Happy Mother’s Day to mothers of all kinds. I will be holding space for all of us whose mothers are no longer here.
On a related note, congratulations to Katie Engelhart, contributing writer for The New York Times Magazine, who won a Pulitzer Prize for Feature Writing for The Mother Who Changed: A Story of Dementia. With compassion and clarity, she shared this family’s complex and fraught journey with dementia. The piece raises important ethical and moral issues that should be discussed.
In case you missed it, I’m sharing again a poem about my mother that was published by The Prose Poem earlier this year. “Her Lists” is my way of coming to terms with some of my mother’s more eccentric qualities. Below is an example of one of her lists for reference.
Recently, Bloomsbury Publishing released a final message from author and dementia awareness advocate Wendy Mitchell, who died earlier this year. I encourage you to watch the video, in which she so eloquently explains her decision to take agency over the end of her life.
In the video, she speaks so poignantly about those with dementia working so hard to present as “normal” in public and the toll that takes on a person over time. This can apply to other conditions as well, such as depression. We could all learn a lesson here, by being more compassionate when encountering others whose struggles may not be readily apparent on the surface.
Hurricane season officially begins June 1, and tornadoes are already ripping a path of destruction across parts of the U.S. Summer will bring an increased threat of wildfires, extreme heat, and storms that produce flooding. Managing caregiving tasks can be difficult even on a normal day, let alone during a severe weather event.
This is my annual reminder to make sure you and your loved ones are prepared for severe weather events. Growing up in California, I learned about earthquake safety both at school and home. When my parents retired to Ruidoso, New Mexico, they learned about the threat of wildfires. In Georgia, I deal with flooding and power outages due to thunderstorms.
Being prepared and having a plan is critical. The American Red Cross offers good tips on preparing for severe weather events. The Alzheimer’s Association offers an emergency preparation resource for those caring for loved ones with dementia.
Keep a printout of important information, such as phone numbers, medical history, prescriptions, etc. in case you lose power and your devices die.
Create a well-stocked first aid kit, personalized for any specific medical needs
Maintain a power source. Keep extra batteries on hand for flashlights and emergency radios. I keep a mobile generator for short-term power outages so that at least I can keep my phone charged. I set a monthly reminder to charge it to make sure it’s fully charged in case of an emergency. It also came with solar panels as an alternative charging option. If you can afford it, a larger generator that can power medical devices could be a life-saving choice.
Create an evacuation plan for loved ones, taking into consideration their medical needs. Make note of local resources that may be able to assist with things like transportation, temporary housing, etc.
Don’t forget about the pets. Loved ones may be reluctant to leave their home if they think they will have to leave their pets behind. Research pet-friendly shelters and hotels.
Make sure everyone understands their role in a severe weather event, from care recipients, to hands-on caregivers to long distance caregivers. Communication is key.
Have a plan in place if your loved one’s home is destroyed by a severe weather event.
A new study suggests that the type of work on does over the course of their life could impact their risk of cognitive decline and dementia.
The study, published in Neurology, tracked and analyzed the health and occupational data for 7,000 Norwegians over a roughly 30-year period. The individual’s occupation was categorized by researchers based upon its cognitive demand: for example, a factory worker’s repetitive tasks vs a doctor’s more complex duties. Teacher was the most common occupation in the higher cognitive demand category.
The study found that those with routine jobs were linked to a 66% higher risk of mild cognitive impairment and a 37% greater risk of dementia compared to those with jobs that were more cognitively demanding. As has been found in other studies, higher education offers a cognitive health protective benefit, offsetting some of the negative impact from repetitive jobs.
My father worked as a freight checker most of his life, a physical, blue-collar job that was repetitive in nature. In his later years, he worked as a security guard, which offered little mental stimulation. While my father didn’t have a lot of formal education as an adult, he was self-taught in areas he cared deeply about by being a voracious reader. He read deeply complex topics such as war strategy.
While the study’s findings are interesting, people have lives beyond their career choice. Some people may choose a routine job to pay the bills, so they can save their energy for hobbies such as playing a musical instrument or chess. My job requires a great deal of data analysis, and I also enjoy word puzzles and jigsaw puzzles.
We know that dementia can strike anyone, regardless of occupation. It makes sense to engage in mentally stimulating activity on a routine basis, whether it’s at work or a hobby.
I had a work trip this week that took me to New York City for the day. It just so happened to fall on what would have been my father’s 92nd birthday. It was nice to be able to mark the occasion in the first city my father lived in after immigrating to America.
