Posted by Mary Lang
Alzheimer’s disease has been in the news a lot recently. An article in the NY Times reported that a new definitive diagnostic tool will be available in the next couple of years. The NY Times also reported, as did WBUR, about Beatitudes, a nursing home in Arizona with an unconventional way of treating its residents with dementia – basically treating them as people with individual wants and needs – which has proved very successful. Even Ron Reagan’s new memoir of his father talks about the likelihood that President Reagan suffered from very early stage Alzheimer’s while he was still in office. Alzheimer’s can span decades of a person’s life, each stage bringing new challenges as well as new opportunities for meaningful relationships.
My mother lived with an Alzheimer’s diagnosis for ten years before she died, but it wasn’t until I was cleaning out her house after she moved that I realized she’d been covering it up for years before that. Under layers of papers and bedside reading in her bedroom, I found her handwritten notes, on her characteristic 5x7 mini yellow legal pad, from a phone call she had with me about the new pre-school that my children were attending. That conversation occurred in 1986 - at least five years before any of us were thinking about Alzheimer’s or memory loss, but even then my mother was taking notes on conversations with her daughters, because she couldn’t rely on her memory to remember what we’d talked about. Standing there in her bedroom, the pieces fell into place. Those years when she’d been increasingly anxious, increasingly disorganized, increasingly emotional were the early symptoms of her Alzheimer’s disease.
Here at JF&CS, we have been engaged in a year-long conversation about Alzheimer’s, about the latest research on how to manage the disease, about successful interventions and new models of care, and most recently, holding focus groups to explore the unmet needs for people with Alzheimer’s and their families and caregivers.
What we are learning is that, even though there are any number of resources for families beginning to deal with this disease, people still need help determining which resources can be helpful in their individual situations and when to bring them to bear, and also support in making decisions at various stages along the way. Only children with no siblings feel burdened with being the sole decision-maker for a parent, but families with many siblings, or blended families, on the other hand, often don’t agree about what is going on or who should be making decisions. Our geriatric care managers help both kinds of families, and all the variations in between. More than 55% of the clients of Your Elder Experts, our geriatric care management program, have some kind of dementia.
My journey with my mother through the various stages of this illness, as we met moment to moment, without past or future, is the reason I was drawn to working with elders. My sister and I were fortunate – we mostly agreed on what should be happening and how to care for our mother, but we still got advice from a care manager. For caregivers, it can be hard to know if you are doing the right thing, particularly when that right thing is a difficult decision. Feeling guided and reassured by a professional who has seen it all before, who can be part of the team without being part of the family, can be invaluable.
Mary Lang is an artist and photographer who does associate level care management. She has studied and taught Buddhist meditation for more than 30 years, and is the outreach coordinator for JF&CS Senior Services. Mary’s interest in working with elders arose from her experience with her own mother’s Alzheimer’s disease, and the recognition that good care can make all the difference in how someone ages.