Hope is a concept being linked to Alzheimer's disease like never before, especially since HBO made it the theme-word of its ad campaign for the just-aired series of specials, "The Alzheimer's Project." (You've probably seen the ads; the word "hopeless" is writ large, with the "less" crossed out.)
Do you feel hopeful about Alzheimer's disease?
If your gut-level-truthful answer is no, don't feel bad. You're not alone.
I wholeheartedly applaud the concept and execution of the HBO project. The trouble is that for those in the throes of dementia caregiving, promising developments often inspire a sinking feeling of "nice, but too late for us." All those new drugs in the pipeline, all those influential genetic markers being identified, may seem moot for your loved one, especially if the person has reached a moderate disease stage. Drugs take years to develop, and goodness knows we've been down so many blind alleys; the mechanisms behind Alzheimer's still aren't even fully understood. Discoveries about genetics and biomarkers are also promising, if not immediately actionable.
An imminent cure for Alzheimer's? You're probably not so hopeful about that. Wishful? Yes. Hopeful? Not so much.
**Which is not to say life with Alzheimer's is without hope."" It's just that, especially when you're an Alzheimer's caregiver, its sources aren't always the flashy, grand ones in the headlines. So let's take our hope where we can find it "“ because it is out there:
Find hope in relationships.
Your simple act of caring about someone with the disease is a testament to the strength and enduring power of being there for one another. If that's not a raw source of hope about humanity, I don't know what is.
Find hope in community.
Alas, there's not cheap, good respite care on every corner yet. But finding a knowledgeable expert to quiz for advice is as near as your [local area agency on aging] (http://www.caring.com/local/area-agency-on-agings) or Alzheimer's Association. Community resources may also be as near as your neighbor picking up groceries for you while she's at the store. Or a babysitting-like co-op with other caregivers. Help may seem as distant as a cure, but it's truly a lot closer to you than you think, once you start looking.
Find hope in the arts.
One of the most fascinating aspects of having Alzheimer's is how restorative it seems to be to participate in the arts. In the HBO special, a man who can't keep remember where he's going or where he's been can nonetheless stand up before an audience and beautifully, flawlessly, sing a song. For many people with dementia, freedom from lifelong inhibitions makes them more creative. This is an area where it's easier for caregivers to focus on function and possibility, rather than sheer loss.
Find hope right here, online.
Find hope every time the disease gets prime-time mention.
I've written about the value of de-stigmatizing Alzheimer's before, but it's so true: Every time Alzheimer's is discussed in the prominent corners of our culture makes it easier for me to cancel on a friend at the last minute if I'm "dad-sitting," knowing she'll understand, or for you tell your employer about your mother in discussing the need for flex time. Ultimately, the incredible de-stigmatization of this disease in recent years emboldens more businesses to investigate putting respite care on every corner or to fund research into practical therapies that caregivers can use to cope.
So there's real hope in every prime-time message about Alzheimer's "“ whether it's Maria Shriver doing the talking or Michael Caine playing a man with dementia in his next movie or the inspiring families on the HBO "Alzheimer's Project" documentaries, who put themselves and their pain out there to be filmed so that others might receive illumination and kinship...two things which are themselves a kind of hope.