The Blog

In Full View: Simple Rules for Living With an Alzheimer's Patient

This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email.

When I see a new bump on my arm, my default reaction is often, "It's cancer!" Similarly, my memory "burps" elicit an "OMG, it's Alzheimer's!"

Forgetfulness has a shadow that is hard to ignore. My panic has some real roots. According to the Alzheimer's Association, "an estimated 5.3 million Americans of all ages have Alzheimer's disease in 2015." For a disease with (so far) no cure that has a 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 to find 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 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 an expert at watching for breakthroughs in medicines that slow down the effects of the disease. This is no small feat; the symptoms of Alzheimer's can range from the well-known memory deterioration all the way to violence against family members and strangers.

I was recently contacted by Shari, who is the caregiver of Jack, her Alzheimer's-diagnosed husband. I mention their association with Landmark Worldwide, a personal development company because Jack is a retired Landmark Worldwide Forum Leader. I've been active in that community for decades as a student.

Both Shari and Jack want to use their Alzheimer's journey to make it less terrifying for others in the same boat; our conversations that resulted in this column is a step toward accomplishing that goal.

Why the Landmark reference at all? I'm not getting anything for mentioning Landmark; I use the association because Forum leaders are at the top of the intellectual food chain. Forum leaders, in general, ARE brainy. Jack specifically 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. These concerns include 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 his being an ex-SEAL team member in the 1960s and 1970s 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 take their journey with Alzheimer's in full view of the world, including voyages through uncertainty and fear.

What is it like to be with Jack, a man with a disease that terrifies most of us? Here's a guy who led "Socratic" conversations for hundreds of people weekend after weekend, who now grapples with the mind and its sometimes cruel tricks.

Jack and Shari both wanted to speak to me, so we Skyped. 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 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." Of course! He was a "Frogman," the slang for a SEAL during his time in Vietnam. Since then, there has been no beating around the bush for Jack. Nothing but unfiltered straight talk, whether he was leading missions or leading the Forum. 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. As it turns out, yes. They are both profoundly in touch with the importance of NOW, NOW, NOW. The concept of "now" is relevant to everyone and especially to a SEAL sneaking into enemy territory, a Forum leader, or 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 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, anyway) some gaps in expressing the word or idea for which he's searching.

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 on board 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 receive 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 they are so open and caring. They know there are people ready to confront openly a disease many of us would rather forget.

NOTE: This article is an updated and expanded version of my column in the Pasadena Weekly that originally ran on August 13, 2015