Watermelon babies

I was enjoying some watermelon this morning and it reminded me of a funny story from my mother’s childhood. The family was gathered around, enjoying slices of watermelon when one of my mother’s older siblings warned the others to be careful not to swallow a watermelon seed, otherwise they’d grow a watermelon baby inside their tummy.

While the rest of the family got the joke, my mother did not. She began to worry that she had accidentally swallowed a watermelon seed. She became upset enough that she went to her mother who set the record straight and assured her there were no dangers of melon babies. Nowadays, kids could just Google it or ask Alexa.

The extreme and unusual heat wave that struck parts of the U.S. and Canada recently serves as a reminder to check in on our elder loved ones and make sure they have sufficient relief from the summer heat. Here in the Deep South, we tend to take air conditioning as a standard necessity, but other parts of the country that typically have moderate summer temperatures don’t always have AC units. I learned that the hard way at my parents’ condo in New Mexico. Even with a modern, high-powered fan, it was miserable. While it was merely uncomfortable for me, for those who are older or with certain health conditions, the heat can be life-threatening.

I hope you have a peaceful and pleasant Fourth of July and get to spend time with loved ones.

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George Romero’s ‘The Amusement Park’ an unsettling, revealing look at ageism

A “lost” film from the late, great horror film director George Romero was released this month and has people talking about its contributions to ageism and how society treats its elders.

Romero is perhaps best known for the zombie classic, “Night of the Living Dead.” In the early 1970s he was commissioned by the Lutheran Society to create a PSA of sorts that would deal with ageism and society’s poor treatment of older people. The organization was displeased with Romero’s surreal yet gritty take on the subject matter, so the film was shelved until recently, where it is now streaming on Shudder.

I found the film to offer a more accurate take on what it feels like to grow old in this country than one might think at first glance. The film follows the main character as he navigates his way through a bureaucratic nightmare of an amusement park, where elders find themselves charged exorbitant prices, banned from certain rides and harassed as nuisances. There is a speech by the main character at the beginning of the film that offers this ominous line: “Remember as you watch the film, one day you will be old.”

It’s sad to say that in the decades since this film was made, we haven’t progressed that far in the way we care for our elder population. The release of this film now as we grapple with the fallout from the pandemic only reinforces the importance of elder care and how it reflects upon a society.

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Celebrating fathers and all male caregivers

This Father’s Day weekend, I hope you will be able to celebrate the fathers, father figures and male caregivers who have made a difference in your life.

My father adored me as a baby and while we grew apart a bit as I grew older, I always knew he loved me. I only wish I could have returned the favor more at the end of his life, but even through the fog of dementia, we were able to communicate with one another and demonstrate the strong father-daughter bond that had been there all along.

As this past year has taught us so painfully, we can never take moments to express our love for granted. Happy Father’s Day to all who provide care for others.

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Thoughts on the FDA approval of aducanumab to treat Alzheimer’s disease

Alzheimer’s was in the spotlight this week due to the FDA’s controversial decision to approve the drug aducanumab for treatment of the disease. I’ve closely followed the debate and can understand why some hope this is the breakthrough drug we’ve all been waiting for while also agreeing with critics who question the FDA approval process for this drug due to the limited evidence of its effectiveness in trials. There’s also the hefty price tag to consider.

Choosing whether to take a medication or undergo a treatment is a personal decision that should be made with the consult of family and trusted physicians familiar with the individual’s case. Below I’ll go over some general takeaways to consider. If you know of someone who was in the trial I’d love to hear about their experience.

Target treatment group: Aducanumab has so far only been studied in people living with early Alzheimer’s disease and mild cognitive impairment (MCI) due to Alzheimer’s. The FDA approval will allow it to be prescribed to those at any stage of the disease.

How it works: Aducanumab targets the amyloid beta plaque in the brain with the goal of reducing the plaque buildup and slow the rate of cognitive and functional decline.

How effective is it? This is where the main controversy arises. Biogen, the maker of aducanumab, was only able to provide very modest evidence that the drug offers a tangible benefit. “The average degree of improvement on a 0-18 point cognitive scale was just 0.39 points relative to placebo, far smaller than the 1 or 2 point threshold typically used to define a clinically important difference,” according to the two physicians who wrote this Washington Post opinion piece. Trials of the drug were halted in 2019 because an analysis concluded the trials were unlikely to be successful in hitting their goals at completion. But months later, after analyzing a wider set of data and discovering the nominal improvement, Biogen announced it was seeking FDA approval of aducanumab, CNN reported. After an FDA panel voted overwhelmingly to not recommended that drug approval move forward, the FDA eventually greenlighted aducanumab.

