Telling My Sister Lois

Martha’s Vineyard

Lois picked me up at the bus station yesterday evening and we drove directly down here to Martha’s Vineyard.  On the way down, not knowing about the diagnosis, she asked what I was doing these days; the answer, of course, was that I was coping with this diagnosis.  It seemed a good lead-in to the weekend, so I told her.  She was silent for a while as we drove the highway and then, “Jesus, David.”  A little later, “I am so sorry.”  There were some tears.  Shortly thereafter, she said, “I knew you had some bad news if you were coming up here just to ‘visit.’”

Lois hadn’t missed anything a month or so ago when I’d called up to invite myself for a visit.  When she returned my call, Marja picked up the phone and, in the course of the conversation, told Lois that I was concerned about some “cognitive issues.”  That was “back in the day” (six weeks ago) when we had decided to break the children in gently by mentioning concerns but not going so far as to name the diagnosis.  It was a useless strategy, of course.  Anyone in our family would pick up on those words immediately and press for clarification.  Even if they didn’t push for more information, they would be waiting for the next shoe to drop. 

Advice to others with Alzheimer’s: Do not try to break anyone in “gently” unless you’re prepared to tell a bald-faced lie to keep the conversation from going to the end.  They are going to worry.  (That probably won’t stop me from trying to postpone telling my other sister Laurie before I visit her.)

After we’d arrived on the island later yesterday evening, Lois and I told her husband Fred.  Given his career as a psychiatrist, I was hardly surprised that he had no visible emotional reaction, although I’m beginning to find such matter-of-fact responses more and more helpful.  It’s good to be able to talk easily and frankly about what’s going on.  We talked mostly about Alzheimer’s from a medical point of view, and I got some new information.  He said that there were new drugs in Phase II testing (to see if a drug is safe) that showed some hope for preventing the deposit of “beta amyloid,” the protein that is deposited around the neurons.  The resulting dysfunction of those neurons is considered the primary cause of the cognitive decline.  Although there’s no clinical evidence yet, the possibility that medications might ultimately be able reverse (or at least stop the progression of) early disease seems reasonable.  Lois, of course, was very interested in getting me into s drug trial, but since the current phase is multi-national, taking a total of 200 patients and tens of thousands probably clamoring to get in, the chances are minuscule.  There will undoubtedly be Phase III trials (to further test for whether a drug is effective).  I find myself curiously (even irrationally) resistant to the idea.  Part of Alzheimer’s symptoms is apathy.  Is that what’s keeping me passive?  Well, it’s certainly a part of it.  Truth is, I just don’t want to be bothered with pushing for inclusion into a trial that I don’t stand much of a chance of getting into anyway.