Monday, March 12, 2012

Alzheimer’s Cafe, Seattle – Tues. March 13th, at Mae’s

from Witnessing Alzheimer's: A Caregiver's View
Esther Altshul Helfgott

The AARP Bulletin reports that “Alzheimer’s cafés offer a safe and supportive space for patients, caregivers and loved ones to share similar experiences and chat over refreshments.

Mae's, Yummy

Each café varies in setting, from schools to pubs. The concept has resonated most with Europeans: More than 60 cafés exist in the Netherlands, and the United Kingdom is home to some 20 [as of April 2011]. The United States launched its first in Santa Fe, N.M., in 2008.

“It gives people permission to be themselves,” says Alzheimer’s expert Jytte Lokvig, who operates Santa Fe’s café, held monthly in a children’s museum.”

Seattle’s Alzheimer’s Cafe sponsored by the Greenwood Senior Center is held the second Tuesday of each month at Mae’s Phinney Ridge Café, 6412 Phinney Ave N.
This month’s St. Patricks Day Gathering
Tuesday, March 13, 3:30-5:00 PM

Facilitated by Carin Mack, M.S.W., the Alzheimer’s Café provides * An opportunity to get out and socialize in a safe environment. *Good food and fun! * No judgment, no expectations—just support. *No cost other than the food ordered.

Questions? Carin Mack, MSW at 206-297-0875 or visit Greenwood Senior Center. Find street parking or park at the Phinney Neighborhood Center at 67th and Phinney .

Seattle could use more Alzheimer’s cafes. Here’s a bit of history on their development and a manual for creating one.
Seattle could use more Alzheimer’s cafes. Here’s a bit of history on their development and a manual for creating one.

Carin Mack and friend

Thanks for stopping by,

*The Alzheimer’s Café: why it works by Gemma M. M. Jones
*Wide Spectrum: Dementia Education
*Online discussions: Alzheimer’s Foundation of America; Alzheimer’s Association online community
Videos: Staffordshire; Sante FE

He was never a ‘shadow’ to me

Esther Altshul Helfgott

Last night's moon.
Photo by E.A.Helfgott

I normally don’t use the word “soul,” but I will today because I’m trying to understand why people use the word “shadow” to describe what happens to the Alzheimer’s patient as he or she begins losing memory and functionality.

Let’s say there is such a thing as a soul, a fundamental essence, something that’s always within a person, regardless of what happens to him or to her on the outside – in terms of looks, behavior, or circumstance.

Let’s say we meet someone in life whose soul touches ours so deeply that even if the two don’t always understand each other on a day-to-day basis or get along with one another all the time, something inside of each stays connected with the other.

Let’s say one of these people gets sick in such a way that most people don’t understand him anymore. Little by little this sick person loses his knowledge about the past, about who people are, what his relationship was with them, even with his wife and children.

Let’s say he’s even forgotten what position he held in the world. In fact, one day he asks his wife: “What kind of business was I in?” His wife says: “You were a doctor.” “A doctor?” he asks in surprise. “Yes, you were a doctor.” “That’s nice,” he says, and goes back to looking at a picture book.

Would you say that this man is a shadow of his former self? I wouldn’t. I’d say he was stricken with a disease that erased his memory and that this erasure stripped him of the capacity to live life the way he used to. He is not a shadow. He is who he always was; he’s just living differently now. His outside self, the one the world sees, has changed; but the inner self, call it a soul, is there. Take time to look. If you choose not to, or if you can’t, that doesn’t mean you’re looking at a shadow.

I never saw Abe as a shadow of a former self. To me, he was Abe until the moment he died. He might have lost his memory, his executive skills, body movements and a host of other things, but if there is such a thing as a soul, Abe’s was intact.

We’re all looking for the “right” way to be around Alzheimer’s. We’re searching for appropriate words to use, but language is difficult. We need to choose words that don’t diminish a person’s essence, that don’t make him or her less on the inside than he or she still is.

This morning’s New York Times included an article about the writer Jeanette Winterspoon (Arts, C31). She writes: “Whatever is on the outside can be taken away at any time. Only what is inside you is safe.” We need to keep people diagnosed with Alzheimer’s safe, especially from humiliation. People living with Alzheimer’s are not shadows. Let’s not make them so.

Emma, Lake Washington.
Photo by E.A. Helfgott

Thanks for stopping by,

It doesn't matter if they know you, visit

This morning I went to an Alzheimer’s Association fundraiser at the downtown Hyatt Hotel. I rarely go to such events, but a board member invited me to sit at his table; and it’s such a trustworthy organization, I went. This was a big deal for me because at 7:30 a.m. I do absolutely nothing outside my house except take care of Emma. If I’m still inside at that time, I’m reading or writing or trying to guess two or three words of a crossword puzzle.

I’m glad I went. It was good to hear people speaking publicly about Alzheimer’s and to be in a room with over 400 people giving their time, energy and money to research a disease that, in my daughter’s words, kicks people in the knees and doesn’t let them up.

The wonderful Connie Thompson of KOMO 4 News spoke about caring for her mom. The artist, Kevan Atteberry, talked about caring for his wife, Teri, who has early-onset Alzheimer’s. These two described what I know too well — life in extremity, where no matter what one does, the loved one will not get better.

When I came home, I talked on the phone to my daughter and, then, I walked Emma. A few blocks into our walk, I ran into an acquaintance. We got to talking about Alzheimer’s. (It’s been a year and nine months and I still I don’t know what else to talk about). She asked me: “Did he know you?” I told her what I tell everyone who asks me that question: “It didn’t matter if he knew me. He smiled when I came in. I made him happy.”

People with Alzheimer’s may not remember who you are, but they feel your presence. They know you’re there. Sit with them. Hold her hand. Scratch his back. Visit.

Thanks for stopping by,

from Witnessing Alzheimer's: A Caregiver's View