One of the best things I’ve done for myself since becoming my mother’s caretaker is to join an Alzheimer’s Support Group.
Seven months into my caretakership, I was flagging. Exhausted. Spent both emotionally and physically. I was tired all the time, in my bones and in my soul. Despite my husband’s staunch presence, and the support of a couple of local friends (above and beyond the call of duty; they are total champions and here’s a shout-out to M.J. Allaire and Ryan Twomey), I felt alone. No one could understand the daily grind of dealing with Alzheimer’s, the seeming erosion of self not only of your patient, but of YOU, the caretaker, as your entire schedule, your entire life, becomes something you don’t recognize, a bit of weirdly shifting sand or treacherous water beneath your feet. You end up feeling like you’re constantly dancing just ahead of the next upheaval, the next awful surprise, the next change that reminds you this person you care about is no longer who you (or they) remember.
I found the support group through the website for my local branch of the Alzheimer’s Association. Actually, I found two local support groups and wrote to both, but only one answered my query. Only one said, “Come and see us.”
I guess it’s a bit unnerving going to a support group of any kind for the first time. I didn’t know what to expect. Rants? Tears? Rage? Well, there was all of that and more, but it was okay because we all understood.
Dawn, our facilitator, possesses a heart as big as her head and an overflowing well of compassion. At that first meeting, I met Mary and Michelle, joint caretakers to a woman who they have chosen to make a part of their extended family. I met Sal and Robin, a devoted father/daughter team who were reeling because their wife/mother had just been diagnosed with this hateful disease. There were a couple of other women present (I regret I can’t recall their names), and we took turns talking, airing our frustration with the illness, with ourselves, with our patients, and with families who don’t/won’t get involved.
I came away from that first meeting feeling a little . . . uplifted. Lighter. Enough so that I attended the next meeting, a surprisingly small affair that included Dawn, me, my mom (who had asked to go so she could talk about the disease from the viewpoint of someone who has it), and a woman whose husband had recently been diagnosed.
This month was my third meeting and now it’s like seeing old friends. Mary was there, and Robin, and we greet each other like sisters of the heart, hugs and kisses all around, and (if you can believe it) laughter. We warmly welcomed our newest member, whose husband had just been diagnosed. She was tight and withdrawn at the meeting, stiff and unwilling to speak until about half-way into our two hours when one of us (I can’t recall who) said, “Tell us your story.” We listened without interruption, offered support when necessary and advice when asked.
And, oh, did we laugh! Because, you know, laughter releases tension. It heals. It reminds you that you are still alive and part of the living world.
There are days when knowing I’ll only see them once a month makes the time crawl, but understanding they’re out there, really only a phone call away, makes the hours bearable. Looking forward to those hugs . . . and the hearty laughter of people who get it . . . smooths the uphill path and steadies my feet.
Will we always be friends? That’s impossible to say. It could be that we’re brought together just for this shared moment in time. It could be that we’ll remain bosom buddies forever. Either way, it’s okay. We have each other now, when we need each other most. And that’s a coin of unimaginable worth.