Restoring home for a mother needing care
My mother and I have just celebrated an anniversary. Four years ago, when I returned from abroad, I took her out of the nursing home in which she had been living and brought her back home, to care for her here.
The decision to leave Mom in the care of professionals or take on that responsibility myself was not taken lightly. Many - from social workers to friends and even relatives - were skeptical, some hostile. It will be impossible, they intoned, for you to give her the same quality of care she got "in there." It will be too much work, they said. Her condition will deteriorate, I was told.
The naysayers' warnings did register, but I understood my mother's best interests another way. Some older people adjust to nursing-home life; but my mother, after 16 months, never had. She came out of her room for meals and went right back in. She didn't want to socialize with the other residents. And she greatly resented the constant flow of strangers who came and went all day long to check on her, to give her medication, to clean.
Mom had a house big enough to accommodate us comfortably. And she desperately wanted to get back into it. Despite dementia, during those 16 months in the nursing home she rarely forgot that she wasn't at home.
Sometimes she would take the pictures off the walls of her room, other times she would empty the contents of the wardrobe and dresser onto the bed in one grand heap that said: Get me out of here.
So, with the doctor's permission, I took my mother home. She adjusted more quickly than I. Being her live-in caregiver has required patience, attention to detail, and the most precious commodity of all, time.
From the moment she wakes up until she's back in bed at night, there are few details in Mom's life in which I am not involved. This has meant sacrificing my ability to move spontaneously - from driving across town to take in a movie, to flying across the country to visit a friend. Mom's presence in my life means that I must plan my absences carefully.
But this is no solo endeavor. I have help. A family friend stays with Mom while I'm at work or traveling; a respite-care agency sends someone to cover the occasional evening out. Working in concert, this team of caregivers - of which I'm captain - has enabled my mother to hold on to the greatest comfort she has.
And I've become proficient at the routine. Attending to Mom's personal care each day. Cutting her hair and balancing her checkbook each month. Doing her taxes each year.
In the four years that my mother has been home, her mental health has improved. She moves from one day to the next without anxiety. I often ask her if she is satisfied with this, her private nursing home. She always says yes.
Still, I question myself: Do I leave her to herself too much? Should I be preparing more elaborate meals for her? Should I take her out more frequently? Can I do more to help her to distinguish one day from the next? Would the professionals do a better job?
But the professionals can't give Mom the kind of privacy and dignity that she enjoys in her own home. And it's clear that there are many like us, who have chosen this route. The Alzheimer's Association estimates there are 4 million Americans with the disease, and more than 70 percent live at home.
For now, though, we take it one day at a time. Every day that Mom lives at home is a small victory.
And we have another anniversary coming up. Next month will mark 30 years that my mother - except for that brief but unhappy 16-month break - will have lived in this house. Her home.
* Marda Dunsky is an assistant professor at the Medill School of Journalism at Northwestern University in Evanston, Ill.