Tag Archives: caregivers

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.

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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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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.

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Deaths of Gene Hackman and wife sad reminder of the risk of a spouse-caregiver dying first

Image of Santa Fe via Pixabay.

The unusual circumstances surrounding the deaths of actor Gene Hackman and his wife serve as a stark reminder of what can happen when a spouse who also is the primary caregiver of a spouse with Alzheimer’s dies before their loved one.

Hackman and his wife, Betsy Arakawa, who at 65 was 30 years his junior, were found deceased in their secluded Santa Fe, New Mexico home on Feb. 26. A pest control worker alerted security for the gated community in which the couple lived after showing up to provide service but not receiving a response, KRQE reported. Upon investigating, the security officer found the bodies and contacted authorities.

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An autopsy revealed that Arakawa died of hantavirus pulmonary syndrome around Feb. 11, KRQE reported. Since my parents retired to New Mexico, I was aware of hantavirus, which is rare, with most cases appearing in the southwestern part of the U.S.

Hackman, 95, died of heart disease with complications of what the medical examiner noted as an “advanced state of Alzheimer’s disease.” He’s believed to have died on Feb. 18, when the last activity on his pacemaker was recorded. That means authorities believe Hackman could have spent up to a week alive after his wife died. We will likely never know the details of those days, and whether Hackman realized his wife was deceased or whether Hackman’s cognitive decline may have prevented him from understanding the dire situation.

In addition to the couple, one of their dogs died, while two were found alive. The deceased dog was found in a crate near Arakawa’s body. Veterinary records show that the dog had undergone a recent medical procedure, which likely was the reason it was confined to the crate, authorities said.

Such a tragic ending is a sobering reminder for those who serve as the sole caregiver for a spouse or other relative with a condition like Alzheimer’s in which the care recipient may not be able to call for help or care for themselves in the case of a medical emergency involving the caregiver. By all accounts from friends of the couple, Arakawa closely managed Hackman’s health. As his Alzheimer’s progressed, he likely became even more dependent upon her guidance.

Some have questioned why Hackman didn’t have a professional caregiver, or even a live-in care provider, as he likely could have afforded such a service. It seems Hackman and his wife enjoyed their privacy, and with Arakawa considerably younger than Hackman, and very capable of managing his care, outside help may have felt intrusive and unnecessary. As those of us who have cared for loved ones know, bringing in external help can be upsetting and disruptive to those with Alzheimer’s, as they thrive on routine and familiarity.

What can caregivers do if they find themselves in a similar situation? Having a plan in place to account for a caregiver’s acute health crisis is vital. Share a document with family that includes key health information, current prescriptions, etc. Technology can help; there are numerous medical alert systems available which can call for help with a click of a button or can sense when someone has fallen and automatically send help. My mother found such medical alert services useful as she lived alone. Having a trusted friend or relative who can serve as a check-in buddy can be helpful. Over the last year or so of my mother’s life, we spoke almost daily, which allowed me to assess her wellbeing in addition to offering social connection.

If you have a loved one that you haven’t heard from in awhile, don’t hesitate to check on them.

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When home can no longer be found

One common behavior in those with Alzheimer’s disease is to ask to “go home.” It seems like the simplest of requests, but caregivers are often stumped because their loved one may make this request when they are already home. That’s because the meaning of “home” can change as the disease progresses.

My father asked to go home almost every time my mother visited him at the memory care center during the last year of his life. But my mother didn’t get the sense that my dad meant home as the condo they had purchased. Home seemed to be a more vague destination. In fact, my dad and his roommate reportedly hatched a plan to escape the memory care center and catch a bus to … somewhere undefined. The memory care center had secured access and the escape plan was quickly forgotten.

The last time I saw my father alive, he also expressed a desire to go home. This time, it was clear that home meant to Belfast, his birthplace, because he mentioned wanting to see his sisters. There is some evidence to suggest that those with dementia hold on to their earliest memories longer than more recent ones.

For caregivers, the “going home” request can be difficult to navigate. This recent article in Self has some good tips and strategies. Once physical discomforts are ruled out, caregivers can implement a variety of strategies to engage with their loved one and help them move on from the “going home” obsession loop. These strategies may need to be adjusted over time; be prepared for a period of trial and error.

Loved ones with dementia who express great distress about their current surroundings may attempt to wander. In these cases, making sure home are adapted to prevent escape attempts is essential. Specialized door locks and high-tech tracker tags can help in these situations.

Losing a sense of home must be frightening, as our homes are often our sanctuaries. Helping loved ones with Alzheimer’s navigate this disturbing yet common behavior takes compassion, patience, and creativity.

Image by DALL-E 3 via ChatGPT.

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A sobering reminder for those on the dementia caregiver journey

I hope those dementia caregivers who wonder if they are doing enough or doubt their capabilities of caring for their loved one take the time to read the above post, “Dementia Does What It Does” on the When Dementia Knocks blog. Elaine captures quite eloquently the progressive march that dementia eventually takes, no matter what cures or solutions you throw at it. Elaine’s message may sound pessimistic, but its intention is to give yourself a bit of grace and self-compassion. When you accept the current reality of a dementia diagnosis, you may blame yourself less when your loved one continues to decline, in spite of your best efforts.

There is some tentative hope of more effective treatments on the horizon, but for now, just know that you are doing your best as a caregiver.

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How color plays a role in dementia care

After learning about colors as a child, we may take their appearance for granted, unless you are an artist. But colors can take on different meanings for those with dementia, and understanding those changes can be helpful as a dementia caregiver.

