I admit my memory ain’t what it was. Just like when I see a new bump on my arm, my default reaction is “It’s cancer.” Similarly, my memory burps often elicit an “OMG, I’m getting Alzheimer’s.” And my panic has some real roots. According to the Alzheimer’s Association (alz.org), an estimated 5.3 million Americans of all ages have Alzheimer’s disease. This disease with no cure has had an absolutely devastating impact on families. It behooves us all to get friendlier with — and even embrace — the idea of Alzheimer’s. It simply needs more attention and funding for finding cures. Period. Open your wallets and hearts, please.
Enter Shari Darling and Jack Schropp, a married couple committed to demystifying Alzheimer’s for families all over the world. Shari combs the literature and every avenue for ways to generate relief. They are open to traditional Western as well as “alternative” approaches. Shari has now written two books about which foods she has cut out of Jack’s diet that seem to exacerbate or slow down his disease. Shari has also become expert at watching for breakthroughs in medicines that slow down the effects of the disease. This is no small deal; the symptoms of Alzheimer’s can be not only the well-known memory deterioration but go all the way up to violence against family members and strangers.
I was recently contacted by Shari, who is the caregiver of her Alzheimer’s-diagnosed husband, Jack. I mention their association with Landmark Worldwide, a personal development company, because he’s a retired Landmark Forum leader and I’ve been active in that community for decades. They both want to use their journey to make it less terrifying for others in the same boat. Contacting me was a step toward being public due to my column.
Landmark Forum leaders are at the top of the intellectual food chain. Jack is a brain sensei, a gold medal thinker, a Mt. Everest noodler. Forum leaders guide abstract and deep conversations with thousands of people a year that explore the profound concerns all of us share about our lives; family, loved ones, careers, legacies and whether our lives are being spent at the level of integrity and vision we dreamt of before resignation and cynicism set in. In other words, people don’t show up at the Landmark Forum to talk about the weather. Couple Jack’s Forum cred with being an ex-SEAL team member in the 1960s and ’70s and you get an intense fellow with an extraordinary and passionate background.
Considering all that, it is not a surprise that Shari and Jack have decided to put their journey with Alzheimer’s in full view, through the uncertainty and fear too.
Jack and Shari both wanted to speak to me, so we Skyped (a relatively new verb to me). I simply had to start my interview with an admission on my part: I felt shy about talking to someone about a disease that is at once heartbreaking, vastly underfunded, mystifying and terrifying. I explained that the subject felt too intimate and that I thought talking about it was not a polite thing to do.
How do Shari and Jack handle people’s bashfulness about Alzheimer’s? Jack said, “I just tell them I have it.” No beating around the bush, just unfiltered straight talk. Shari is just as direct in her partnership with Jack.
I asked if there were benefits to Alzheimer’s that they hadn’t considered before. Yes. They are both profoundly in touch with the importance of NOW, NOW, NOW. This is relevant to everyone and especially to anyone living with Alzheimer’s. Perhaps embracing NOW has been fundamental to Jack and Shari’s ability to often bring joy to their experience.
I was really taken by Shari’s articulation of being with Jack as a “translator,” for lack of a better word. She knows that Jack’s aphasia — the loss of memory or a word — can be an upsetting cause of frustration. She listens for the missing word or thread and supplies it for him. She was quick to note that his intelligence hasn’t flown the coop; there are for now gaps in expressing the word or idea he’s searching for.
Perhaps the knee-jerk reaction for many people is to hide someone who has the diagnosis. Shari and Jack take the opposite route and have dinner parties where everyone is onboard with including Jack in the conversation. Yes, sometimes Jack loses words or gets off track. So what?
These were my main takeaways from the discussion with Jack and Shari about what to do if you or a loved one receives an Alzheimer’s diagnosis.
1. Be straight with people: “We live with Alzheimer’s” is nothing to be ashamed of.
2. Stay active with the people you love; don’t isolate them or yourselves.
3. Share your process.
4. Get help.
5. Demand more and faster research.
After speaking with Jack and Shari, I am grateful that they are as open as they are so I know there are people ready to openly confront a disease that many of us would rather forget. n
Ellen Snortland teaches writing in Altadena and is currently making a movie. Contact her at snortland.com.