Category Archives: Awareness & Activism

May 1, 2023 · 8:00 am

Hope to see you at the Atlanta Writers Conference

I will be participating in the Book Fair being hosted at the Atlanta Writers Conference this weekend. The Book Fair is being held Friday, May 5 from 11 a.m. to 6 p.m. I will be there most of the day. My latest title, my award-winning children’s book, Slow Dog, will be featured, but I’ll also have a few copies of my award-winning personal essay collection, The Reluctant Caregiver, and a few copies of Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias, which includes an essay I wrote about my father. All books will be priced at a special book fair discount.

The event will be held at the Westin Atlanta Airport Hotel. Conference details can be found on the Atlanta Writers Club website.

Shortly after my mother’s death, I learned that I had been selected as the recipient for the 2015 Rick Bragg Prize for Nonfiction, in the annual contest hosted by the Atlanta Writers Club. That honor gave me the confidence I needed to keep writing about my caregiving experience and eventually, publish a collection of my personal essays. So the Atlanta Writers Club will always hold a special place in my heart.

If you will be in attendance, please swing by the Book Fair room to say hello!

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April 17, 2023 · 8:00 am

Gardening offers a myriad of health benefits, experts say

While I love walking, I don’t enjoy working out on exercise machines and have zero interest in going to a gym. I prefer solo activities so exercise classes are not something that interest me. But I do enjoy gardening and yardwork and have thought to myself, while breathing hard and sweat pouring down my face, that such activities must provide a good workout.

It turns out that science agrees with my theory. According to a recent CNN article, gardening for fitness is set to become a health trend. The article provides an overview of research that supports gardening as an effective fitness activity. Included is a link to a CDC chart that shows the calories burned while doing common physical activities. The CDC says light gardening/yard work burns 330 calories for a 154-pound person. That’s the same amount of calories burned as dancing and golfing.

What I like about yard work is that it’s a full body workout. From raking leaves and hauling heavy leaf bags to the curb, to pulling weeds and digging holes for new plants, you engage a variety of muscles and also get a cardio workout. For me, it’s not only about the physical activity but the satisfaction one feels after planting something or removing weeds. A yard tended to your tastes can be a serene space for reflection.

For caregivers of those with dementia, gardening is something that could be a satisfying outdoor activity for both you and your loved one, at least in the earlier stages of the disease. Yardwork involves the hands and rote activity, something that those with dementia seem to find soothing. As long as those with dementia are physically capable, getting light exercise and spending some time outdoors on a regular basis is recommended. Do be careful to keep an eye on your loved one and keep sharp gardening tools out of their reach.

Image by marinabridger from Pixabay.

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April 3, 2023 · 8:00 am

Moving short film “Ruth” captures dementia experience in single take

Whenever I come across realistic, compassionate depictions of the dementia experience I like to share them here. Paul Romero Mendez, the filmmaker behind a short film named “Ruth” reached out to me recently. His moving film was released in 2021. The film depicts a woman with dementia who is lost in her own home. Highlighting this experience is very important, because while remaining in the family home can offer those with dementia the comfort of familiarity, the disease may strip away the very memories that makes the home feel meaningful and safe.

Many of us who have had cared for loved ones with dementia have had to confront the dreaded request to “go home.” But home may not be what you think. If your loved one is in a memory care center, maybe it is their last home, but it could be their childhood home. Time doesn’t necessarily move in a linear fashion for those with dementia. One minute they may be back in their childhood, the next a young adult, and the next to the current time. My father often asked to go home when he was in the memory care center, but he also talked about going home to Northern Ireland to be with his sisters. So I don’t believe home was the condo in Ruidoso where my parents retired. Home may not be a fixed place in the way we think of it, but a feeling of love and contentment.

The film was shot in a single take, so the audience can understand better the swirling cloud of confusion that those with dementia may contend with on a daily basis. It’s a powerful depiction, filmed with compassion. You can watch the film below. (This is a different short film from the one I posted about in January, which is also called Ruth.)

Photo by Danie Franco on Unsplash.

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March 28, 2023 · 11:19 am

Escort requirement causing some solo elders to miss important screenings, procedures

I’m glad to see The New York Times covering this important, but often overlooked issue. For solo elders, the requirement for a medical escort to accompany them to and from procedures is a burden that is difficult and expensive to overcome. It can be so difficult that elders decide it’s not worth the hassle and skip the procedure altogether.

