Tag Archives: caregivers

July 19, 2025 · 3:05 pm

Birthday reflections: The gift and burden of self-care

Birthday breakfast treats!

Today is my birthday. After last year’s leap of faith, I’m keeping it simple this year with a staycation. An at-home vacation gives one opportunities to indulge in self-care.

I’m a believer in self-care; my project Respite Care Share is all about helping caregivers take breaks from caregiving duties. (I’m wrapping up a refresh of that project, more to come soon.) There are numerous studies about caregiver burnout and the dangers it presents to caregivers and care recipients. Taking regular caregiving breaks is key to recharging and maintaining an identity outside of caregiving.

But reality check: self-care doesn’t happen by waving a magic wand. I wish it did! For solo caregivers and single folks, self-care is yet another task one has to perform on top of all of the other chores and duties necessary for a functional life. And at some point, caring for yourself can feel like a burden.

If you find yourself struggling with self-care, try connecting with resources that are meaningful and authentic. I listened to an episode of the Happy Healthy Caregiver podcast recently with two of my favorite people in the metro Atlanta caregiving community: Elizabeth Miller and Hope Cross. This was a down-to-earth discussion about the challenges of caregiving and taking care of oneself. You may remember I’ve written about Hope before, as she cared for her husband, Steve Dezember, who had ALS. She is now a licensed counselor with a practice focused on family caregivers.

If you are looking for ways to incorporate more self-care into your life (most of us need to!) the Happy Healthy Caregiver website is a good resource. From my own experience with Respite Care Share, it’s best to start small, with easy to manage and access respite activities, even if it’s just getting away for an hour and enjoying your favorite beverage at a local cafe or taking a walk in the park. Respite can be designed to fit the caregiver’s needs and caregiving situation. For some, it might mean a weekend away; for others an afternoon to recharge. What’s important about respite and self-care is not so much what you do, but how often you engage in caring for yourself.

Looking at old family photos is a favorite respite of mine. If you haven’t tried My Heritage’s new AI feature, Live Memory, consider giving it a spin. You get to try it for free. It brings motion to images. It added an extra sweet dimension to this beloved photo with my father.

Here’s hoping you can find a way to make self-care the gift it should be and not a burden in your life.

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July 14, 2025 · 9:00 am

Analysis: Dementia caregivers more likely to report risk factors that increase their own risk for dementia

A new analysis conducted in part by the Alzheimer’s Association found that dementia caregivers are much more likely to report at least one modifiable risk factor that increases their own risk of developing dementia. According to the analysis conducted by two public health centers in the US, nearly 60% of dementia caregivers report having at least one modifiable risk factor and nearly 25% report having multiple risk factors.

The analysis was based on data collected from 47 states and focused on six modifiable risk factors for cognitive decline among individuals caring for someone with dementia: diabetes, obesity, physical inactivity, smoking, sleep, and hypertension.

Compared with the overall population, dementia caregivers were more likely to report five of the six risk factors examined. The differences were most significant for smoking (30% more likely), hypertension (27% more likely), and poor sleep (21% more likely). Dementia caregivers were also 12% more likely to have diabetes and 8% more likely to be obese.

Gender, age, and race played a role, according to the analysis findings. Male dementia caregivers were about 15% more likely to have at least one risk factor versus female dementia caregivers.

American Indian/Alaska Native dementia caregivers were the most vulnerable population according to the analysis, reporting at least one risk factor (77 percent). Black caregivers were close behind at 72 percent, followed by Hispanic (59 percent), White (58 percent) and Asian American (28 percent) caregivers.

Dementia caregivers under 45 were about 13% more likely to have at least one risk factor
compared to all adults under 45 and 40% more likely to have multiple risk factors.

“This analysis should be a wake-up call for public health to develop strategies that address caregiver health to help this at-risk population,” said Matthew Baumgart, senior vice president, Health Policy, Alzheimer’s Association.

According to the researchers, more than a quarter of dementia caregivers delay or do not do
things they should to maintain their health. My own mother delayed going to the doctor for her GI symptoms, and six months after my father’s death from dementia complications, she was diagnosed with colon cancer.

The goal of sharing such sobering statistics is that the health of dementia caregivers is being neglected by the healthcare system, and earlier interventions and greater resources are needed to turn around this trend. No one should see their health suffer because they are caring for a loved one.

Image generated by ChatGPT.

