The Cost and Unavailability of Dementia Care

Just as I was obsessing about how to pay for help to keep J safe and engaged, the New York Times published an article earlier this week about the high cost of dementia care.  It didn’t make me feel any better.

(See http://www.nytimes.com/2015/10/27/health/costs-for-dementia-care-far-exceeding-other-diseases-study-finds.html?smprod=nytcore-ipad&smid=nytcore-ipad-share.)

Also enraging is how few dementia care resources are out there. J goes to a great program at our local Alzheimer’s Association two times a week.  The person who used to run the program already tried to “transition” J out. At that time, J was beginning to lose some verbal skills, but she was still quite conversant, and enjoyed the program very much. I fought successfully to keep her in.  Now, some months later, there is talk again of “transitioning” J. To me,”transitioning” suggests going from one thing to something else. The Alzheimer’s Association, however, has no other program for her.

Nor have I found much in the way of other resources, despite diligently looking. J is only 64. We tried a senior center, but she couldn’t keep up with a non-impaired population. I looked at day care, but the people there were much less competent than J.  And it is certainly much too soon to think about a facility.

One solution is the companion who is starting with us next week.  I’m sure she will be terrific, but J very much enjoys being with other people who have Alzheimer’s disease, and that will end once she is no longer welcome at the Alzheimer’s Association program.

And we will find ways to cope, because that is what we do.

Get Up, Stand Up

I was riding the train last week and was not in my usual quiet car. The woman in the row in front of me was on her cell phone, talking loudly. Very loudly. 

My first reaction was annoyance. Here I was, wanting to read my morning paper in peace and this woman was simply rude.  I fantasized about tapping her on the shoulder and inquiring why she thought the entire car might want to listen to her conversation, quiet car or no quiet car. 

Then I started paying attention.  She obviously was talking with someone from her son’s camp or possibly a social service agency. Her son was having problems fitting in. He had been abused and suffered from ADHD.  The camp clearly wasn’t doing anything to make this child more comfortable. The mother, while noisy, was unfailingly polite and respectful, but firm and protective. If I had had a problem, I would have wanted her on my side. 

The conversation ended and we happened to leave the train at the same time. I almost let the moment pass, but I stopped her and said, “I’m sorry if I overheard your conversation, and I don’t mean to intrude, but I have to compliment you. You are a fierce advocate for your son and he is lucky to have you in his life.”  She got a huge smile on her face and told me that she and her husband were adopting the seven-year-old boy she had been championing.  She was dressed in a uniform and headed off to work. 

What had started out as an irritating encounter had morphed into what I hope was a validating experience for her and certainly was a learning moment for me. 

So how does this relate to me and J and Alzheimer’s disease?  This meeting made me reflect on my own advocacy on J’s behalf, and it gave me a model of patience, manners and formidability.  I am certain I will tap into this lesson the next time anyone tries to give J less than her due, which sadly is all too often.  

We aren’t always the best judge of what we need in any given moment. Sometimes when a loud voice blares forth, the best thing to do it to listen and learn.  

Tip of the keyboard to JH, who suggested this theme.