The drug was granted Fast Track designation and approved using the accelerated approval pathway, which only requires a “reasonably likely to predict a clinical benefit to patients” and also requires a post-approval trial to verify that the “drug provides the expected clinical benefit.”

What are the side effects? The most common side effects of aducanumab  were “headache, fall, diarrhea, and confusion/delirium/altered mental status/disorientation,” according to the FDA. Brain swelling was also reported by some trial participants.

How expensive is it? Very expensive. The drug is expected to cost $56,000 per year. Part of the expense is in how the drug must be delivered, via infusion every four weeks. There may also be expensive imaging tests required to begin treatment. While insurance companies are expected to pay for some of the cost, it is unclear how much Medicare will reimburse, CNN reported.

What are the general expectations? Those who take aducanumab may see modest improvements in cognitive functioning or see a reduction in the speed of decline in cognitive functioning. It’s important to note that while the drug may remove amyloid plaque from the brain, that doesn’t guarantee an improvement in cognitive functioning. Advocates see it as a treatment with potential, but not a cure. Aducanumab is the first drug to treat Alzheimer’s disease that the FDA has approved since 2003. It has been a long wait, and that is why the drug’s approval has been met with a mixture of hope and skepticism.

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‘Duty Free’ a moving documentary on ageism, caregiving and economic insecurity

There are so many excellent documentaries about caregiving that have been released over the last few years and I’d like to highlight a recent entry, “Duty Free.” It’s about a woman named Rebecca who gets fired from her job at age 75 and is facing a dire housing and economic situation while caring for a son with mental health issues. Her other son, a young filmmaker, uses the challenging moment as an opportunity to help his mother complete a bucket list of adventures and experiences she never got to enjoy as a single immigrant mother raising two children. What transpires are moments of joy and heartbreak as Rebecca forges a new path for herself while addressing her past.

I found this documentary to be very moving while spotlighting an issue that more and more elders find themselves facing. Retirement is becoming less of a certainty as rising economic insecurity means more and more older people will continue to work their entire lives. Rebecca immigrated to this country when she was young and worked hard all of her life in the hotel industry, working her way up to a supervisor position in the housekeeping department before being fired at age 75. Her housing arrangement was also nullified as the result of her job termination, so Rebecca was facing dual hardships. We know from studies that starting around age 50, women in particular find it much harder to secure employment or move forward in their careers. At Rebecca’s age, though she is still vibrant and physically active, the job search is even more grim.

The film also is about caregiving, as Rebecca financially supports her son who has schizophrenia and is unable to work. So many older people find themselves supporting their adult children for a variety of reasons, and that adds to their own economic insecurity. Her other son, Sian-Pierre, is limited in financial resources but does offer something priceless, which is encouraging his mother to do all of the things she never had time to do while raising children and documenting his mother’s story for the world to see.

I encourage you to watch this film and share with others. If you have seen it, I’d love to hear your thoughts.

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Having conversations about health care wishes more important than ever

Photo by LOGAN WEAVER on Unsplash

I hope you and your loved ones are able to reconnect in person this Memorial Day weekend. More opportunities to spend time with our elders abound with Father’s Day and July the 4th. Enjoy these special moments together, but also put this time to good use by having “the talk” about your loved one’s health care wishes.

Recently the University of Michigan published results of a poll that found COVID-19 had not prompted a significant increase in family discussions about what to do if one is struck with a severe illness or facing end-of-life care. If a deadly pandemic doesn’t prompt such discussions, then what can?

I understand how difficult these conversations can be. In my book, The Reluctant Caregiver, I discuss the challenges I had in initiating these discussions with my own parents. But I also talk about how my parents’ reluctance to make end-of-life care choices came with significant consequences for our family when they became ill. That is why I champion so passionately for everyone to have these talks and make these important health care decisions so your loved one’s wishes (and your own wishes) can be honored.

If you need assistance getting started, refer to the helpful resources section at the end of the University of Michigan Health Lab article. I also recommend Five Wishes. For those who have successfully had “the talk” with their loved ones, I’d love to hear your approach.

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Reflecting upon older losses in a period of raw grief and renewal

Today marks six years since my mother’s death. I have to say that Mom had an uncanny sense of timing for her departure from this earth. The world has faced a series of challenges over the last several years that has left a path of death, destruction, and fractured relations that I’m glad my mother did not have to live through.

Now many of us find ourselves teetering between anticipation about establishing a new normal while mourning the losses that have piled up. And of course there are those like myself, mourning pre-pandemic losses of loved ones. It’s an odd mix of emotions; one may feel guilty about experiencing the joy of reunions while others have yet to bid a formal farewell to their loved ones while the pandemic rages on in India and other parts of the world.

