Sunday, March 29, 2009

An interesting Alzheimer's symptom

No, it's not a craving for Lebanese food, although ... I may have that after Tuesday evening up in D.C. Bob's brother Doug and his family picked us up at the hotel and we walked over to this wonderful restaurant. No recession problems there: it was packed and full of chatter and laughter. Maybe a bit too much for Bob who was pretty exhausted from the day but who held up amazingly well through the entire three days -- every bit as well as I did:)
After a glass of wine, he was even more tired and it was a difficult moment when he tried to speak to his nephew Alex but had no idea exactly where Alex was and he directed the question to Isabel, his sister in law.
This condition is called agnosia, from Latin meaning "to not know." This exhibits itself in Bob's loss of the ability to recognize things or people, not because he has forgotten them or because his eyes are not working (those have been well checked), but because the brain is not able to put together the information properly. I think agnosia causes many, many of the issues Bob struggles with; he can not easily sit down to eat a meal as he can't "find" his fork or an item on his plate. He can't "find" his shoes. It is not that he doesn't remember what they are; he can not "see" them. This is also why when his sister Carolyn arrived at his day care center, Bob could not immediately greet her; he needed her voice so he knew who she was.
Such a strange disease and how amazing is the brain.

Wednesday, March 25, 2009

The assault on the Hill

How invigorating to be an advocate and go from office to office meeting with public officials who have the power to really make a difference.
Alzheimer's is the 6th leading cause of death in the US.
How humbling to realize that most of their days are spent meeting with folks just like us with (almost) equally worthy causes.
It is currently estimated that people over 65 years of age have a 10% chance of developing Alzheimer's, while those over 85 have a 50% likelihood of developing AD.
The Missouri delegation, all 24 of us, outside Senator Claire McCaskill's office, our first appointment.

We were asking for three things: money, a government office, and a change in the two year Medicare waiting period for people disabled by the disease before they are 65.

We want $250 million more for the next two years to bring the annual federal total commitment to Alzheimer's research to $1 billion. Without a cure and with the aging of the baby boomer generation, this disease will cripple our nation's health care system.
By comparison the National Cancer Institute receives over $4 billion annually. We want Alzheimer's survivors too.

A fun moment: one of Claire's staffers came out to take this pic and then another arrived and offered to help. I looked at her, looked again; she was looking at me.
"Were you my student?"
Yup, I taught her in 2001 in Honors Soph English.

Healthcare News: 20/03/2009 There is renewed hope of finding a drug to treat Alzheimer's disease as scientists say they are closer than ever to a discovery.

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.

Sunday, March 22, 2009

Caregiver Musings

Falling from your lap,
photos unPolaroid
as you watch them flicker.
(Life is but a casting off.)
I grasp for the purple scarf
lost in the slightest breeze;
you giggle as it flutters,
then you forget.
Straight jacketed in cobwebs,
I crave your disease.

Sunday, March 15, 2009

The Audacity of Hope

So we're going to a new doctor. Bob's been to our internist, a psychologist, and two neurologists; the experience with each was to "test" a bit, hand over a prescription, and dismiss us for another six months.
We're now seeing a geriatric psychiatrist. He is Indian and his early training was at the University of Bombay; he believes in the power of lifestyle and diet to bring about change. We're eating better and differently; Bob's still on the same meds, but we exercise like it's a prescription (it is), we drink green tea and I use turmeric in my cooking.
Bob is excited and hopeful. I feel like we're finally doing something; whether or not we'll succeed against Alzheimer's remains to be seen, but we have taken back some power.
Still when I hear Bob talk to people and repeatedly tell them, with great excitement, that he's no worse than he was when first diagnosed, I am saddened.
My "let's get it right" brain screams out to correct him, but, of course,
I don't. Ahh, the audacity of hope.