My book has been out for a month, and although I have sold several copies face-to-face, I am surprised by the number of people, friends and strangers alike, who have contacted me to say they bought my book and have read it through already.
I guess I should have expected this one outcome, but I didn’t: I am already being called by care partners who have read the book and wish to set up a consultation, because they like the approach, but need more help and guidance. Here’s an example:
“Carl” is 59 and has lived with a diagnosis of Alzheimer’s for 5 years. His wife “Mandy” has been caring for him at home, but is clearly getting worn out. They are now living on Medicaid, and although this provides about 7 hours of aide service per day, Mandy finds that she usually needs to be around to help the aides attend to his episodes of distress.
Carl’s doctor has tried the gamut of medications – each one either ineffective or toxic. Mandy has been doing an exemplary job of caring for Carl without psychotropic medication, but the strain is showing. She fears moving him to a nursing home because she feels that, given his distress, sedation will be inevitable. When confronted with the burden she has taken on by being a lone care partner, her response is that to move him to a home would shift the health risks back to him, due to over-medication, and she is still willing to put her own health on the line to prevent that.
Carl and Mandy’s story is replicated well over a million times around the country. There are many reasons why I cannot take on a consultative role these days, not the least of which is that Medicare does not recognize geriatricians as consultants in dementia – only neurologists and psychiatrists.
Currently, I am working on a curriculum for nursing home staff to help teach the ideas in the book, but the greater need in the community is huge. How best to provide added value from the “experiential” approach to these folks with limited time and resources? Any thoughts?