While it’s been almost 70 years since my father walked the streets of the Big Apple, the city’s nonstop energy remains. I can only imagine what my father felt walking these streets, gazing up at skyscrapers, and being part of a community filled with a wide range of cultures and languages. As a young man with his whole life ahead of him, it must have been exciting and likely a bit overwhelming.
On my flight back home, a couple of strangers struck up a conversation and the topic turned to Alzheimer’s. Both were caring for people with dementia, with the man saying he cared for three gentlemen who were younger than him. I find that the amount of people whose lives have been touched by Alzheimer’s has grown a great deal since my father died in 2011.
A short film by the UK-based Alzheimer’s Society has generated a wide range of strong emotions from those with dementia and their families. In addition to the original video campaign embedded above, there is also an extended cut version and a profile of a couple who faced a heartbreaking FTD diagnosis.
The crux of the criticism comes from the film’s fatalistic point of view, framing dementia as a series of deaths that occur when a person loses the ability to do something they loved or remember something fundamental to their life, such as remembering their child’s name. With these series of “deaths”, one will need an organization for support, which is where the Alzheimer’s Society says it will be there for families impacted by dementia again and again.
George Rook, a patient activist living with dementia, has posted his eloquent rebuke of the film on his blog. It’s garnered a lot of support within the dementia community, and he has since written more posts related to the film that I encourage you to read.
The Guardian also wrote a column about the controversy, with the columnist agreeing that the film is uncomfortable to watch and concluding that “the advert went too far, but that one of the many issues with the public discourse about dementia is that it can be overly sanitised.”
Below is the Twitter/X post from the Alzheimer’s Society which I’m including so you can read the replies. As you can see, the video sparked a passionate discussion from those living with dementia who felt personally offended that they were being portrayed as the living dead when in fact they are living with dementia reasonably well.
In the Alzheimer’s Society response to the video’s controversy, it states the need for a societal wake-up call when it comes to dementia. It’s the leading cause of death in the UK and according to the organization, only 10 percent of people are aware of that sobering fact. I know I was not aware of that statistic.
If you’ve read my book, The Reluctant Caregiver, I think you’ll know my take on the film. While I can understand some may find the tone of the film harsh, I do agree with the need for a wake-up call. That’s why I wrote about the difficult moments in my caregiving experience, even if that has led to some reviews that the book is depressing.
In the US in particular, the financial impact of dementia is something many people are woefully unprepared for as they think Medicare will cover expenses. People don’t fully appreciate the challenges of living in place nor are they prepared for the astronomical cost of memory care. As for the “series of deaths” a person with dementia may experience, there is a real sense of loss when the disease takes away people’s abilities and aspects of their personality. As I wrote in my book, it did feel like an imposter had taken over my dad’s body. When he looked my mother straight in the eye and asked where she was by name, the heartbreak I experienced was worse than when I viewed his body in the morgue.
My mother dealt with the brunt of my father’s dementia. From what my mother, the eternal optimist, told me, there were not many good days. I’m sure she didn’t even share all of the horrific moments, though some she couldn’t hide, like when my father punched my mother in the jaw as she tried to get him ready for bed.
Once he was heavily drugged in the memory care center, his aimless shuffling through the hallways with the lost, vacant stare in his eyes did make him seem like a zombie in some ways. I know some people may find that portrayal offensive, but that was my honest reaction at the time.
I’m encouraged by those with dementia who continue to lead rewarding lives, and if I get the dreaded disease one day I hope I will follow their example. Unfortunately, that was not my family’s experience with the disease. It not only had a dire financial impact but I’m also convinced that the toll of caring for my father played some role in my mother ignoring her own health issues and being diagnosed with stage III colon cancer just six months after his death. I live alone and don’t have children, so for those of us without a support network, thriving with dementia may be a challenge.
We live in polarizing times when we refuse to recognize that multiple things can be true at once. There are some people living well with dementia, and maybe that should be the focus of the Alzheimer’s Society’s next awareness campaign. Kudos to these people and we should all be working towards the goal of improved treatments and better support resources so that living well with dementia becomes the norm and not the exception. But there are also those whose lives, and their family’s lives, are devastated by dementia. Those stories should not be buried because they make some people uncomfortable.
Each person with Alzheimer’s or another form of dementia will experience the disease in their own unique way. So will their families. We should encourage those from across the spectrum of dementia experiences to share their stories, the good, the bad, and the ugly.