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June 28, 2025 · 3:37 pm

Free yourself from the burden of being a superhuman caregiver

When Dementia Progresses

Dr. Elaine Eshbaugh offers wise words and compassionate insights once again on her blog, When Dementia Knocks. There are many ways family members can react to a loved one’s dementia diagnosis. Some people will embrace the fuzzy blinders of denial, while others will go into overdrive in an attempt to protect their loved one from cognitive decline for as long as possible. While the latter is noble to a certain extent, it can place an intense and unrealistic burden on the caregiver, as Eshbaugh points out in her blog post. Alzheimer’s is a progressive disease; while there may be some steps you can take to stave off decline for awhile, they won’t work in every person and eventually, the disease progresses. When a loved one declines after a period of relative stability, it’s not the fault of the caregiver. It is simply the nature of the terrible disease.

Be kind, especially to yourself and your role as a dementia caregiver.

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June 22, 2025 · 8:00 am

Stay safe, keep cool this summer

Summer has just started and this week it’s supposed to be in the high 90s here in Atlanta. I’ve lived here since 1997, and know that hot, long, and humid summers are to be expected. But as one gets older, one needs to take extra precautions against the heat. This applies to our pets as well.

Each year, I write at least one blog post dedicated to summer safety tips. It’s heartbreaking to think that in our modern age, people die because of the heat. For dementia caregivers, extra thought should be given to not only protecting loved ones from the heat, but also finding indoor activities that are stimulating and finding ways to still spend a bit of time outdoors.

The CDC has a simple caregiver checklist for heat safety. Here are some key factors to consider:

Hydration: I’m always blown away by the fact that some people don’t drink water. I consistently drink water throughout the day and would feel unwell if I didn’t. Older people often don’t drink enough fluids, and dementia can complicate matters further. To make water less boring, there are flavored waters and sparkling waters. Unsweetened varieties are available for those who need to keep their blood sugars in check. Another fun solution are Jelly Drops. Hydrating foods like watermelon count as well, so consider that as a tasty option.

Cooling options in the home: In certain parts of the country, such as where I live in Atlanta and where I used to live in Texas, air conditioning is considered a must-have. That doesn’t mean everyone has AC, or can afford to use it. I hate to hear about cases where older people die from the heat because they were afraid to turn on their air conditioner due to the cost. It’s no joke that AC is expensive to run; there are government programs to help offset some of the costs. Cooling stations exist in some cities during extreme heat waves. Check on your elder loved ones frequently during heat waves and make sure they are living in a situation that is bearable, especially if they are in fragile health.

Adapting favorite activities: If you live in an area that experiences extreme heat, those long and hot sunny days can begin to feel like a prison. This is especially true for loved ones with dementia, who may become restless if their outdoor activities are limited. There are a few things you can do to adapt. One thing I do with my senior dog is take walks early in the morning, where it might be humid but at least the sun isn’t broiling us. There aren’t as many shopping malls as there used to be, but if you still have one in your area, walking around the air conditioned mall can be a nice indoor activity on a hot day. My parents used to do this for exercise. Some recreation facilities have indoor walking tracks; swimming pools could be another option to cool off. Instead of hitting the golf course on a dangerously hot day, consider an indoor golf simulator facility like Topgolf. Museums offer a stimulating activity in a cool environment.

Caregivers should learn the signs of heat-related health issues so they can spot them quickly in those they care for and seek timely treatment.

I admit I dread the summers, because of the oppressive heat and the mosquitoes. But what I do enjoy about summer is the extended daylight and iced coffee. If you are not a fan of summer, try to find one thing to enjoy: maybe it’s an ice cream cone or a dip in the swimming pool. Hopefully you can share some of these simple joys with your elder loved ones you care for, and make happy memories this summer season.

Illustration created by ChatGPT.

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June 6, 2025 · 9:00 am

New documentary highlights the challenges and triumphs of being a family caregiver in the US

There’s a new documentary airing on PBS called, Caregiving. Actor Bradley Cooper served as an executive producer and at the beginning of the film, he discusses the emotional impact caring for his father had on him.

The bulk of the film focuses on average Americans who are faced with a healthcare crisis in their family and how they attempt to navigate America’s broken healthcare system to access essential services. When that fails, caregivers are forced to take on the burden all on their own. I definitely could relate to many of the challenges these caregivers faced, from job loss to the extra stress of being a sole care provider. I also like that the film showcases stories of care recipients and caregivers who are a variety of ages. Caregiving is not just for the young and the old; any of us can be faced with an unexpected health issue that we are not prepared for and will upend our lives.

