Showing posts with label Alzheimer's disease. Show all posts
Showing posts with label Alzheimer's disease. Show all posts

Friday, July 23, 2010

The spaces between my fingers

Earlier this week, I had the opportunity to meet the folks behind an inspiring grassroots movement whose mission is to raise awareness about Alzheimer's disease and share wisdom between the generations, called The Spaces Between Your Fingers. Matthew Smith is currently engaged in a 30-day road trip across the country, using supplies that he purchased last year with his life savings to facilitate several 90 minute workshops in 13 different cities -- with, I imagine, some unplanned stops along the way. Participants come together in small groups and Mr. Smith shares a brief personal story of the life and loss of his grandfather, Dr. William McNamee, who died of Alzheimer's disease in 2003. In a letter to his grandson he asked him to think of him when he looked at the spaces between his fingers:
"Any time you want to find me, you don’t have to look far. Just look down at the spaces between your fingers—where my hand used to be—and instead of thinking of all that’s keeping us apart, remember this great force that’s holding us together, and always will."
Through some facilitated questions and discussion, participants are guided through memories from their childhoods, think back to lessons learned throughout their lives, and conjure up a piece of wisdom that they've gained and would like to pass on to the next generation. On a postcard, they trace an outline of their own hand, and then fill it in with their advice. Mr. Smith is collecting thousands of these postcards from individuals of all ages around the country, and will eventually combine them into a physical art installation and book, which will be used to promote awareness about Alzheimer's disease.

I am a volunteer co-facilitator of a support group for individuals living with early-stage memory loss that is held on Wednesdays mornings at the San Diego/Imperial County chapter of the Alzheimer's Association, who was contacted by Mr. Smith with a request to provide this free workshop to a group of individuals living with memory loss. The idea of the project was met with enthusiasm by our support group members, and we've been looking forward to his arrival on the west coast. The workshop this week was a great experience for the participants, sharing stories from their childhoods and early careers (a few of which I had heard over the seven years I've been facilitating the group, but most of which I had not). The telling of old stories by an individual who is progressively losing their memory is always a profound experience, and it's an honor to be there to receive these fleeting treasures. Wednesday mornings are always a highlight in my week.

Naturally, my mind wandered away from the table a few times and I got to thinking about my own childhood, the people who have influenced me, and some important lessons I've already learned in my short 35 years. Not many days go by that I don't think about my maternal grandmother Phyllis, who was - and is - a central figure in my life, and died in 2005. The summer that I was fourteen, my grandma undertook the task of teaching me to sew. She was an amazing seamstress, and had passed her skills along to her own talented daughters as well. My mom had not yet had an opportunity to teach me to sew; she was raising her three kids in a different era that required her to work full time and manage a busy household. But this is the gift of grandparents! They have time and space in their days that the rest of us simply don't have, and Grandma had decided that it was time that I learned. My first project was a black calico print dress that I'll never forget. I remember selecting a pattern in the shop, browsing for fabrics, and the afternoons of learning to cut, pin, and press, and getting familiar with the feel of the sewing machine on countless scraps in my grandma's sunny sewing room. It frustrated me to spend days practicing before I could even make the first cut into that pretty black fabric, but Grandma was adamant. That summer she taught me the importance of not just "doing things," but doing them right. She taught me that anything I make should look as good from the inside as it does from the outside. Straight stitching and clean seams (even if other people will never see them) not only make your clothes fit better, but they make you feel good about your work when you put them on. The things that I do in life need to not just look good to other people from the outside; they need to look good to me from the inside as well. I hope that Grandma Phyllis knew how important that time that summer with her was, and I suspect that she did. Today whenever the spaces between my fingers are filled with pins and crinkly tissue paper, or are guiding a piece fabric through a sewing machine, I think back to that sunny room and all of the love and laughter there, and that little bit of becoming who I am.

What a gift my grandmother was to me -- and that all members of an older generation are to those who follow them. Those of us who spend our days engaged in service to our elders are constant recipients of these gifts, and every day I know I chose the right path. I thank Matthew Smith and everyone who is supporting him in his project for this opportunity to spend some time in personal reflection, and for providing the members of our support group who live day in and day out with the frustration of a failing short-term memory with this valuable opportunity to tell stories and teach lessons. To answer Dr. William Thomas' important question: this is what old people are for.

Thursday, August 27, 2009

Out & About: A Quality Life Program for people with Alzheimer's Disease

Do you have a loved one who has Alzheimer's disease? Are you looking for a wonderful program that will provide them four hours of mental and social stimulation, and provide respite for the family as well? Well, do we have a program for you!

Let me introduce you to the UCSD Shiley-Marcos Alzheimer's Disease Research Center's program called Out & About. This lively program provides outings for individuals who have beginning stage Alzheimer's disease or other related forms of dementia.

The program runs for a series of eight weeks, meeting every Tuesday from 11:00 am to 3:00pm. The event includes lunch, transport to and from the outing, docent tours, staff to drive and accompany the group and mileage.

Examples of some of the outings are the IMAX Theater, Museum of Man, Chula Vista Nature Preserve, Cuyamaca Water Conservancy Garden and many more. We've enjoyed lunches at Pizza Nova, Chicken Pie Shop, and Perry's, just to name a few. The outings are enjoyable not only because they are culturally enriching but because of the interaction the participants have with each other.

I have hosted the Point Loma group for three 8-week sessions and I can say from experience that friendships develop, good natured teasing and laughter are heard and most importantly, the participants have a wonderful time.

Participants need to be able to walk short distances, stay on their feet for periods of about 1 hour, use the restrooms independently, hear and see adequately (enough to enjoy the outing), and be willing and interested in the activity.

The Out & About Program is also brought to you by the Alzheimer's Association, Elder Care Guides and Senior Life Assistance. For more information regarding this program please contact Lisa Snyder, LCSW, Program Director at UCSD Shiley Marcos ADRC at 858-622-5800 or lsnyder@ucsd.edu.

Tuesday, June 23, 2009

The Caregiving Journey

Announcing a free town hall forum for those providing care to a person with Alzheimer's disease or a related dementia, "The Caregiving Journey: Practical Advice from Experts in the Field." This informational morning session will feature local professionals providing information for caregivers to protect themselves and their loved ones.

Thursday July 30, 2009
8:30 a.m. to 12:30 p.m.
Lake San Marcos Resort Conference Center
1025 La Bonita Drive
San Marcos, CA 92078

Featured speakers:
  • Alan Berkowitz, MD (Geriatric psychiatrist)
  • Dawn Carnerie-DeStefani, BSW (Social worker and adult day center manager)
  • Neil Levine, MD (Internist)
  • Scott Stewart (Elder law attorney)
Topics to be covered:
  • Overview of the different stages of Alzheimer's disease
  • Nutrition and hydration in Alzheimer's disease
  • Long term care costs and planning for the future
  • Legal decisions following a diagnosis of dementia
  • Exploring adult day care centers
To RSVP, call Health Care Group at (858) 565-4424. Three hours of continuing education credit will be offered for professionals through the California Board of Behavioral Sciences and the Board of Registered Nursing.

Health Care Group, Glenner Alzheimer's Family Centers, AARP, and the Southern Caregiver Resource Center are presenting this event, and free adult day care will be offered at the Glenner Alzheimer's Family Center in Encinitas. Call (760) 635-1895 to arrange.