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.

Dementia and Big Transitions

My mother is now so frail we cannot care for her safely at home. A male aide can lift her. But even with two women (one aide plus me), it’s dangerous to maneuver her because she can’t stand at all. Dementia and big transitions seem to go hand in hand.dementia and big transitions

The choice to move her has been very difficult. I had a vision of the future and how our family would respond to it. I always hoped that my mother would stay home with us until her final exhale. But #dementia is full of surprises. As the disease evolves, each new phase forces you to make hard decisions.

Over the past three years, we adapted this house to accommodate Mom’s medical equipment and special needs. It began with a ramp and ended with two wheelchairs, a shower bench, and an electric bed. We have all manner of sweaters, gloves and blankets to help keep her warm — a big challenge in winter!  At this point, there’s almost no room to walk around. I can’t imagine dragging a Hoyer lift through the house to transfer her. The relevant doorways are too narrow to move a lift in and out. Mom only weighs about 90 pounds, but lifting her is like moving a drenched carpet full of wet sand.

Home Care, Home Hospice, What Next?

It’s very hard to find a placement you trust when someone is as fragile as my mom. She’s been on home hospice for several months, so we turned to the hospice social worker for suggestions. My sister and I visited several places and looked at a dozen others online. We finally selected a facility that has a great reputation, both locally and nationally. It was heartbreaking to see her confusion during the first days. People with dementia become disoriented quickly if you change their surroundings. I know my mother was wondering why her loyal aides were not around. She couldn’t speak but I know my absence worried her, too.

I have been visiting her often to make sure that the staff knows we’re watching everything they do. My current mission is to make sure that anyone who has contact with her understands Mom’s needs. I don’t mean the obvious ones or the items in the care plan. They have to grasp her subtle needs, too. Dementia and big transitions conspire to make holidays a lot less cheerful. But we’ll all find our way through this challenge. We’ve learned to live with everything else and — like it or not — we’ll adapt once more.