I walk through my mother’s place – five minutes from my house – where I go each day to care for her. She can no longer cope with or carry out everyday tasks, such as making meals, bathing, dressing herself or keeping house. As I move slowly from room to room, I take in all the large and small reminders that offer testament to the person she used to be. That is, I see the paintings she created, the Victorian dollhouse she made and furnished, as well as the many books she collected over the years (and “catalogued,” for she was, until retirement, a U of M librarian). Standing on her deck, I notice the plants she lovingly brought from her house when she moved to her condo…prized iris, lilies now pathetically choked off by weeds. The master gardener in her would be horrified if she understood this travesty, and I never quite succeed in taming the vegetation.
In fact, I sense I’m forever losing the battle to maintain things as she had them, and I feel guilty because I can’t preserve either her or the space that represents her. It often feels to me as if she has died, that the person she once was has gone forever, and as she lies on the couch in her den – the television tuned to a program she can no longer understand – I live with a sort of rolling grief, performing for her the only simple services left to me, short of those we carry out after someone’s death. For my mother is suffering from dementia and its handmaiden, Alzheimer’s, a disease that takes away the person before the life…so that the creative, intelligent and talented person she used to be has vanished, only to be replaced by someone who still looks like her but whom I hardly seem to know.
My mother’s descent into the stark and relentless realms of dementia proved subtle at the onset…a circumstance more common than expected. According to a paper titled “The Seven Stages of Dementia” issued by a home health care company called Professional Nursing Services, Inc., in stages one and two, an individual might exhibit no cognitive impairment or a very mild level of cognitive decline with attendant memory lapses that we all live with as we age and that no health care professional would detect. But stages three, four and five show mild, moderate and moderately severe cognitive decline, respectively. It was somewhere in the midst of these three stages that I became concerned by my mother’s behavior and consulted a doctor. At first, she could grocery shop, clean house, garden a bit and tend to her personal needs, but her memory difficulties increased exponentially as time passed. Slowly, I had to assume more and more of her life functions, making some of her meals, paying her bills and helping her dress. She became fearful and suspicious of people, objecting to a cleaning service coming to do thorough housecleaning, and an aide I hired to help with her care twice a week. She is now entering stage six, which is characterized by severe cognitive decline, and she no longer knows my name or what my relationship is to her…other than caregiver.
Her decline has reached the point where more professional care is necessary – either in-home or in a facility before she reaches the seventh and final stage of this ravaging disease, that of very severe cognitive decline. I can no longer care for her on my own. Before she loses the ability to walk or sit up, to speak or to respond and, in fact, to even swallow, I must find a memory care facility, find a nursing home or, as I am doing now, get home care for her, offered by Medicare but time limited. She’s had a small stroke and an MRI to confirm it, so she can get some physical or occupational therapy, help with her personal needs care and perhaps even some nursing, if required. But this is a stopgap measure to making a change that will protect her until the end. Either she needs in-home care around the clock, or she must move to a place where the care of patients is appropriate for the disease she has or she can come and live with me. What is the best solution?
I sit with my mother after having finished her care today – bathing, dressing her in clean clothes, washing her hair and brushing her teeth. She has eaten a good meal and seems content…especially after we finish things off with some ice cream. Often she is hostile to me because I am the dictatorial one who insists on doing chores she dislikes, and she protests days like today. But still, she’s happier after she is all cleaned up.
I tell her I need to get home to fix dinner at my house, and she frowns at me, attempting to understand. I gaze into her still blue eyes, pondering the distant, sometimes vacant look they have acquired as we try to make sense of each other’s mysterious realm. When I kiss her goodbye, as I do each day, she makes no response at first, staring at me, searching for an answer there, some explanation of the strange mental and emotional landscape in which she dwells. As I rise to leave, she reaches out to touch my cheek, and for “one brief, shining moment,” she is my mother again. I smile in appreciation and hold her hand as I sense the presence, albeit however briefly, of the first person I ever loved…and I know that what I do for her, no matter how difficult or how much it may get me down, is the right thing to do.