Her 67th anniversary, Nov 2013
One year ago today, we moved my mother from the assisted living apartment she shared with my father to a locked special care unit for dementia patients, in a different wing of their retirement community. She was 96 years old, and had Lewy body dementia. The hospice team evaluated her and said she was eligible for care; she might well not last six months.

Here we are, though, one year later. Hospice care ran out in July. She’s outlived most of those who were there a year ago, and several who came later. The sad lady who cried and kept saying she wanted to go home. The man who thought he was home, back 80 years ago, in a small town on the other coast. The beautiful, frail, devout woman who prayed the rosary again and again.  They’ve gone on, home or somewhere beyond, or nowhere at all. But my mother lingers, in special care. Maybe you know that place? It’s over the little orange fence.

There are 14 beds, but only 12 patients right now. Usually two Certified Nurse Assistants are present to take care of them, and one or two others come to help serve meals. It’s hard work with so many flavors of dementia – not just Alzheimer’s – and the other physical ailments of older people. The staff are kind, patient, and very busy. They deserve every dollar of their not-that-high salaries, and our respect and gratitude.

I go every day after work, feed my mother dinner, change her, brush her teeth, and settle her in a big chair in the living room with her friends to doze through another movie. So I know all the staff and patients, and they all know me. After a year, I know the routines and help out if they are shorthanded; just don’t tell the higher administration, as they wouldn’t approve. Upper management rarely shows up though; mostly it’s just us chickens.

Lewy body dementia, my mother’s presumed diagnosis, is an odd disease. It’s generally progressive, and often more rapid than Alzheimer’s, but with a lot of variability from person to person, day to day and hour to hour within the same person. As one of my friends says, “Some days chicken, some days feathers.” My mother’s memory is relatively spared so she knows all of us and knows my dad and I both come every day. Her executive function, though, is toast. The effort to form sentences is so great that she rarely speaks. When she does, she’s coherent, sometimes trenchantly observant, always sweet. She is grateful to the staff and to me for our help. Eating now takes deep concentration; she loses a few pounds each month. It’s hard for her to transfer from chair to wheelchair to toilet or bed, and sometimes painful, but she manages, because we ask her. She sleeps a great deal.

She’s the oldest person in special care, and in some ways, the most advanced in her dementia. Will she be the next to say goodbye? One thing I’ve learned there is that you just can’t tell. The hospice people couldn’t guess, and neither can I.

My mother always said she would not want to live into old age with dementia. “Just put a pillow over my face!” she used to say. Now she is wistfully patient with life in special care. Sometimes she is anxious, and I recite the 23rd Psalm. Or rather, I recite the first couple of verses, and she says the rest. She still knows them by heart. Her father was a Baptist minister, and she went to Sunday School, and this comforts her.

A year of special care has taught me patience, and given me lessons in compassion. I don’t have a graduation date set for these lessons, though, and I don’t exactly want a date. Here’s what I do want, I think. (As always, a poet has said it best.)

In the Nursing Home
Jane Kenyon (from New and Collected Poems, Graywolf, 1996)

She is like a horse grazing
a hill pasture that someone makes
smaller by coming every night
to pull the fences in and in.

She has stopped running wide loops,
stopped even the tight circles.
She drops her head to feed; grass
is dust, and the creekbed’s dry.

Master, come with your light
halter. Come and bring her in.

EDIT to add: Thank you for community and rec list - this experience touches, or has touched or will touch, so many of us. Kenyon's perfect image and words capture how we ache for those we love.  

Originally posted to Laurel in CA on Thu Jan 16, 2014 at 08:27 AM PST.

Also republished by CareGiving Kos and Community Spotlight.

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