Downsizing with DementiaMarch 29, 2013
By Amy M. Collins, editor
I’ve blogged before about my grandmother and her dementia, which has long since been staking a claim on her memory. A few years ago I wrote a post called “No Country for Old Women.” In it I tried to describe the feeling of helplessness that my family felt when a series of providers had failed to diagnose the cause of sudden delirium superimposed on dementia . . . a frustrating game of hot potato had ensued, with each physician passing her around to the next. It ended when a nurse finally diagnosed her with an impaction.
A similar sinking feeling strikes me as her dementia advances, and again, there seems to be no place for her to go. At her independent living center, we know she’s just barely scraping by. If it weren’t for the nurse we hired to keep an eye on her each day, her difficulty living there would be much more obvious.
Our nurse faithfully calls to let us know when my grandmother has forgotten to shower; when she’s been seen in the same clothes a few days running; when she won’t stop cleaning the break room, the distant memory of her long-standing career as a housewife stubbornly clinging to her; when she’s been found wandering the corridors at night. I think we’ve kept her there so long because everyone there loves her, she’s allowed to have a cat (the one thing she can remember), and for the family caregiver—my mother—the difficult decision of uprooting her and moving her again is an agonizing one.
But the independent living facility can only watch her so closely; these centers aren’t equipped to handle all of her health care needs. Their solution is to hire more outside nurse power, but that adds a lot of money to an already expensive situation. Now we are looking to move her to an assisted living home that has four “levels” of intensity of care—or as my mom joked, the four rings of hell—from just the occasional reminder to shower to full-fledged diaper patrol. A social worker at this new facility assessed my grandmother yesterday, and she didn’t necessarily pass with flying colors.
“Are you a widow?” the social worker asked.
“No,” my grandmother replied, despite the fact that my grandfather died 10 years ago. “I mean . . . I don’t see my husband all that often, but he’s not dead.” Subsequent questions got similar answers, her short-term memory loss painfully apparent. This isn’t to say she doesn’t still have a sharpness to her—when asked what year it is, she replied, “well, what year was last year?” When she was told that last year was 2012, she smiled and said “well then it’s 2013.”
The social worker said she was at “level 2” and wasn’t sure if the facility was equipped to deal with this kind of memory loss. Well, then, who pray tell is? Who else goes to live in assisted living, where many residents must be reminded to shower and eat, if not those who suffer memory loss? Perhaps there are places that solely deal with patients with dementia, but my grandmother is still social, physically fit, and active. The hard thing is to balance her particular health care needs with a place that still seems like a home, not a jail or some sad, dreary version of limbo.
If she does get the green light to live in this new center, she will need to have a roommate in order for Medicaid to contribute to the enormous cost of paying for assisted living. It was sad enough when she went from a house—with her many belongings and the beautiful paintings she executed before the disease took her artistic capabilities away too—to a small room with a faux stove and hospital-style bathroom. Now she must go from that to sharing a room with a complete stranger. She’s not allowed to bring her cat. As her dementia grows, she must downsize. It’s sad to think of what the next “level” will bring. The cruelty of dementia is that it only leaves you with the here and now, the right this second. It doesn’t only take away your memory, your dignity, your family and loved ones, who you stop remembering and can’t recognize. As in this case, it also takes away your sense of home.
Some resources for caregivers of people with Alzheimer’s disease and dementia can be found here:
The Alzheimer’s Association
The Alzheimer’s disease Education and Referral Center (from the National Institute on Aging)