Supplements

 

Commentary

By Liz Quirin

Taking a Journey of Hope

I began noticing a difference in mother’s conversation when she would ask about her grandchildren. “How are your children?” she asked instead of using their names. It was subtle. She knew about them but couldn’t recall their names. Eventually, she would no longer know my name, except occasionally. It became a game of hopeful anticipation: I asked her if she knew my name, and most of the time she did not. On those rare occasions when she called my name, I celebrated. For one brief moment, we connected.

Today, so many adult children are struggling with these terrible, brief bursts of joy and the interminable voids that follow. Some of them have begun preparing for the future — visiting nursing homes, attending Alzheimer’s support groups, reading books, talking to friends — and looking for hope. Reading, visiting, attending and talking give folks some action to take, a way to control a situation that is veering wildly out of control. Over time, I learned that I couldn’t control the situation, the downward spiral or the eventual end of the time I had with my mother.

I had to find a way to live every day with hope, maybe that she would recognize me and call my name, perhaps she would express an interest in taking a walk, and later that she took more than one bite of food. The circles of my hope grew smaller, even as her time grew shorter here with me.

Elusive at times, hope grew and changed. The final hope in my case began to emerge as a hope for peace, hers and mine, a peace that would free her from the burdens of this world. That hope didn’t come easily or quickly, but God gave us the time to adjust, to learn to hope for the grace to persevere and to accept whatever each day brought as it unfolded.

For people who live with Alzheimer’s — whether it is the sufferer or the family — the grieving process often begins long before a loved one dies. Our parent or spouse or friend disappears — sometimes gradually, sometimes quickly — even as we try to hold onto them. Our hopes and expectations begin to change. Instead of a lively conversation, we hope for a few sentences, a bit of understanding. It’s not that we are ungrateful for the person we have, but we miss that person we knew with the sparkling personality, the ready smile, the quick wit, the ability to “fix” anything.

This disease that robs us of our most precious people can’t be “fixed,” but many people can find hope through support groups and information. It’s always better to have some idea of what might happen, of what the next step might be. This journey that we wouldn’t wish on anyone, and really don’t want to take, can teach us so much about life, ourselves, patience, kindness, love and especially hope.