and socially accepted form of
prejudice.”

Here are a few facts to know about ageism, courtesy of the American Society on Aging.

  • Ageism occurs in many forms, including Internalized, cultural, implicit and benevolent.
  • Older individuals with more positive self-perceptions of aging live 7.5 years longer than those with a less positive self perception of aging, according to one study.
  • Ageism in the workplace has many consequences. AARP estimated $850 billion in lost gains to the Gross Domestic Product (GDP) as a result of involuntary retirement underemployment, and unemployment among older workers.
  • In medicine, there is a shortage of geriatricians in the U.S. that will only worsen as the demand is set to skyrocket. Ageism can also be found in grant fund recipients for aging-related projects and clinical trial participants.

What can you do? Be vocal when you or your loved ones face ageism. Support efforts that seek to portray aging in a more realistic, less stereotypical manner. How can we as a society better support changing needs as we age?

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October 2, 2023 · 8:00 am

Don’t wait: Discuss end-of-life care wishes for those with dementia

The American Society on Aging, along with Compassion & Choices, hosted a webinar recently on honoring the end-of-life care wishes of those with dementia.

Also check out this interactive exhibit that discusses end of life care from a variety of individual perspectives.

This is an issue that I encourage everyone to consider, as my father’s end of life care was not what I wanted it to be. But without a roadmap (as is discussed in one of the videos above), my mother and I were forced to muddle through on our own. As I discussed in my book, The Reluctant Caregiver, my mother and I were at odds when it came to care options for my father as he neared the end of life. This is a common occurrence in families and can create regrets and guilt.

That’s why I suggest not waiting when it comes to discussing end-of-life care wishes after a dementia diagnosis. I also would like to point out that in the top video, honoring choices is the focus, but there are times when those wishes can’t be honored, for a variety of legitimate reasons. The ultimate goal is safety for your loved one and those caring for them.

Photo by Centre for Ageing Better on Unsplash.

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September 18, 2023 · 8:00 am

Marking World Alzheimer’s Month

September is World Alzheimer’s Month and this week on Sept. 21 will be World Alzheimer’s Day. This year’s theme is “Never too early, never too late,” with a focus on reducing the risk of Alzheimer’s by educating people on their own risk factors.

Alzheimer’s Disease International has many resources on its website, including a Dementia Fact Sheet.

While modest strides are being made in the development of medications to slow down the disease, it’s key that people understand their risk of developing Alzheimer’s and the steps they can take to reduce their risk.

Looking for ways to support the Alzheimer’s and dementia communities this month? Consider purchasing a copy of Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. It’s on sale at Amazon and includes a story I wrote about my father. Also check out my collection of personal essays, The Reluctant Caregiver, which includes further accounts of the impact dementia had on my family.

If you’d like to support an organization for World Alzheimer’s Month, consider purchasing an item from the AlzAuthors shop.

Image courtesy of Alzheimer’s Disease International.

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September 10, 2023 · 12:04 pm

Bob Barker: Alzheimer’s disease noted on death certificate

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Legendary “The Price is Right” game show host Bob Barker died Aug. 26. It was revealed last week that the cause of death per his death certificate was Alzheimer’s disease, according to NBC News. Barker was 99 years old and had suffered from serious falls in recent years but it’s unknown when he was diagnosed with Alzheimer’s disease.

Barker was one of those rare celebrities who was beloved by multiple generations. He was a mainstay of my childhood, especially before I started school and during school vacations. “The Price is Right” was my favorite game show. It was fun and exciting with the variety of games being played. The players being called out of the audience created memorable moments. Announcer Johnny Olsen (and later Rod Roddy ), the models, aka “Barker’s Beauties,” and Barker served as a second family for many kids from my generation. “Come on down!” was a catchphrase almost everyone knows, whether they were a fan of the show or not.

Watching “The Price is Right” also was my early introduction to animal rights, with Barker ending each show by reminding the audience to spay and neuter their pets. I may not have understood those terms as a child, but Barker over his long life devoted much time, effort, and money to improve the lives of animals. People has a good overview of Barkers animal rights advocacy work.

According to ET, the bulk of Barker’s estate will be donated to animal rights and military charities.

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August 28, 2023 · 8:00 am

GUIDE Model seeks to offer better support for dementia caregivers

Caregivers of loved ones with dementia face unique challenges. A new model from the Centers for Medicare & Medicaid Services, GUIDE, seeks to change that.

GUIDE stands for Guiding an Improved Dementia Experience, and the program will launch on July 1, 2024 and run for eight years in its initial demonstration phase. The model has worthy goals:

  • First, by focusing on the person with dementia, and better addressing their care needs and transitions between levels of care.
  • Support dementia caregivers by providing them with training, social services, and respite care.
  • Focus on providing sufficient support for those dementia to safely live at home for as long as appropriate and reduce the need for nursing home care.

I think most dementia caregivers will welcome such support, even if it is long overdue. It will be interesting to see how this program is implemented and how it evolves during its testing period. For more information, review the GUIDE fact sheet.

Infographic image by cms.gov.

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