While the stories shared in the documentary are sobering, there are moments of triumph and a historic overview of care in America, and how advocates over the decades have made a real difference in how care services have evolved. There’s no question that more resources and support are needed, especially as we grapple with a rapidly aging America. There are some positive developments at the state level, with funding programs for paid leave being approved by voters but nationally, even though Americans in polls claim to support additional care funding, they often don’t vote in their best interest.

Politicians claim they can’t stomach the cost of programs like paid family leave, yet studies (and common sense) shows that the longer you can support an elder aging in place at home, the more reasonable the cost compared to having Medicaid pay the expense of a nursing home. Meanwhile, family caregivers provide billions of dollars in free labor each year, to fill the gaps the government refuses to cover.

Caring Across Generations is featured prominently in the Caregiving documentary, which I’m glad to see, as I’ve participated in events with them in the past. I appreciate their practical yet compassionate approach to caregiving issues, and their focus on being inclusive, as caregiving is something that touches all of our lives at some point.

I hope you get a chance to watch the documentary. I’d love to hear your thoughts.

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May 31, 2025 · 8:00 am

AI-powered phone call service offers virtual wellness checks for seniors

I came across a new service for seniors and their family caregivers that is getting ready to launch. I’ll admit it caught my eye because it has my name! Joy Calls is an AI-powered call service that performs virtual wellness checks.

A smart feature of the service is that even though Joy is an AI-powered persona, the high-tech is contained in a familiar package: a telephone call. No special equipment or training is required to use the service. Joy calls your loved one, checking in on things like medication, hydration, diet, and mood. Your loved one’s responses are summarized and provided to the caregiver.

The concept is designed not to replace family caregivers but virtually augment the monitoring of their loved ones, potentially extending their ability to age in place safely. A price hasn’t been set yet, but according to Onscreen, the company producing Joy Calls, the service is expected to cost in the range of $10-40 per month.

It’s an intriguing concept, and I will be interested in how well the service works and if it can meet the needs of seniors and family caregivers. I’m curious to see how the service handles sensitive information and if it can reduce the risk of AI hallucinations, otherwise the calls could go off the rails. And thinking of my mother, how will Joy handle a senior who is, to put it politely, verbose? Will she interrupt and try to get the call back on track? I felt helpless at times trying to keep my mother focused on the topic at hand, so I hope Joy Calls is up to the challenge.

Image created by ChatGPT.

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May 21, 2025 · 8:00 am

A decade since my mother’s death

It’s hard to believe that today marks 10 years since my mother’s death. The moment my mother took her last breath is still crystal clear in my mind, even though I can recognize the considerable amount of time that has passed. Considering the turmoil that has engulfed the world over the last decade, I have to say Mom had impeccable timing when she exited this world.

As I was writing this blog post, Maria Shriver’s Sunday Paper hit my inbox. In it was an article, Want to Have No Regrets When You Die?, which was written by Diane Button, a death doula. She shared an encounter she had with one of her dying clients, who told her, “I am not yet ready to die. I’ve spent my whole life caring for others, and honestly, I don’t even know who I am.”

This really resonated with me as it’s one of the cornerstones of my caregiver advocacy, to support the needs of family caregivers and making sure they don’t lose their own voice. Writing is one effective way of maintaining your identity, and can help process the complex emotions that caregiving triggers. One of my goals with publishing The Reluctant Caregiver was to encourage other caregivers to release the guilt and shame they felt during their caregiving experience.

Button shared a simple yet powerful, “I am …” writing prompt that anyone can use to connect with themselves. The prompt could also be used in an audio format if that’s one’s preference. Button suggested that it’s an exercise that one can revisit, then review prior answers to see how your sense of self has transformed over time.

Here’s what I came up with to mark this somber anniversary:

I am resilient.
I am learning.
I am determined.
I am evolving.

Feel free to share your “I am” creations in the comments section. I’m working on a project that includes writing prompts for caregivers. More to come soon.


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May 5, 2025 · 8:00 am

New documentary on aging in America highlights continued challenges, opportunities

There’s a new documentary about aging, Aging in America: Survive or Thrive, that is airing on PBS for the month of May, which is Older Americans Month. The documentary marks the 50th anniversary of the publication of the Pulitzer-prize winning book “Why Survive? Being Old in America” by Dr. Robert Butler.

