Every Patient's Advocate

Alzheimer’s Patient “Wakes Up”

Those of you who read this blog know my mother has Alzheimer’s Disease. We began to notice problems almost 10 years ago, and my father, sisters and I have suffered along side her.

Last February, I watched an episode of Grey’s Anatomy, when Ellis Grey, the mother of the main character, “woke up” from her Alzheimer’s Disease for a day. The episode was disconcerting, but hopeful, but frustrating, and raised the question of whether that was really possible.

At the time I could find no references online that spoke to this possibility. I blogged about it. Read the post here.

A few days ago, I heard from Loretta, whose mother had the same experience as Ellis Grey did. Her mother was lucid for hours and hours, talked to all their family members, couldn’t believe she had been “out” for years, got all caught up on family happenings…. The family all witnessed the phenomenon — and they video taped it.

I was flabbergasted by Loretta’s email! I believe every word of it. And Loretta and I have exchanged several more emails since then. She even gave me permission to share it with all of you.

And of course, dozens of questions popped into my head…. One of the biggest was — does this happen more frequently than we realize? Are there others who have had this experience, but when they ask the professionals about it, they are dismissed?

And more importantly — can we learn anything about this disease from those who do “wake up” even if it’s just for a short period of time? Does anyone track it? Have others video taped it?

Loretta tells me that the caregivers at her mother’s assisted living center have witnessed it before with other patients. To those who care for Alzheimer’s patients, this doesn’t seem at all unusual.

But why are there no studies? Why isn’t it part of the literature?

Yes — I do know many of the questions we loved ones must face. If I could have my mother back for just a day, knowing she would later retreat to her Alzheimer’s fog, would I want her to be lucid again? Would it be heartbreaking? Or joyful? What would we talk about? Would she be sad or angry? At the end, would we be sad or angry — or simply thrilled that we enjoyed some “bonus” time with her that had been unexpected?

But all of those questions, in my opinion, pale in comparison to what we could learn — for future sufferers. Does this only occur a few years into the disease? Can we figure out what triggers the awakening? Can we draw conclusions about the biology of it? Does it give us some clues as to where the memories have gone, if they have gone anywhere? And of course, dozens more.

What if we began comparing notes? What if we started tracking the phenomenon?

There are so many possibilities for learning about the disease if we can just corral the experiences!

So I have built a page on this blog where those of you readers who have had experiences, or have questions, can begin to share your thoughts. If it outgrows this blog, then perhaps I’ll start another one.

Link to the Alzheimer’s Reports page here — which also includes Loretta’s email to me.

If you know of other resources about this particular phenomenon, please let me know. (Not just Alzheimer’s resources in general — it’s a huge topic, with excellent resources, and one more won’t contribute to the discussion.) You’ll find contact information at Alzheimer’s Reports.

Talk about patient advocacy!! The strength and purpose of individuals who care — let’s see what we can do!

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