Colonoscopies are probably the most common procedure that falls under this rule. Because of the sedative medications used, medical providers require an escort, so a person can’t use an Uber or Lyft as transportation. The escort needs to be a person known to the individual or a medical professional. Not all elders have loved ones still living or located nearby to assist them. And the cost of medical professionals to provide escort service is not covered by Medicare.

This is one of many issues that the population of elder orphans, those without a local support network, can face.

My mother was forced to pay out of pocket for expensive medical transportation to get her to and from her cancer screenings and follow up tests. It makes no sense that Medicaid covers nonemergency medical transport, but Medicare doesn’t.

The article highlights resources solo elders may be able to utilize, including nonprofits and home care companies. Those involved in religious organizations may consider reaching out to their congregation. While there are resources, they take time, effort and sometimes money to utilize. The onus should not be on the patient to jump over high hurdles to access these potentially life-saving procedures.

Photo by Alexander Grey on Unsplash.

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March 13, 2023 · 8:00 am

AARP: Valuing the Invaluable 2023 report

This month, AARP released a report: Valuing the Invaluable 2023 Update. While no one has to tell caregivers how much free labor they provide while caring for their loved ones, it does help to calculate a value for caregiving work and have a well-known organization like AARP broadcast how much economic value caregivers provide.

Among the highlights of AARP’s report:

  • In 2021, approximately 38 million Americans spent 36 billion hours caring for adults with a range of health conditions.
  • The estimated economic value of that care is $600 billion.
  • 60 percent of caregivers juggle a full- or part-time job and care.
  • 40 percent of caregivers say juggling a job and caregiving duties is their biggest and most emotionally stressful challenge.
  • 30 percent of caregivers are “sandwich caregivers” caring for two generations at the same time.
  • Caregivers come from diverse populations and an individual’s culture informs their caregiving experience.

In addition to the findings, the AARP report made several recommendations. The AARP advocates for the passage of caregiver support legislation and strengthening paid family leave, offering caregiver tax credits, expanding respite care options and making sure caregivers are part of their loved one’s care plan.

How many reports will have to be produced for our government to take caregiving seriously? Every year I highlight such reports and the progress we’ve made to support caregivers is frustratingly slow. Keep telling your caregiving story to whoever will listen.

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March 5, 2023 · 2:15 pm

Celebrate Read an Ebook Week

It’s Read an Ebook Week. While I’ll always love the feel of pages in a physical book, I do almost all of my reading using my Kindle. It’s just more convenient for my lifestyle.

If you are an electronic book fan, this is a great week to take advantage of special deals. I’m participating in the Smashwords promotions. You can get The Reluctant Caregiver and CBD for Caregivers for just 99 cents today through March 11. Note: It looks like the promotion is so popular that the Smashwords website is experiencing some technical difficulties. If you get a broken link, check back later.

If you are looking for a digital children’s book, you can get Slow Dog for just $2.99 on Amazon.

Happy Reading!

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February 27, 2023 · 9:00 am

Do brain games offer protection against Alzheimer’s?

Every night I wind down by playing two games on my tablet: a crossword and a Jumble word puzzle. I’ve always enjoyed word puzzles. I inherited my love of the Jumble puzzles from my mother, who was a devoted player. One of the ways we bonded as she recovered from cancer surgery was working on Jumble puzzles together. My dad was an avid reader, but his love of words didn’t extend to games. It was particularly cruel when Alzheimer’s took away his favorite hobby of reading.

There are many apps and articles that promote “brain games” as a way to reduce the risk of Alzheimer’s and other dementias. While proponents of such games are enthusiastic about their potential in supporting cognitive health, the research so far is mixed when it comes to benefits.

One study that involved people diagnosed with mild cognitive impairment found that crosswords helped support cognitive health more than other games, though the positive results were not dramatic.

There’s no harm in playing such games if it brings you comfort. I do notice that if I’m tired or not feeling well, I struggle with completing the puzzles as fast as I normally do. I like to challenge myself to complete the crosswords as fast as possible. For me, this means not stopping to ponder a clue that I’m stuck on; instead I keep going and complete as many other words as possible before coming back to the ones that stumped me.

While such games may not offer protective benefits against Alzheimer’s, we do know that doctors use a series of tests which could be considered game-like to help diagnose someone with the disease, such as word memory exercises. I’ve participated in a study which has me complete a series of games along with a cognitive questionnaire a few times per year. Doing word games as part of your daily routine could help you spot a decline in your cognitive abilities earlier than you might have noticed otherwise.