While the number of Americans over the age of 65 has more than doubled during the last five decades, in part due to medical breakthroughs, the financial stability of older Americans continues to erode. The documentary notes that older people are the fastest growing group of homeless people in America. Older homeless people may find themselves in that situation for the first time in their lives, after a job loss or medical emergency. The film highlights one such case in which a woman, who was a nurse, ended up living in a moving van for almost a year after being diagnosed with cancer and spending her life savings on treatment.

There’s also a touching segment about a wife caring for her husband with Alzheimer’s in Wyoming, and the challenges of dementia care in an isolated rural environment with limited medical services.

The documentary highlights the organizations that are doing commendable work in addressing the needs of the older population in their communities. From providing meals to companionship and aging in place assistance, these organizations provide critical services to older Americans.

America’s preoccupation with youth hasn’t changed much in the 50 years since Dr. Butler noted that bias in his book. The field of geriatrics continues to struggle to attract new doctors. We don’t have nearly enough care workers to tend to our rapidly expanding older population.

Filmmaker Neil Steinberg said in a Next Avenue interview that he wants to encourage people to “rethink aging” after watching the documentary.

“We need to give people the opportunity to live their later years in dignity,” Steinberg said.

Illustration created via ChatGPT.

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April 28, 2025 · 8:00 am

Join AlzAuthors for a poetry reading

I hope you can join AlzAuthors for Poetry for the Dementia Journey, a moving and inspirational poetry reading on Tues. April 29 at 2 p.m. EDT. I’m honored to be one of the participating poets. I’ll be reading a poem inspired by my father’s experience with dementia. The event will be held virtually via Zoom.

While I’ll always consider the essay format to be most suitable for my writing style, I’ve always had a love of poetry. There’s something unique and impactful that comes from writing poetry vs. long-form writing. Distilling emotions and events down to their essence can help one see things in a different light. With poetry, I can’t hide my feelings behind paragraphs of text; I’m motivated to release the raw feelings, which is so cathartic when it comes to the caregiving experience.

If writing poetry feels intimidating, try writing a prose poem. I was thrilled to have Her Lists, a poem about my mother’s colorful and wild shopping lists, included in The Prose Poem journal in 2024. Though I’d written about the same subject that I included in my award-winning essay collection, The Reluctant Caregiver, the prose poem format allowed me the freedom to play with language and rhythm.

AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. The wonderful organization is celebrating 10 years, which is hard for me to believe. I’m amazed at its growth and what it has done for the Alzheimer’s community.

If you are unable to attend live, the poetry reading will be recorded and shared on the AlzAuthor’s YouTube channel and podcast. There’s also a free guide that will provide you with links to poetry books written by members of the AlzAuthors community. In honor of National Poetry Month, you can purchase a copy of Poetry for the Dementia Journey: An AlzAuthors Anthology at a deep discount.

Hope to see you at the poetry reading!

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April 21, 2025 · 8:00 am

Tips on starting a dementia support group

As government funding vanishes for community-based health programs, it’s becoming increasingly clear that caregivers will need to build their own support networks. If you are considering starting a support group in your community, there are plenty of helpful resources online to help guide you to success.

Today’s Caregiver offers an excellent resource about starting a caregiver support group. The article does a good job addressing the key questions and tasks one must consider, from meeting location to group leader requirements and suggestions on how to set up the first meeting.

I’ve mostly attended online groups but I appreciate the benefits of in-person meetings. There is something special about sharing physical space with others that is difficult to replicate online. But Zoom meetings can offer critical connections to those who might not otherwise be able to attend support groups, such as those in rural locations and those who don’t have transportation options. In this day and age, both options are important to have available to support as many caregivers and care recipients as possible.

There are some unique considerations when it comes to creating a support group for those with dementia. The Toolkit Project offers a variety of dementia-specific resources to help those interested in creating a support group in their community. The Alzheimer’s Society also has tips for facilitating dementia-friendly discussions, including the use of cards to better understand an individual’s communication needs. Keeping things simple and clear, being flexible when it comes to the unexpected, and remaining respectful and compassionate are key factors to facilitating a dementia care support group.

Speaking of community, AlzAuthors is one of my favorite dementia-focused organizations and it is celebrating its 10th anniversary. Join us for a poetry reading on April 29 at 2 p.m. ET. I’m honored to be one of the participating poets.

Image generated by Google Gemini.

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