I remember seeing the visual impact of dementia in person when visiting my parents. We were in a building with an elevator, and my father took a very large step across the threshold of the elevator, where a black mat was placed. As Linda Slaton Anderson points out in this article published in Today’s Caregiver, “some therapists recommend placing black mats in front of doors or stairs since Alzheimer’s patients perceive them to be holes and thus tend to avoid walking on them.” Clearly, my father experienced that “black hole” visual disruption.

While some changes in processing colors can be frightening for both those with dementia and their caregivers, colors can also be used in positive ways. For example, those with dementia with diminished appetite may benefit from using red dishes on a white tablecloth, due to the higher contrast attracting attention to the food on the plate.

“Colors are processed by our brains more quickly than words,” Anderson notes. As those with dementia lose their language abilities, colors may remain a way to convey feelings and encourage engagement.

Color choice can impact mood, which those with an interest in interior design understand well. This applies to those with dementia as well. Blues and greens can provide a calming, soothing effect, while orange and yellow are cheerful colors that can lift one’s mood.

For caregivers trying to decode or address negative behavior in their loved one with dementia, consider the role color may be playing.

Image created by Microsoft Copilot.

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Snow day in Atlanta

We had the rare snow day in Atlanta on Friday. It snowed a bit more than expected intown, and upon waking one walked into a winter wonderland.

It’s always fun to see how pets react to snow, especially when they don’t see it very often. My dog Murphy was braver than expected. My girl kitty Serena, who on a sunny day loves to try to bolt out the door to explore the yard, approached the snow with extreme caution and immediately regretted her decision, haha. And Dorian, my boy cat, the daredevil of the bunch, flat out refused to even put a paw into the snow.

Growing up in southern California, I never saw snow until I moved away for college, but I remember my mother having fond memories of snow days on the farm in Tennessee where she grew up. While there were still farm chores to be done, school was out. The family would make snow cream from the freshly fallen snow. Of course nowadays, with all of the pollutants in the environment, this wouldn’t be safe to do, but back in the day, my mother had fond memories of this rare, special treat.

Of course, winter weather can bring challenges to those with health issues and their caregivers. Last year around this time I wrote about keeping your loved ones with dementia warm and comfortable during winter weather events. I notice that as I age, the cold tends to bother me more so I’m using some of the tips on the list as well, such as layering and paying attention to my hands, which can be a challenge to keep warm.

Hope you are staying warm and cozy this winter season.

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Helping elders build community connections

Happy New Year. I hope you were able to enjoy time with family over the holiday season.

Once the holidays are over, our elder loved ones may miss the social interaction and companionship. I know my mother deeply missed the daily companionship of my father after he moved into the memory care center and then died a year later. There was an active senior community center where she lived, but my mother refused to go, saying she didn’t want to be around “old people.”

Home Care Matters had good tips on helping elders connect with community in their newsletter. They also offered additional tips about keeping elders engaged during the winter months when it may be difficult to leave the house for socializing. Some churches offer transportation service for those who need assistance to and from services. Volunteer work is another great way to connect with the community. How one socializes and stays engaged with their community may take some creativity on the part of family, but the mental, emotional, and health benefits are well worth it. You’ve likely seen the reports about the health consequences of the loneliness epidemic, including an increased risk of dementia.

What about our elder loved ones who are introverted or don’t enjoy the typical senior community center activities? As an introvert myself, I’m not a big fan of in-person group activities, but I found that I do enjoy online activities like virtual book clubs. An online women’s healing circle has been beneficial in supporting my emotional wellbeing during the pandemic. I also enjoyed an in-person knitting group I attended last year a couple of times and may return to that in the future. For me, the key is to use my hobbies and interests to find communities where we share a common interest.

What about those who are resistant like my mom? Sometimes, you have to let your loved ones follow their own way. For example, my mother used errands to socialize with everyone from the bank manager to the Mexican restaurant server to the shuttle driver. I appreciate those people who took extra time to interact with my mother. They probably don’t realize how much of a positive difference they made in my mother’s life.

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Give the gift of books

When I was cleaning out my parents’ condo, I came across so many books! I’d donated many books to the local library over the years, so I couldn’t believe how many books were still left when I did the final cleanout. Most of the books belonged to my father, who had a deep interest in WWII history, as he lived through the bombing of his hometown of Belfast when he was a child.

Reading was my father’s passion. He was a voracious reader and always had a book or two on his nightstand or coffee table. He sparked my love of reading, and some of my happiest childhood memories are Saturday afternoons spent with Dad in the library. I still enjoy physical books, but I do most of my reading now via e-books. It’s just more convenient and I’m at a point in life where I want to downsize, beginning with my possessions.

With that being said, books can make wonderful gifts this time of year so I want to let you know about Smashwords 2024 End of Year Sale. I’m a participating author in this sales event so you can get e-book versions of The Reluctant Caregiver and CBD for Caregivers for half off from Dec. 12 through Jan. 1, 2025. Use the code SEW50 at checkout.

Digital books can make ideal gifts for those who live far away or for last-minute gift ideas. If you are gifting a book to a caregiver, you may wonder, do caregivers have time to read? It really depends upon the individual circumstance, but reading can be a source of respite, a way to whisk away to another world, even if one only has time to read a page or chapter at a time. A great resource for books that are curated by and for dementia caregivers can be found at AlzAuthors. Their collection includes everything from memoir to self-help to children’s books.

Speaking of children’s books, my tale about my senior rescue dog, Slow Dog, is also still available.

Murphy posing with his book.

Hope you get to enjoy the gift of a good book this holiday season.

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