Tag Archives: caregivers

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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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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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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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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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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