Category Archives: Awareness & Activism

A thank you to caregivers

Happy Thanksgiving to those who celebrate. In addition to food, family and football, today is a day to show gratitude.

I’d like to give thanks to all of the caregivers, from family members to those in the care workforce. I’d like to express gratitude especially to those caregivers who feel invisible, unappreciated and overworked. You matter and you deserve more support. There are many people working hard to implement changes to better support caregivers. It’s been an uphill battle and will continue to be so, but caregiver advocates, many of us former or current caregivers, are a tough and dedicated bunch.

Let the caregivers in your life know how much their efforts mean. Thank you to all of those who have supported me on my caregiving journey, from following this blog to buying my books and sending encouraging notes and comments.

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What employers can do to support family caregivers

In honor of National Family Caregivers Month, I wanted to highlight a key area of support that is critical for family caregivers, yet many suffer in silence.

This AARP blog post is directed at employers and discusses how supporting their employees who are also family caregivers is not charity, but a smart business practice.

Not only is it a smart business practice, but it’s going to be essential over the coming years. As our population ages, more and more people will become family caregivers. 7 in 10 workers currently have some caregiving duties, according to AARP. One in four is a millennial and a growing number are even younger. Family caregiving is not an “older worker” issue but an issue that any employee can face.

One of the few bright spots in the pandemic was that in certain sectors of the workforce, strides were made in workplace and scheduling flexibility. Employees who are also family caregivers appreciated the difference that flexibility made in their quality of life. Now employers are using their fears of an economic downturn to try and force workers back into a rigid schedule and workplace locations. Some employees are rebelling, but many family caregivers have no choice because caregiving is expensive and not covered by insurance.

When family caregivers reach a breaking point, they end up leaving the workforce. That’s a loss for everyone. Employers who are concerned about having enough staffing can take steps to ensure that they are creating a support environment for family caregivers. It’s common sense that workers who have enough support to manage their family caregiving duties will also be more productive at work and more likely to remain with a company that offers such support. That makes it a win-win for all involved.

Here are some steps employers should consider to support family caregivers:

  • Offer a flexibile schedule
  • Offer remote work
  • Offer caregiver support programs as part of the employee health care package
  • Paid family leave
  • Making sure hiring policies don’t discriminate against older workers or those with caregiving duties

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National Family Caregivers Month: Caregiving Happens

November is National Family Caregivers Month. This year’s theme per the Caregiver Action Network is #CaregivingHappens.

One can become a family caregiver in the blink of an eye. As the #CaregivingHappens campaign illustrates, people can face a family care crisis at any moment. One can be going through a routine day, at work or running errands, and receive the call or text that requires one to switch into caregiver mode.

By raising awareness of how many people are family caregivers and how you may encounter them throughout your day, it helps to highlight the resources they need and where there are gaps in support systems. Family caregivers must not remain invisible or taken for granted.

Do you find yourself facing a family caregiving situation for the first time? Check out these 8 Rules for New Caregivers compiled by AARP.

Through Nov. 15, take advantage of the AlzAuthors Caregiver Appreciation Month Book Sale & Giveaway.

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Supporting Alzheimer’s research via trial participation

Louis Reed/Pixabay

While a cure or effective treatment for Alzheimer’s continues to remain elusive, there have been promising research developments this year. Recently, the results of a drug trial found that lecanemab helped to slow the progression of Alzheimer’s.

These breakthroughs wouldn’t happen without trial participants. It’s vital that researchers have access to a sufficient pool of volunteers. There are a variety of ways people can participate in Alzheimer’s research and you don’t have to have a specific diagnosis or be a certain age to participate in some programs. I take a battery of online brain tests and answer a health questionnaire a few times per year. Other areas of research may require in-person interviews, a blood draw, following a specific diet or taking medication.

Participating in a drug trial can come with risks, such as side effects from the medication. For example, aducanumab led to brain bleeding or swelling in 41 percent of clinical trial participants.

Study participants are closely monitored, so side effects are documented and treated quickly. Those willing to take this risk help determine a drug’s safety profile and whether a drug’s benefit outweighs its side effects.

Another important point to remember when it comes to drug trials is that there is typically a group receiving the trial drug and another group receiving a placebo, but “blind” trials don’t inform participants which one they are receiving.

If you are interested in learning more about participating in Alzheimer’s research, visit TrialMatch from the Alzheimer’s Association and the Brain Health Registry.

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Check shoe soles to help prevent falls

Kalle Saarinen/Unsplash

I recently bought a pair of shoes that left me frustrated. The soles were coated in a material that made them extremely slippery, especially on hardwood floors. I purchased them online, and I read the first page of reviews, which were mainly good. But starting on around page three, the warnings about slips and falls because of the slippery soles began. I wish I had researched a bit longer!

Both of my parents suffered from falls as they aged. My father’s dementia made him wander at night, a recipe for disaster. My mother broke her shoulder after falling off the toilet in the middle of the night. Her arm strength and range of motion decreased after that injury. But falls aren’t just a risk for older people. I myself fell at the park last year, slipping down a small slope covered in leaves. I had a sore back for days.

This odd pair of shoes made me think about how important mundane details are when it comes to caregiving, like what kind of shoes are your loved ones wearing? For loved ones who shop online, it’s worth assessing to make sure they are safe for walking on a variety of surfaces. From now on, I will pay closer attention to the soles of shoes!