Photo by Ross Sneddon on Unsplash.

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February 20, 2023 · 8:00 am

Supporting the caregivers in your life all year long

Friday was National Caregivers Day, but why just celebrate one day a year? Let’s keep the support flowing all year long.

AARP compiled a nice, actionable list of things one can do to support your caregivers in your life. I appreciate the “what that looks like” suggestions under each support method. It can be difficult for one to know how best to support a caregiver, so these practical options are so useful. For example, under “demonstrate support” there are suggestions like help a caregiver get organized, do research, help with housework, yardwork or other errands, and bring a meal or provide a meal delivery service.

The key in supporting caregivers is making sure the onus isn’t on them to ask for help. As a former caregiver, I know how hard it can be for some of us to ask for assistance. But I always appreciated when someone stepped up and helped me on my caregiving journey.

Photo by Hannah Busing on Unsplash.

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February 13, 2023 · 8:00 am

Want to die at home? Start saving now

If you’ve followed The Memories Project blog for awhile, you know that helping families understand the complexities of dying at home is an important issue to me. I wrote an essay on the topic that went viral on The Caregiver Space: Why dying at home isn’t all that it’s cracked up to be.

Recently I read another essay that addressed the sobering financial costs that a family can incur to honor a loved one’s wishes to die at home: My grandmother died at home, just as she wanted. It cost $145,000.

In the essay, Sarah Romanelli describes a situation that will be familiar to many caregivers: “being held hostage” by a broken care system that breaks down as one becomes more fragile. In Romanelli’s grandmother case, she was too weak for rehab and too dependent to return to assisted living, who sent her back to the hospital. The family was forced to crunch numbers and develop a care plan, which involved at-home care.

The family moved the grandmother to an apartment close to family and hired 24-hour care. That cost a whopping $16,200 per month, but was still cheaper than securing a space in a long-term care facility. Keep in mind that care facilities may require families to pay out-of-pocket for private caregivers if a resident is deemed to need around-the-clock monitoring. This happens quite often for residents with dementia.

Romanelli says her grandmother received wonderful end-of-life care, but she knows that their family’s solution is not feasible for most people. My father also got passed around to various facilities and ended up being sent far away from my mother, because it was the only memory care facility with an opening. At over $4,000 a month, it quickly depleted my family’s modest resources. But 24-hour care would not have been feasible in my parents’ rural community due to staffing shortages, and definitely would have been more expensive.

Bottom line, no matter what care option you choose, it will be expensive. I want people to have the choice of dying at home, and not bankrupt their family in the process.

Photo by Alexander Mils on Unsplash.

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February 6, 2023 · 9:01 am

ChatGPT: Does it have uses for caregivers?

If you’ve been online over the last few months, you’ve probably come across discussions about ChatGPT. The conversational AI-powered (artificial intelligence) tool developed by OpenAI is the latest tech fad that some experts claim could take over our jobs in the future. (If you are interested in working with images instead of words try the related DALL-E.)

You may have seen some of the program’s capabilities: it can write articles, essays, jokes and songs, debug software code, and create resumes with some input from the user. Users can have a conversation of sorts with ChatGPT while refining their requests and the tool can ingest those new points and update its responses in real time.

As someone who enjoys exploring new tools but retains a healthy amount of skepticism about such tools taking over the world, I’ve spent some time testing out ChatGPT, focusing on how the tool could potentially be of aid to caregivers.

My main takeaway is that while ChatGPT can adequately provide information on a vast amount of topics, the responses are mainly generic and middling in quality, like someone reciting an encyclopedia entry. Your mileage will vary if you are asking a question on a highly technical topic or asking it to generate code for a website. But when asking for caregiving advice such as making a caregiver plan for someone with dementia or tips on aging in place, it regurgitates acceptable but basic advice that can be found across the internet. You can see a couple of examples below:

The glaring issue for me is that there is no attribution with ChatGPT responses. That could be important when you are seeking medical advice such as dementia caregiving tips. Are the pointers it is offering come from a dementia expert like Teepa Snow or a low quality resource? At this point, the responses could be used as a decent starting point, but the user would need to do additional research outside of the ChatGPT system to verify, augment, and personalize the information. Google and other search engines are seeking to incorporate attributes of such AI-based tools into their own programs which would offer a more conversational way to search for information.

I’m going to continue to explore the uses of ChatGPT and how it might be useful for caregivers. If you’ve used the tool, I’d love to hear your feedback.

Photo by Zac Wolff on Unsplash.

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