When the Alzheimer’s Advocacy Field Office was mentioned to me, I wasn’t expecting to start it off with some gardening. And yet there I was on the patio of the FlatPak house on the 24th of June, shoving small cacti into pots as my hands steadily turned into Swiss cheeses. Well you know what? An up-close encounter with some of the strongest plants alive may have been a pretty fitting prelude to the session of the day.
Just to clue you in on what Field Office is, a brief explanation: it’s a weekly opportunity for the Education and Community Programs staff to explore their interests together with the public and, 1 more importantly, to escape the freezing, fluorescent-lit confines of our cubicles. No one-way lectures, don’t worry. It’s all about connecting, sharing and learning in a relaxed environment – the FlatPak in the Minneapolis Sculpture Garden.
This time, the ECP staff were happy to take a step back and have the members of the Early Stage Advisory group take over. Jim Engel, Ken Lehmann, Mike Tracy, Earl Reiland, Lucy Rice, Mary Margaret Lehmann, Jerilynn Hanson, Julie Allen and Dick Wagner were our esteemed guests, present to host a session on living with early-stage dementia. Also attending were Michelle Barclay, Vice President of Programs at the 2 Alzheimer’s Association, Carolyn Klaver of the Gathering with Lyngblomsten and Sara Tucker, an art therapist who spearheaded the Art Institute of Chicago’s program for memory loss and now works with Michelle at the Alzheimer’s Assocation.
Once everyone had settled themselves in, Sara broke the lull with a quote from Jim Engel, one of the members.
“ You have to understand. Life doesn’t stop at diagnosis. This group is a testament to how you can live with the disease. It’s the time of my life. I enjoy it.”
Jim’s words were strikingly spirited, summing up what seemed to be the motto of the group. These people are no shrinking violets. In addition to raising public awareness about Alzheimer’s and the lives of those affected by it, this intrepid team of heroes provides information and emotional support to the newly-diagnosed, most of whom have poor access to educational resources. They also attend conferences, participate in rallies, and serve as 3 mentors to those who need guidance in dealing with early-stage Alzheimer’s. The underlying idea? To empower through education and solidarity.
Phone calls may be one of the more unassuming ways to help, but never underestimate how much a well-timed one can do. More often than not, the Early-Stage Advisory group’s helpline becomes something of a lifeline as well. The terror of dealing with a disease swells tenfold when you are not only left to find your way in the dark, but are forced to do so alone. Earl understands this perfectly.
“ I start out by talking about myself a little, which gives us an opportunity to connect.” He said, describing how he prefers to open his phone conversations. “ Listen to them, because they really need a chance to talk to you and tell you how they feel. At the end of the day, that can be more important than what we have to say.”
Despite the prevalence of Alzheimer’s, misconceptions regarding its causes, symptoms and development run abound. The sad reality is that these mistaken assumptions often breed behavior that marginalizes despite its best intentions. Keeping this in mind, Sara asked the group:“ When coming into contact with the public, what would be something you’d want to say or ask? What would be the one thing you’d want them to take away from the encounter?”
“ We’re person-first. A person with Alzheimer’s. Not an ‘Alzheimer-ish’ person. Honor each one of us as an individual while remembering our challenges.” replied Mary in a sobering reminder that they are more than the disease. Remaining on that note, Ken mentioned that one of the risks of coming forward about one’s condition was facing the prospect of being reduced to a label.
The trouble is, keeping the disease a secret is like trying to hold a stream of water back with your bare hands. As Mike later explained: no matter what you do, the onset of the disease will begin redefining and restricting a lot of your daily activities. It will reveal itself in the long run even if you choose to not talk about it.
But hey, this inevitability doesn’t have to entail life without a little bit of zest. Once after attending Mass, Mike walked into a room full of crying friends who had just found out about his situation. To the horror of everyone present, he drooled.
Okay, so the drooling turned out to be a joke, much to the relief of his teary-eyed friends. But behind its playfulness lay a profound principle, one to which Mike holds with unfailing determination until this very day. “ Humor got me through this,” he said with eyes full of moxie. “ If I don’t laugh several times a day, something’s wrong.”
A solid sense of humor is one of the best ways to get through tough times, but there’s another great means to make one’s struggle a smoother ride. “ You know, the stigma’s going to be around for awhile. So let’s own it and redefine it.” Michelle suggested, referring to harmful preconceived notions about people with Alzheimer’s. “ When people are insensitive in interactions, take it as a chance to re-educate through counter-suggestions.”
It’s no picnic to grin and bear tactless remarks, no matter how well-meaning they are. But the group found that being patient and flexible with the way they express their needs helps more than aggressively trying to dictate how people should behave. As Jerrilyn astutely pointed out:“ We can’t control what people say to us and what they find meaningful, but we can change how we contribute to the conversation.”
There were quiet nods of agreement, and then the discussion shifted to the issue of early diagnosis. Within a few minutes, everyone had reached a consensus: it’s wiser to deal with a difficult truth as soon as possible than unknowingly fumble through the years.
“ It may feel better at first to dwell in ignorance, but later on, you might make a lot of choices that aren’t based in reality and end up being quite harmful in the long run,” warned Michelle. “ We see people just living from one crisis to another with no informed plans, husbands and wives treating each other poorly due to a lack of understanding.”
I looked at the faces around me, struck by how different the group members were from what Michelle had just described. Even though each day brings new struggles with a formidable neurological disease, these people don’t stumble around in a daze while waiting for life to get better. In them resides an unshakeable fortitude that springs not only from their love for life, but also their indomitable will to tackle every setback with wisdom and candor. In short, the word we’re looking for here is ‘bad-ass’.
After the discussion closed, some of us adjourned to a shady spot right outside the FlatPak house for a commemorative group photo. While getting the camera ready, strains of suspicious laughter trickled through the air.
And sure enough – the minute I counted to three, the members of the advisory group suddenly sprang forward with their arms outstretched. As I snapped the shot, Jim’s words echoed faintly in my ears. It’s truer than we think, that lives don’t have to end at diagnosis. In a lot of ways, theirs are just beginning.
1 Just kidding. Really.
2 Besides a website, they also have a twitter feed.
3 Getting a mentor is quite straightforward: just call their 24/7 helpline at 1.800.272.3900. Someone will pass you a recommendation and, with your approval, give you a date and time for meetings.