Assisted Living

Hundreds of time each year, this writer hears “But, I promised my parents that I would never put them in a home!” It’s considered the ultimate degradation–going into a nursing home. “I’m keeping her at home, I’ll just quit my job and take care of my mother.” With such dedication, it hurts when I have to explain that after years of personal sacrifice, a daughter’s super human efforts are the doing more harm than good to her parent.

An Example:
This writer was called in for an emergency evaluation with a man in his 80s, whose son and daughter-in-law had just installed him in a quarter million dollar addition to their home. Yet, he had become depressed–sitting and doing nothing, losing his appetite and seeming to withdraw into himself. He had been living in a “dump” or a tiny apartment in Falmouth on Cape Cod in a old and somewhat decrepit senior housing complex. Every day he would get dressed, cross the street and sit on a bench with a homeless person. They laughed, fed the pigeons and watch the boats come and go in the harbor. His son was horrified.

I arrived to their large rural home on a golf course, to find the patient sitting in the living room of a lovely apartment attached to his son’s house. There was a 50” TV on the wall, but he couldn’t operate the remote control to use it. The coffee table was piled high with National Geographic magazines, his favorite, but he seemed able to read the same page over-and-over when he picked one up. No one visited him and no called him. His son, daughter-in-law and two grandsons were busy working two jobs or going to school and activities. They made sure a lunch was in the refrigerator that he never ate. In fact, he was sitting on the couch staring out a likely $10,000 triple Pella sliding door at 18” of snow on the golf course, without even a bird or a leaf to look at. I quietly, went to the main part of the house and sat with his family at their kitchen table and told them how cruel they were to do this to him.

No, they didn’t take it well. Angry and upset they told me how much money they spent and all the work they went to. I told them their love and efforts were clear, it was just the wrong way to meet the patient’s needs because they relied on common sense. “My dad isn’t going to any home!” Well, if he had lost his legs to diabetes, gone blind or needed dialysis–staying at home would have made perfect sense. He could self-stimulate by watching the TV, calling his friends and inviting them over for conversation and meals he made or he could read books, do Soduko and engage in self-directed hobbies. Remember, like you do on a snow day forces you to stay at home from work?

In dementia, he need external stimulation. And, his son and daughter-in-law would have to be like cruise ship activity directors–you know the ones who keep your kids happy and busy with Snipe hunts, so you enjoy the cruise–offering 18 hours of daily socialization and activities to engage the patient. But, they work and have their own chores, and remember the cruise ship has several activities directors as there are two work shifts in a day. Bringing in companionship is fine if the patient can engage with them in a meaningful way, but with dementia you work your way up to full-time care, which is three shifts in a day and with holiday and sick time you need 4-5 people to cover those shifts. How would you do with three different people coming into and adjusting your kitchen every day?

Intuitively, one knows with a dementia person stability is important and introducing chaos with different care providers every several hours might be the worst thing you can do. And are any trained as activity directors? No. This examiner arrives to homes daily to find nice young ladies speaking to their boy friends on their cell phones, while the patient sits at a kitchen table with a sandwich in front of them. At $24/ hour (the average) X 24 hours in a day = $500/day or $15,000 per month and it is all NOT what a dementia patient needs or benefits from. But, they are in their home! Yes, but they are living there without dignity.

So What’s Better Than Being at Home?
A place with interesting activities, structured social events a person can just wander into and enjoy like a café. Many memory impaired assisted living facilities (ALFs) have a café where you can order coffee and pastry, sit at a table and chat about the weather with others and feel normal. No one asks you to pay, so no upset when you can’t make change or figure out the bill. As you walk around, there may be a movie playing where you can grab popcorn, or a dance hall, or how about hopping on a bus and taking a (simulated) trip around the neighborhood where you grew up, like the folks below are doing in an ALF in the Netherlands.

The typical ALF in the US is not quite up to the sophisticated standards in the Netherlands. Dr. Erik Scherder, a neuropsychologist there, focuses on elements that lower stress and discomfort (what we call “feeling normal”) reduces upset when people confront confusion in doing the tasks of everyday living. This writer is unpopular as a consultant in ALFs, as he advises things like a giant picture of a toilet affixed to a bathroom door when staff complain that male residents are peeing in the wastebasket or radiator, which reminds them of a toilet or urinal. Still, you can maintain decor and do common sense things. Take a look at the ALF of the future here, and look for activities, social settings, etc. that a person can simply come upon during their day walking about an ALF when you shop for one.

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