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Cheryl Hughes: It Takes A Village

My stepmom has Dementia.  She is 92 years old and doesn’t know who she is—she calls my stepsister, Lorrie, by her own name, Roberta—and she thinks I’m her granddaughter.  She lives with Lorrie and her husband, in a mother-in-law apartment, which adjoins their house.  My other siblings and I believe she would be better off in an assisted living facility.  My stepmom has enough money for that, but Lorrie doesn’t agree.  Instead, my stepmom has 24-7 live-in caregivers in her apartment.  I feel bad for my stepmom, because she is confined to 4 rooms with no windows to look out of.  The door has an automatic lock, so she can’t go outside.  She paces from one room to the next.  The caregivers often call on Lorrie for help.  My stepmom screams at them and hits them with her cane.  Lorrie is under a lot of stress, and I feel bad for her too.  I’ve told my children if I have Dementia, I want them to put me in assisted care or a nursing home, because I won’t know who they are anyway, and I don’t want them to remember me like that.

There is a move in other countries, led by innovations in the Netherlands, to create Dementia villages.  Hogeweyk, in the Netherlands, is a neighborhood that is part of the bigger society of Weesp.  There are a number of houses where people live together as roommates, based on similar lifestyles and degrees of mental capacity.  There is a pub, a restaurant, a theater and supermarket.  Each building is staffed with Dementia-trained caregivers and health professionals.  The difference is these professionals aren’t dressed in scrubs.  Instead, they wear clothes that match the job.  A restaurant worker will wear an apron, an employee at the garden center might wear overalls, all in an effort to make the village feel like a community.  The mission statement on the website says, “We strongly believe in deinstitutionalization of care and the need to emancipate people living with Dementia and include them in society” (hogeweyk.dementiavillage.com).

For you or me as noncitizens, it would cost $8,000 per month to live in this Dementia village.  For the citizens of the Netherlands, the government would subsidize the care.  It would be nice if the idea of Dementia villages would catch on here.  There is one on the horizon in Holmdel, New Jersey.  The village will have 15 homes and will include a “town center with grocery store, bistro and community center.  It will house 105 residents (nytimes.com).  The cost of living in one of these villages in the US would fall to private individuals, however.  Most health insurance in this country doesn’t cover assisted living, and Medicare doesn’t fully cover care in an assisted living facility, so it stands to reason that it would probably be the same with a Dementia village.

It is estimated that by 2060, 14 million people in the US will be living with Alzheimer's.  Construction costs and staffing issues are blamed for how few facilities, like the one in the Netherlands, exist (research.colostate.edu).  Till we get there.  Till we have a cure for Alzheimer's.  Till we have subsidized health care—no, I’m not a socialist, I just wish more of my tax dollars went to help my hard-working friends to have better health care.  Till all of that happens, we will do like we’ve always done.  We will find ways to make life better for those around us who can no longer remember who we are.  My brothers and I still visit my stepmom at Lorrie’s house in East Kentucky.  My sister-in-law cooks her favorite foods.  My stepmom has gotten frail, so we took her a lift chair for Mother’s Day.  She doesn’t know who we are, but that’s not the point.  We know who she was, and we will continue to honor her for that.  

 
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