Understandably, someone receiving an Alzheimer's diagnosis will fear not just its outcome, but also its impact - particularly being marginalized, almost made invisible.
Even within a family, how others approach the person with Alzheimer's can be night & day different. Two children, one who believes in placing independence over cocooning their loved one in stimulus-numbing "safety;" the other who's ready to sign in dear old Mom to a top-notch "memory care" unit. Both can tend to "talk over" their parent, as if he or she has lost the ability to think for themselves. Too many nose-dive into independent research, without the perspective to sift it dispassionately, interpret through a lens already colored with expectations.
I'm blessed to work with someone freshly diagnosed who is open about her condition, who shares what is happening, including her frustrations at not knowing how to do something, a task she handled without thinking just six weeks ago. She has the fears - of being marginalized by society & even her family, of what lays ahead - but she faces them head on. She wants to share what's happening, at least what's happening to her. And she has her family's support. Her kids don't agree on everything, but they know everything the others think are best practices. And they talk.
I think about a client's family who were considering placing him in a higher level of care, which would have meant moving from his familiar apartment into a more restricted area. The kids & staff arranged a conference call at his senior community, a call ably facilitated by one of the facility's senior health care professionals. All the local children were there, the others called in from around the country, I was there - and so was their father. He heard everything, was included in the discussion & gave his assessment of the situation ("There will come a time when I need the advanced care & I'm not there yet.").
Since I have no training in Alzheimer's care, I am not about to dole out advice on how to avoid the marginalization that so many with various forms of dementia - or any form of dependency - suffer. But it doesn't take a specialist to realize the importance of figuring out ways to handle it, with expert help.
My own experience with older folks being marginalized started with Mom. Back when she was "a kid of 70," a sister-in-law read me the riot act because I wasn't making Mom's decisions for her. "She's too old to make those decisions on her own," she lectured me. Seriously? Well, that sister-in-law is now nearing her own 70s. Am wondering if her view has changed, now that she's getting up there in years.
There are no easy answers, but at least it helps to understand the question.
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