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” as his son called it – 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 and hang out 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, for which he couldn’t operate the remote control. The coffee table was piled high with National Geographic magazines, his favorite, but he only 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 rarely ate. In fact, when I came 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. They were already upset about how ungrateful the patient was as he didn’t seem to appreciate their efforts. With me, they became furious. Didn’t I know 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, how much you loved a snow day, because you were stuck at home and get so much done? Looking forward to retirement only makes sense if you can fill the time no longer spent at work with something productive and interesting. But, when you have dementia you can’t self direct and organize new activities. You can’t remember what TV show you want to watch, or when its on, even if you can still operate the remote control

In dementia, this patient needed external stimulation. And, his son and daughter-in-law would have to be like cruise ship activity directors–you know the people who keep your kids happy and busy with Snipe hunts, so you can enjoy the cruise. Cruise ship activity directors design 18 hours of daily socialization and activities to engage people in fun, meaningful activities. But, the cruise ship employs these people and they hire several activities directors who work in separate shifts in a day. A dementia patient needs this sort of activity and social directions 24/7 which is beyond even what a professional can do in the ship’s stimulating environment. So how do you do this, while working a job and raising a family at the same time? Well you can’t. BTW, it would take different people each day (an 8-hour shift each) to accomplish this and with time off, sick days, etc. you’d need to organize and hire four or five people. And when you’re done, the patient would be overwhelmed. Think about it, how would you do with three different people coming into and re-adjusting your kitchen every day?

Intuitively, everyone 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 patients’ 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 (which nearly all families want) but they are living at home without dignity.

So What’s Better Than Being at Home?
Am assisted living facility, or ALF, is a place with interesting activities, structured social events a person can just wander into and enjoy. And, yes all ALFs have activity directors to do what family can’t. There are staff to cue, cajole and get folks to leave their rooms and engage in activities. Many memory impaired 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 there is no upset when you can’t make change or figure out a bill for food or what to tip. As you walk around, there may be a movie playing where you can grab popcorn, or a musician playing golden oldies, or how about hopping on a bus and taking a (simulated) trip around the neighborhood where you grew up, like these folks below are doing in an ALF in the Netherlands.

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