Tuesday, March 24, 2009

Preparing to be Advocates

Alzheimer's Association Public Policy Forum, Washington D.C.
Day One, Monday, March 23, the Candlelight Vigil at the Lincoln Memorial

In the past few years, I've hardened myself against pity; I refuse to fear the future. I live the cliche: one day at a time, this moment now, but Monday night I found myself crying as I listened to the stories of three caregivers, heard of their losses, felt pain in the deepest core of my being.
For every diagnosed sufferer of Alzheimer's, countless others share the disease.
5.3 million people have Alzheimer's
9.9 million people are unpaid caregivers

I watched the flickering candles next to the reflecting pool and thought of the shared suffering. At the foot of the Lincoln Memorial I thought of that President's grief and losses and of the hope and strength he continues to give this nation. I thought of Mary Todd and the caregiver she tried to be and the men who kept her from her dying husband's bedside.

Without pain we have nothing to overcome, no weights to lift and pump iron into our veins. Standing together in solidarity Monday night, I may have cried but I did not feel alone.

Day Two, Tuesday, March 24, Training to be advocates
All day in meetings being poured full of information as we prepare for our assault on the Hill. Over lunch we watched previews for the upcoming HBO special, The Alzheimer's Project. The most horrifying moment of my D.C. experience was a minute or less from those previews.

How do you describe the complete loss of self? A picture is worth a 1000 words. One man and his wife -- maybe 8 shots or 9 -- as she left him. I don't mean as she physically died; I mean as she ... left him the way Alzheimer's makes a person go away. Her face lost its musculature; she developed jowls; all of her sagged. I could only see her folding inward, the going away, the being lost but not even having an awareness of loss.

I'm pretty sure I can't watch the entire four hours of the show, and I'm fairly certain that I will. I do not want Bob to see it: he is an innocent child, without awareness of where he's heading on this trip. It's better to enjoy the journey and not focus on the destination.

A new case every 70 seconds

On a positive note for Tuesday, I want to remind us all that Bob is a happy camper; at times I even think he seems better, but that too is a feature of the disease.
Not everyone is as lucky as Bob in attitude. Tuesday we met a woman who is just two months older than he and is awaiting her official Alzheimer's Disease diagnosis. They, she and her daughter/caregiver, had to wait until she turned 65 and had Medicare to afford the doctor's visits and the medical tests. But, they know. Let's call this woman Sue; her mother died of Alzheimer's, so did her grandmother. What must her daughter think? No wonder they went to Washington to advocate.
Sue isn't as lucky as Bob since she has no support groups where she lives. Her daughter is busy raising two small kids and does the best she can but is clearly between a rock and a hard place. Sue's friends all turned away. She lit up and grabbed Bob's hand when she learned what they shared. It was as if she'd found a long lost friend, one who would understand her better than anybody else.
Eventually the disease will make her forget the friends she's lost; for now she is alone with her memories and her emptiness.


  1. I LOVE this photo of you guys. :)

    I can imagine how sad that photo sequence was in the film preview. I don't really think you should watch the full film. Unless you really think there is some good that would come of it?

  2. I'm inclined to agree with Kelly. What good can come of it? It's surely beneficial for people who do understand the depth of the disease, though. I hope lots of people tune in.