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.
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.
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.
Thinking of Dad today and what it would be like to take a long walk in the park with him and discuss all of the troubles happening in the world right now.
Hope you get to spend quality time on this Father’s Day with your fathers or those who serve as father figures in your life.
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.
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.
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.
As the weather begins to warm and flowers bloom, it’s a good time of year to consider increasing physical activity. A new study suggests that even a small amount of moderate to vigorous physical activity each week can lower dementia risk by a significant amount. The benefits were also seen for older frail adults.
According to researchers from Johns Hopkins who conducted the study, as little as 35 minutes of activity per week helped to lower dementia risk. Each additional 30 minutes of activity was associated with a 4 percent reduction in dementia risk, according to study findings. The Physical Activity Guidelines for Americans recommends at least 150 minutes of moderate intensity exercise per week, which is an average of 20 minutes per day. While that may seem like reasonable guidelines for those in good to average health, for older frail adults, it may be more of a challenge.
My father’s love of walking didn’t prevent his dementia, but it probably did contribute to him maintaining a healthy weight throughout his life, which has a myriad of benefits.
Walking of course isn’t the only exercise that counts towards physical activity recommendations. In some areas of the US, it’s time to get out in the garden. I’ve found yardwork to be a surprisingly good workout. If springtime pollen allergies are too much for you, doing an indoor spring cleaning can be a rewarding physical activity. For older frail adults, there are chair exercises that can be done to support flexibility and reduce fall risk. Yoga and water aerobics are other gentle forms of exercise that can be modified to safely accommodate a variety of physical limitations.
Hope you can find enjoyable ways to be active while welcoming springtime in your area.
If you’ve ever attended an improv comedy show, you know that part of the fun is the unexpected ways the skits unfold. Each show is a bit different, based upon the contributions from the players on stage as well as the audience.
Now think about having a conversation with a person with dementia. It may go in unexpected directions. You have to think on your feet about how to respond. Politeness may go out the window; humor, whether intended or not, may present itself. Sometimes conversations may run off the tracks altogether, or into a darker, angrier place, and you’ll need to deploy distraction and redirection techniques.
As a dementia caregiver, you may not have considered the improvisation skills you’ve been implementing in daily communication, but geriatric professionals have taken notice. Where I live in Atlanta, there’s an organization called Improving Through Improv that has a program dedicated to facilitating communication between those with dementia and their caregivers.
A common improv technique is using “Yes, and …” as a bridge between recognizing what the previous person said and then adding to the conversation. One can either build upon what the previous person said or take the conversation in a different direction. The idea is to keep the communication moving forward in a positive manner. For those with dementia, the simple “yes” affirmation may be meaningful and effective, as they may have to deal with other people who constantly correct their mistakes.
Many family members who care for loved ones with dementia find it difficult to let go of a strict sense of reality; my mother struggled with this when caring for my father. She would always correct my father when he said something that wasn’t true, which only left him more confused. For some caregivers, giving in can feel like they are losing their minds too. By using “Yes, and …” caregivers can acknowledge their loved one’s viewpoint without having to agree and remain empowered to steer the conversation forward.
One of the most difficult aspects of dementia caregiving is accepting the fact that while your loved one may look the same, they may be moving in a different reality. “Meet them where they are,” is one recommendation for dementia caregivers, and deploying improv techniques can help in bridging the gap and building a new way of communicating.
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.
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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The Memories Project 