Tag Archives: caregivers

Don’t Let Dementia Steal Mother’s Day

Don’t let dementia steal Mother’s Day from your family. That #mother-child bond is sacred, no matter what’s happened in the years since your birth. For the past 11 years, I’ve had to remind myself of this on every #Mother’s Day. Though not fully present, my Mom is still here and I’m grateful for the life she gave me.

Dementia Steal Mother's Day

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.
by Lao Tzu

She was always tiny and cute in her whirling skirts and pixie hair cuts. My mom was a good cook but a better dancer. Although she made a mean roast beef, she was happier doing the jitter bug. My parents didn’t always get along, but they found harmony swinging through space on any dance floor. Tall, handsome dad turning pretty little mom on the fulcrum of her high-heeled shoes. Sparkly earrings on a Saturday night with the Dorsey Brothers, Sam Cooke, Doris Day, or Motown. She could dance to it all.

My mother had a lot of rules and her two daughters tried to follow them. A strange authority emanated from her small body. When we made her mad, she cried as she scolded us. The sight of her tears was far worse punishment than an afternoon stuck in our rooms.

Her greatest teachings focused on work ethic. Though she delivered forty weekly hours of effort to her boss, Mom still came home eager to tame an unruly household. Laundry, housecleaning, financial management — she excelled at all of it. Her performance standards were high. My sister and I absorbed that.

Can #Dementia Steal Mother’s day?

I feel that Mom’s efficiency must have cost her something. At what point does #dementia sneak in? How does it find you? Why does it pursue you so slowly, so relentlessly? The disease raises a hundred unanswerable questions. But it’s taught me at least one thing: While dementia may erase their memories, it has no claim on yours. As long as a mother is alive — and well after she’s left this earthly plane — you can commit yourself to cherishing the things you value about them. You can remember who they were and what they did to plant you in this world of boundless possibility.

I have to finish here and cry a while before I go to observe Mother’s Day with my mom. She’s tinier than ever, folded like a paper doll into a giant, deluxe wheelchair. Now I call her my Origami Mommy. She’s cute as ever, nearly silent, yet somehow still aware of the charm she exerts in this world. God bless her and all the mothers silenced by dementia and other grave illnesses. May we all draw solace from the gifts they gave us so long ago.

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.