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2022 National Strategy to Support Family Caregivers

Graphic courtesy of Administration for Community Living

In late September, the U.S. Department of Health and Human Services released its 2022 National Strategy to Support Family Caregivers. It’s the first time such a national strategy has been proposed. While it’s long overdue, addressing the needs of family caregivers in a coordinated national effort is a positive development.

“Supporting family caregivers is commonsense, since most people will at some point in their lives be a family caregiver, need a family caregiver, or both. Caregivers are sacrificing for their loved ones and often are standing in the health care gap by providing that care,” said Centers for Medicare & Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure.

The strategy focuses on five main goals:

  • Increasing awareness and outreach
  • Build partnerships and engagement with family caregivers
  • Strengthen services and supports
  • Ensure financial and workplace security
  • Expand data, research, and evidence-based practices

Read the strategy | Federal actions | State actions

Your feedback is critical to the success of the strategy. The commenting period opened Oct. 1 and will be accepting comments for a 60-day period. The strategy will be updated every two years as required by law.

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Sharing my experiences as a Gen X caregiver

I recently had the privilege of sharing my caregiving experience as member of Generation X on the Rodger That podcast.

Every generation faces its own unique challenges when it comes to the family caregiving experience. It’s difficult no matter what age you are! My parents were older when they had me so I faced caregiving duties a bit younger than most in my generation. Women especially are vulnerable to being forced to leave the workforce to provide family care, which has a ripple effect not only on one’s current financial situation, but also for retirement savings. This is what I now have to contend with as I’m way behind in saving for retirement, while also facing a risk that the government will not continue to fund Social Security at its current levels by the time I reach eligibility. Gen Xers on the older end of the spectrum are also reaching an age where we will face more age discrimination in the workplace. So the ability to make up lost financial ground becomes even more of a challenge.

Listen to Rodger That on Apple Podcasts

Millennials and Gen Z members also can find themselves facing an unexpected family care crisis that requires them to derail their life plans just as they are becoming independent young professionals. Long-term caregiving situations can cause one to postpone having children or making career changes. The pandemic has thrown a wrench into just about everyone’s life, with even more people taking on caregiving responsibilities with little to no experience.

There are also positive takeaways, as some members of younger generations are embracing aging issues. From intergenerational roommate services to apps and services being developed by younger people to help improve the quality of life of our elders, there is hope that our youth will continue to embrace these noble goals as they age. It indeed takes a village.

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Book review: Conversations Across America

Image courtesy of author.

I had the recent pleasure of receiving a review copy of Conversations Across America by Kari Loya. It’s an insightful look not only at a father-son relationship dynamic after the father is diagnosed with Alzheimer’s, but also a visual and cultural snapshot of America.

There is much to find inspiring about the book. How many of us would be in good enough physical shape to bike across America? I know I wouldn’t and the fact that his father is able to do so while in the early stage of Alzheimer’s is admirable. The obstacles that the father and son duo face on their long journey mirrors the challenges one faces on the dementia caregiving journey. The open road facilitates difficult but necessary conversations between father and son.

The other component of the book offers photos and quotes from people Loya and his father meet along their journey. There is a diverse mix of voices and you likely will not agree with all of them, but it does offer some insight into how we ended up where we find ourselves now. Out on the road, random acts of kindness are not only welcome but necessary. Time and time again, strangers rise to the occasion.

Ultimately, Conversations Across America is a love letter to his father, the natural beauty of the country and the helpfulness and resilience of those living in small towns. It’s a coffee table book with a conscience.

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I’ve written a children’s book!

I’m excited to announce that I have written a children’s book, Slow Dog. I never expected to write a book for kids, but my rescue dog Murphy inspired me to take the leap.

Sometimes it’s rewarding to step outside of our comfort zone and look at life from a different perspective. When I adopted my senior mixed breed dog Murphy, I knew one of the challenges for me would be to adjust my fast-paced life to his decidedly slow-paced one. It was a deliberate choice as I knew it would benefit my overall well-being.

While Slow Dog doesn’t have any specific ties to dementia, it does celebrate moving at one’s own pace. That’s a helpful lesson for all caregivers.

Slow Dog is available in paperback and e-book formats on Amazon. Part of the proceeds will benefit metro Atlanta animal rescue organizations.

A big thank you to illustrator Lana Lee who captured Murphy’s special spirit so well.

Murphy with his book, Slow Dog.

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Complex relationships can complicate grief

With the passing of Queen Elizabeth and marking the 21st anniversary of 9/11 this weekend, I thought it would be a good time to discuss the complexities of the grieving and mourning process. As humans we often crave a blueprint for navigating difficult times. But as a recent article from Next Avenue points out, “Grief isn’t organized; it’s a mess and a natural human experience. There is no ‘normal’ way to grieve.”

I delved into the complicated relationships I had with my parents and how that impacted my grieving process in The Reluctant Caregiver. Diseases like dementia can also leave loved ones feeling conflicted; one may feel feel relief that their loved one is free of such a terrible disease yet still deeply mourn the person’s death.

Others may mean well but how one processes grief is an individualized process. What may seem “normal” for one person may be inappropriate for another. It’s also important to remember that there are many nontraditional family structures now and that we live in a time when people are more encouraged to share and process their family trauma.

For those who are grieving the loss of someone who they had a complicated relationship with, allow the feelings to flow naturally and try to ignore any societal expectations. If you would like help navigating the challenging journey, consult a therapist, grief counselor or grief support group.

Photo by Mike Labrum on Unsplash.

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