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Downsizing with Dementia

March 29, 2013
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Photo by Shawn Henning, via flickr.

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
http://www.alz.org

The Alzheimer’s disease Education and Referral Center (from the National Institute on Aging)
http://www.nia.nih.gov/alzheimers

Healthinaging.org
http://www.healthinaging.org/home-and-community

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5 comments

  1. A common eldercare situation: dementia causes your aging parent to move to assisted living. Upon the move, he or she is more confused than ever. What’s up? Assisted living offers just what the doctor ordered: structure, supportive staff, meals and personal care. But for awhile, things are topsy-turvey. Why the increased confusion? Throughout his or her life, your aging parent successfully navigated through change. He or she adapted to new stressful situations, be it college, a first apartment, or a new workplace. During the first few days, things were forgotten–the umbrella, briefcase, or coffee mug. But soon, the short-term memory clicked in, relaying the information about the new surroundings to the long-term memory. Your parent’s transition to assisted living is drastically different. Now, with dementia, the short-term memory is diminished. Before moving to assisted living, your parent kept things barely afloat by relying on the long-term memory. He or she knew the location of the living room and the kitchen and how to find the bathroom from the bedroom at night. In assisted living, his or her new home, everything is upside down. Where’s the dining room? How is the laundry done? Confusion, confusion at every turn. How do you, your parent, and the staff handle this successfully? Assisted living staff in Washington State, and throughout the country, are required to take specialized training in dementia. They know that a new resident will need extra time and attention, which may include reminders about wake-up time, escorts to meals, invitations to activities, etc. You can help, too, by setting up the room ahead of time with special furnishings and belongings. During the first few weeks, make an effort to eat some meals with your parent in the dining room. The good thing is that generally, the confusion will improve after a few weeks. The new home will seem more like home, and your parent will seem more like himself or herself.

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  2. Beautifully written. Bless you and your family.

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  3. My mother, age 91, is in an Alzheimer’s care facility. She’s fallen and broken bones twice this year. Obviously if we could afford to have additional nursing care we would, but the facility itself (private pay) is over $7000/month. However, at this point she has gone through all her money and her pension and social security places her income too high for Medicaid. She’s frail, blind, cannot communicate and needs a much higher level of care. I’m nearing retirement and wonder, after I spend my money paying for her care, who will pay for mine?

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  4. Dear Amy
    I want to thank you for your candor and heartfelt comments. It is a world of continual transitions for you and your family. And the joys and pains are in moment to moment beats. If indeed your grandmother is strong physically then indeed there are years of life yet.
    I have worked in nursing over 35 years. Its been ‘rich’ and intense– HIV crisis in SF, psychiatric impaired, cancer patients young and old and now as a geriatric care manager with very frail elders and their family. I was wondering where in your family’s caregiving is the person who see’s it as their journey? Often my experience has been that when a family can identify a person in the family who makes the care of the impaired person a hero’s journey with deep spiritual meaning, then there is peace for most all concerned. My experience is that institutions never get it right. And the continuum of care isn’t really there unless you are a person of considerable financial means. It comes back to answering the question of “how am I a good enough” daughter, son or granddaughter and living that out. Its not particular to persons with Alzheimer’s the same themes are there with families with a person with schizophrenia, a child with severe disabilities , a mother with recurrent cancer.
    For instance what would it look like to hire an OT with certification for ‘aging in place’ to examine one of your homes for adaptability, to work with a nurse specialist to cost out a long term plan or with an elder law financial advisor.
    Just some thoughts and bless you again for your candor It was very helpful.
    Donna Ebersold

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  5. My mother (91) with dementia and almost no ability to communicate, is in an Alzheimer’s facility and has fallen twice in this last year resulting in broken bones. Yes, it would certainly help if we could hire a nurse to watch her but at nearly $7000 a month private pay, we just can’t. Her money is nearly gone but she has just enough income to prevent her from receiving Medicaid. We’re frantic. It’s a nightmare situation that so many are facing. I’m ready to retire and wonder who will pay for me after I spend my money paying for her?

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