This is not a post about my husband's illness, necessarily. Rather, it is a post about caregiving. More specifically, it is a post about what to do if you'd like to encourage me as his caregiver. Or, actually, what not to do.
There are some pretty terrific films out there about people with Alzheimer's Disease, people who've known people with Alzheimer's Disease, people who are living with people with Alzheimer's Disease, people who visit institutionalized people with Alzheimer's Disease, and so on. The Notebook, Away from Her, and Still Alice come to mind. Please don't suggest that I see the films. In one way or another, I am living them. They are bound to rip my heart out, and I'm sure that's not your intent. Your intent is to show you care, to let me know you were touched by the films, to tell me you want to understand. But unless you are living or have lived my life, you cannot possibly understand. And that is okay. You do not have to understand in order to support me and encourage me.
Along the same vein, I know you are trying to let me know you feel my pain when you tell me devastating stories about your aunt's or uncle's or father's or mother's struggles with something my husband and I aren't dealing with yet. And possibly (because hope springs eternal) will never deal with. Please know that while I appreciate your efforts to empathize, those stories are not helpful unless they pertain to a valuable resource I haven't discovered. You will generally know you are being helpful when my countenance brightens and I ask you for more information.
And speaking of resources, again, I really do appreciate your desire to be caring when you send me articles about medical studies, discoveries, vitamins, oils, diets, cleanses, and all sorts of miracle treatments. Someday, one of them just might be "it." In the meantime, it's a bit demoralizing. It makes me feel as though I'm not doing enough and have possibly missed an opportunity, even though I've read the studies, use the vitamins and oils, and am careful about our nutrition. My husband's neurologist is part of the research team at UC Davis. She specializes in Alzheimer's and dementia. She is fantastic and fabulously knowledgeable. She has told me that if there's anything at all even vaguely promising coming down the pike, we will be the very first to know.
But if you personally know someone who's been diagnosed with early-onset Alzheimer's and has recovered using one of the miracle treatments, by all means, put me in touch with that person. My countenance will brighten, and I'll ask you for more information!