My mother was the eternal optimist, to a fault in some cases, as I write about in The Reluctant Caregiver. I am more of a realist with pessimistic tendencies, but I do believe that the best antidote to the last several years of chaos and upheaval is by embracing whatever brings us joy. Give yourself grace and let go of whatever pain you can. My mother and I had a difficult relationship in ways because of our contrasting personalities. With the passage of time, I now can better focus on her positive attributes, including those I embrace in my life, such as her love of animals and nature, her sense of humor, and being kind to those in the service industry.

I hope you are able to find some sense of peace during this unusual period of grief and renewal.

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Study suggests Alzheimer’s develops in 4 distinct patterns

A recent study found that the spread of a key marker for Alzheimer’s develops in four distinct patterns, each presenting with a specific set of symptoms. The findings could help provide more targeted treatment for Alzheimer’s in the future.

An article in Genetic Engineering & Biotechnology News offers a good overview of the study. Researchers focused on the spread of the tau protein in the brain, which has long been a key marker for Alzheimer’s. Studying the PET scans of approximately 1,600 individuals in relation to tau pathology, researchers found four distinct patterns:

  • Variant one: Found in 33 percent of cases and primarily affects the memory. The tau spread was mainly found in the temporal lobe.
  • Variant two: Found in 18 percent of cases and targets executive functioning. Tau spread was in the rest of the cerebral cortex.
  • Variant three: Occurring in 30 percent of cases, this variant targets the visual cortex, leading to a variety of visual processing issues.
  • Variant four: Found in 19 percent of cases, this variant spreads in the left hemisphere, leading to issues with one’s language ability.

I thought these were intriguing findings. Of course more research is needed in this area to confirm the findings of this study and learn more about the variants. But these finding could eventually lead to better, more targeted treatment for the specific variants of Alzheimer’s disease.

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This Mother’s Day, reach out to those who are grieving

My mother’s last Mother’s Day in 2015.

The COVID-19 pandemic has left thousands of Americans motherless this year. One model shared in a study published in JAMA Pediatrics suggested the number of children who lost a parent due to the pandemic could be as high as 40,000, a staggering amount in just a year’s time span. On the other end of the spectrum, adult children grieve their elder mothers who died during the pandemic, some who must grapple with the extra pain of not being able to properly say goodbye.

Having lost both of my parents, I do find that Mother’s Day is harder for me emotionally than Father’s Day. I believe this is because my mother died in the month of May, just a couple of weeks after the holiday. My last memories of her before she became bedridden was reading her Mother’s Day card and admiring the fresh flowers I bought for her. Even though this year will mark six years since her passing, those bittersweet memories are still the first to surface when I’m reminded of Mother’s Day via the endless online ads and TV commercials.

I found this essay by Carol Smith on grief and the myth of closure to be compelling and moving.

For those whose mothers are still alive and perhaps will be seeing in-person for the first time in months due to the pandemic restrictions, I am so thrilled for you and I hope you have a wonderful reunion. We know now more than ever that each moment with loved ones is precious.

If you have a friend who may be grieving the loss of their mother, reach out and offer support in whatever way is meaningful to them. It can be a lonely holiday for those whose mothers are no longer alive, and acknowledgment from caring souls can mean so much.

In honor of Mother’s Day, AlzAuthors is offering free Kindle copies of our first anthology Alzheimer’s and Dementia Caregiving Stories: 58 Authors Share Their Inspiring Personal Experiences.

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A time of bittersweet reunions

May has arrived, and with it, a swirl of varied emotions. The world is beginning to open back up, which of course is a good thing. Now that I’m vaccinated against COVID-19, I’m also beginning to venture back out. There’s a strange mix of novelty in doing the most mundane of tasks, but humans are resilient and adaptable and a “new normal” will be established.

There is hope in the air, but May is also a month of loss for me. It will be six years since my mother died, and my beloved cat Nod crossed the Rainbow Bridge last May. Watching the Kentucky Derby yesterday made me think of my mother. Watching the race was the last happy moment we had together.

Many families are experiencing bittersweet reunions with their loved ones who have been isolated in nursing homes during the pandemic. Of course they are thrilled to visit their family members in person, and some can now hug and hold hands with their loved ones. But the toll the past year has taken cannot be denied. This moving New York Times photo essay captures the raw mix of emotions sparked during these long-awaited reunions.

Best wishes to those of you reuniting with your loved ones. If we’ve learned anything over this last year, it’s how precious those moments are and how we can never take them for granted again.

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