I recently had a poem about my mother’s infamous shopping lists published. You can read “Her Lists” at The Prose Poem.
My mother’s lists were like a look inside her busy bee brain. It may have seemed like an oxymoron, but my mother’s chaotic organization style worked for her. That was fine until I became her caregiver and then I was the one responsible for interpreting her wacky roadmap.
I wrote “Her Lists” during a poetry workshop a few years ago. I tinkered with it just a bit since then, but it mostly came out as is on first draft. If you’ve had challenging caregiving moments that you are trying to work through, engaging with them in a creative process may be helpful. Taking a look at such moments with a different lens may be healing and provide some sense of closure.
The 2024 Alzheimer’s Disease Facts and Figures has been released by the Alzheimer’s Association. One major fact that jumped out to me was the topline figure. For years, it’s been over 6 million people in America are living with Alzheimer’s. Now we are at the 7 million threshold.
Here are other major takeaways from the report:
1 in 3 seniors dies with Alzheimer’s or another dementia.
Alzheimer’s kills more people than breast cancer and prostate cancer combined.
Between 2000 and 2021, deaths from Alzheimer’s have increased by 141 percent.
In 2024, Alzheimer’s and other dementias will cost the US $360 billion.
That cost would have been even higher if it hadn’t been for the over 11 million Americans who provided unpaid care to people with Alzheimer’s and other dementias.
Changes in speech and word recall can be among the earlier signs of cognitive decline. We’ve all experienced this, no matter what the age: “It’s on the tip of my tongue!” While not always a precursor to Alzheimer’s or other forms of dementia, it’s important to recognize changes and talk to your doctor about them.
A recent study, albeit with a small sample size of 125 people, shed new light on what is a frustrating yet common complaint among older adults: difficulty in finding words. Among the findings: “Overall reaction time for word retrieval (controlling for psychomotor slowing) was the best predictor of spontaneous WFD (word finding difficulty) and executive function decline, suggesting processing speed as the key factor, and that verbal reaction time may be an important clinical measure.”
AI software was used to extract data such as speech speed, word variety and pauses in speech, according to The Conversation report. The study participants also completed a series of tasks designed to gauge executive function ability, and the results found a link between age-related decline in executive task ability and speech pace.
The findings are interesting but of course more research will be needed with a larger study group. If confirmed, the findings could help in forming more accurate tests for cognitive decline.
With my parents before my father moved into a memory care center.
The Wall Street Journal published an article recently about the beginning of an only child boom and its impact on caregiving. As an only child, I could relate all too well to the main subject of the article. I felt overwhelmed many times during my caregiving journey, and felt the crushing weight of making life or death medical decisions on my own.
On the other hand, every time I’ve mentioned the challenges of being an only child and caring for aging parents, I’ve heard from others who had siblings but still felt like only children because their siblings refused to help with caregiving duties for their parents. Or in other cases, siblings would squabble over making decisions in the care of their parents, leading to fractured relationships. So I understand how whether being a small or large family, caregiving comes with its challenges.
One of the people profiled in the article talked about having to make a life-or-death medical decision for their mother while being in another country several thousand miles away. In the comments section, someone inquired why distance would make the decision more difficult. I can speak personally to this, as I was 1,300 miles away when I got a call the morning of Black Friday, with a nurse in rapid-fire speak informing me my dad was crashing and should they engage in life-saving measures or not. The nurse had first tried to reach my mother, but she took sleeping pills and wore ear plugs when sleeping, so she didn’t answer the phone. Now the life and death decision was in my hands.
But it really wasn’t. Over 12 years later, I still struggle with the decision I was forced to make, which was tell the nurse to keep my father alive while I tried to reach my mother. If it had been solely up to me, I would have let my father go. But I couldn’t make that decision for my mother, and I knew she would never forgive me if I had. I eventually got hold of her and my father lived about another month before dying five days before Christmas.
One of the reasons I feel so strongly about paid leave is for those like myself who find all of the parental caregiving duties falling on their shoulders. No one should lose their job because they are caring for a loved one. It’s also why I feel so strongly about respite care, as only children may not have as robust of a support system that can come with larger families.
I enjoyed being an only child and don’t regret the lack of a larger family. But as the article mentions, only children need to be vigilant about building a support system so that when an older parent has a medical emergency, they will have resources in place to help them make informed decisions about medical care, finances, and to lean on for emotional support.
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