When being in the position of 24/7 caregiving for a spouse with early onset Alzheimer's there is not really much time to get to the computer and offer thoughts about the experience. So this is just a quick beginning to lay out some possible topics for the future.
1. What do we think the status of our caregiving is when compared to those caregiving in a variety of other medical conditions from terminal cancer to the range of physical conditions which may have long recuperation periods but have light at the end of the tunnel? Or what about the quadriplegic receiving care, but with their mental capacities quite stable? What would a taxonomy of "caregiving" look like and how might it identify specific issues faced by AD caregivers?
2. What has been people's experience with connecting the dots once an official diagnosis was obtained? How far back can one go in suddenly making sense of a pattern of behaviors, none all that debilitating, but now comprehensible with an AD diagnosis. In my case I can probably begin a narrative predating the diagnosis by at least 10 years. So was this denial at the time or what?
3. How do we imagine the consciousness and awareness of the spouse who is still at many levels able to function, but not without our hovering presence? For instance, yesterday, my wife received a juror summons and I called the court to see how it should be handled. My wife and I were sitting at the dinning room table when I made the call and she heard me mention Alzheimer's. After I hung up, we had a rather uncomfortable moment as she verbally confronted me, saying why hadn't anyone told her. She got very upset, but as usual this passed. The point is that for the last five years she has been part of the ongoing therapy routine with the doctor(s), medication [foltex, namenda, aricept], and participation in various University based studies. Even during the first several years after the official diagnosis, she would openly tell people about her condition. So is this a new stage or part of our ongoing life of avoidance, not so much denial?
4. What is one's experience with the spouse losing all initiative and agency?
5. What is the experience with the power of pets? In our case our dog, which we got in a shelter 18 months ago, has proved crucial in terms of a cementing focus and shared experience. This despite the fact that the dog, a male, treats me as the Alpha figure, and being aware of my wife's anomalous behavior frequently growls at her--though in the developing narrative this seems to have been adequately integrated into her world picture.
6. How have people dealt with the closing circle of acquaintances? This is a quite complex issue. People want to be kind and support and often say the right things, but in fact you see them gradually withdrawing, and understandably. Also this means that as a couple one is not really meeting new people because the only people that work with the situation are those who at least share some past history, which is why of course that family members are crucial. Along with this is the dynamic of the telephone conversation--I end up taking over because otherwise the talk goes dead, but this defeats the purpose of people interacting with her.
Well this is a start. Hopefully I will find time to elaborate on the ongoing experience, given these themes and others as they develop.
