Too often people are constrained by what they are told they can’t do rather than encouraged to do what they can.
I learned so much with respect to abilities and labels during my Alzheimer’s story with Mom. I wanted to help her engage life as much as she could for as long as she could; that was my goal. Yes, her abilities declined as the disease progressed, but there were always things she could do. Always. That’s why I never stopped trying new things or re-trying things I had tried before to keep her as active and as healthy as possible despite the degeneration caused by the disease.
On September 6, 2014, two years before she died, I experimented with a basket of pompoms of different colours and sizes. Mom started playing with the pompoms as soon as I put the basket on her lap. She picked them up, rolled them around in her hands, held them up to show me.
“This is a yellow one,” she said of the pink one pinched between her thumb and index finger.
“Yeah, it’s bright,” I replied
“It’s bright,” she echoed. Repeating what was said around her had become Mom’s way of making conversation and staying connected with people. She may or may not have understood everything that was being said, but she wanted to participate damn it! That was her character. She drew on decades as a successful real estate agent for her “social chit chat” skills. She had a hard time completing sentences from early 2014 onward, but she still had moments of astonishing clarity and a strong will to express herself.
Here’s a snippet of what happened with the pompoms:
I rarely mourned the loss of the Mom I knew: a competent, funny, fiery, fiercely independent business woman who was always on the go. Sometimes during our journey, I prayed that she would both go and stay. Her condition was sometimes heartbreaking to witness, but I didn’t shed more than the occasional tear over the things she couldn’t do — I focused my energy on the many things she still could do.
Mom may have be confused, but my mission was clear to me. I wanted to help her engage with life and with others for as long as possible. We did simple things together: stood up, sat down, walked a little way, counted to three or four or five or 10 on a good day; we sang, clapped our hands, made up silly rhymes, “cooked,” had tea with friends, went for a drive, picked out the yellow and green pompoms from the basket on her lap. We listened to music, we made music, I painted her nails.
Sometimes we talked about dying. Or about love. Living with Alzheimer’s wasn’t a bowl of cherries for either of us. Just like it’s not for millions of others around the world who live with dementia of the Alzheimer’s type and other dementias right now. We could have moaned, whinged and complained about our sad lot. We could have given up. But that wasn’t in Mom’s nature, nor is it in mine. What good would giving up do? Better to keep going. When happiness fails to knock at your door, better create your own joy.
A basket of pompoms is as good a place to start as any.