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.
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.