Q: My mother is 76 and has Alzheimer’s disease. She had a couple of unavoidable stays last year in the hospital (due to falls). This accelerated her decline due to delirium, which was treated as if she was just being an unruly and difficult patient. Once my sister and I understood what was going on due to this site’s information, we have been able to protect and support her.
Right now things are stable and quiet, so we are trying to plan ahead.
How should we go about planning for the years of decline my mother may experience before her actual last moments near death? It’s hard to imagine this possibility and I need help facing the (to me) not so obvious.
We have a will, power of attorney, and health care proxy in place.
A: Great question, and especially good that you’re taking advantage of a “quiet period” to address these issues.
It’s a little tricky to answer this question without knowing more about your mother’s current ability to participate in decision-making and in planning for her future care.
Since you say she’s declined after hospitalizations for falls and delirium, let me assume that she has moderate Alzheimer’s and can’t manage more than perhaps expressing some of what she likes and doesn’t like. (For more on the stages of Alzheimer’s and related dementias, see here.)
At this point, you’ve been through some health crises already, and you’ve seen her decline. You’ve also probably gotten a sense of just how many decisions have to be made on her behalf. Some are about her medical care and some are about other aspects of her life, like where she lives and how she spends her days.
Planning ahead is an excellent idea. Obviously, it’s simply not possible to anticipate and plan for every decision that will come up.
But let me offer you an approach that you can use both now as well as “in the heat of the moment” when specific issues arise. This is a framework to help you navigate all kinds of care decisions and future crises that you may encounter.
The following five steps will give you a foundation for anticipating, processing, and reacting to the complications and problems of later-stage Alzheimer’s, with less anxiety and more confidence. These steps are: [Read more…]