Tag Archives: end stage dementia

Bearing Witness as a Caregiver

Bearing witness as a caregiver can be painful. As the new year begins, and my role in Mom’s care continues to shift, I’m paying careful attention to changes in her condition. Unfortunately, most changes are signs of decline. When I was the primary caregiver, I had too many responsibilities and no time to think. Though I have more time for reflection now, my thoughts are steeped in sadness.

Bearing Witness as a Caregiver

My mother’s shift to full-time, skilled nursing care coincided with the end of the year. During most years, I use these dark winter months to consider where life has brought me and decide where I want to end up next December. Usually I go to a book store and leaf through a dozen magazines in search of inspiration. Then I buy a few and cut out pictures to make a vision board. Last year’s board is sitting upstairs with the pictures falling off. I never really completed it because I was always too busy. Even though I have more time now, I’m not as motivated to do a board for 2018. Grief is catching up with me.

When you’re a day-to-day #caregiver, your tears have no path to the surface. You can’t cry while lifting a sick person. You can’t weep while feeding them. Maybe you can sniffle in the grocery store, but your face better be dry before you walk into the cold night air. I can cry in the car at times, but that never lasts long. Grief gets interrupted when someone cuts you off on the highway.

A dozen professionals now deliver my mother’s care. With more moments for reflection, I notice that her ten year fight with #dementia is like a filmed auto accident stretched out by special effects to last a decade. Unlike a movie on DVD, you can’t hit the stop button to avoid watching the accident. And it’s impossible to push fast forward to eliminate years of suspense. Dementia just plods along, stealing things you love until it finally takes possession of everything.

Bearing Witness as a Caregiver

Though we may be tempted to turn away, bearing witness might be our most important act at the end of the disease. Even if someone else takes on the daily toil of cleaning and feeding our loved ones, we remain powerful advocates because we know them so well. The most informed doctor can’t decipher what a double blink means once speech disappears. A nurse can’t know when grinding teeth signify, “Blankets, please!”

It’s difficult to accept Mom’s decline and know I can’t do anything to stop it. But I want — no, I need — to be brave and watch with care. Time can move fast or slow, but it’s always passing and I can’t afford to miss a thing in 2018.