UC Davis ADNI Update

September 11, 2018

Today was the scheduled update survey for the ADNI study that we've been participating in pretty much since diagnosis. At first, the survey was done more regularly and in person with both of us in attendance, then it transitioned to longer intervals, then it became a phone interview.

First, the psychologist called to ask a lot of questions having to do with my husband's state of mind, moods, behaviors, and so on. I found it interesting that most of them would have been really relevant last year or the year before or even the year before that. But he seems to be past most of the issues she was bringing up at this point. It's sobering. Still, I think my responses were helpful, at least. She also asked questions about my well being, which I appreciated. It's important to track the patient, but it's also important to track how the patient's illness is affecting the caregiver.

Then, the research assistant called with the actual survey questions which, in my current state of mind, were laugh out loud hilarious to me:  Is your husband having trouble with his memory? Compared to 10 years ago, how is he at writing checks and balancing the checkbook? Can he remember a short shopping list? Can he remember a conversation a couple of days after having it? How is his driving? Is he able to read a map and find his way to a new destination? How is he at planning a project, preparing for it, and executing it? Regarding household chores, is he able to vacuum, do laundry, fold clothes? Lady, he can't put his shoes on or dress himself!

There was a lot more, but I'm sure you get the picture. These are the same questions that are asked every couple of years, and I think what they are doing is updating their database to track the course of the disease. I understand that. The only way they can track things is by recording your answer to the same survey questions over and over; however, it seems as though they could add a new component that would clarify the end stage time frame for their study, since the questions they're asking only highlight the dramatic difference between then and now. But what do I know? Maybe this survey is actually doing that, somehow.

Then. And now. Wow. Did I say the difference is dramatic? It's more than dramatic. It's breathtaking. Heart stopping. So, yes, this survey is actually doing that, somehow. For me, anyway.

How to Discourage a Caregiver

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!