April 8, 2000
The Alzheimer's Conference Update

Jessie Thompson Eustice speaks at the conferenceThe Alzheimer's Conference, which is organized by Lisa Gwyther of the Neurological Disorders Clinic and the Family Support Program at Duke University, is the only good thing I know about Alzheimer's Disease.  It allows caregivers, doctors and professionals to come together and hear the latest from each other.  It gives caregivers a sense of hope that their efforts are recognized. It has given people with Alzheimer's such as Cary Henderson and my father a sense that their plight has meaning, that their suffering may go to help others in the future.  My father and I have been involved as speakers in this conference since 1996. (Read Jessie's notes for her speech here)

I think a good summary of the news coming out of the Conference this year is contained in the following five statements.  #1: Researchers expect to find a treatment and or a preventive vaccine within the decade. #2: Researchers have divided into two camps, and they are competing. The two camps are the Tau Protein camp, and the Amyloid Beta camp.  A third approach is that Alzheimer's is caused by a number of interacting factors involving genes and environment.  #3: Culture and spiritual beliefs are very important determiners of how a loved one with Alzheimer's will be cared for, and how healthy the caregiver will remain. #4: Occupational Therapy and Nursing have a lot to offer about how to improve long-term-care, but the biggest challenge of all is to change the culture of Long-Term-Care. Finally #5: That hopefully our Long-Term-Care woes of today will be moot by the next decade because Alzheimer's will be eliminated.

This year I served on a panel whose focus was on Making Nursing Homes Work for Families.  Pat Howard, one of the CNAs who works in dad's unit came with me as another speaker on the panel.  Pat Howard is an amazing person in her own right.  She has two children at home, and drives quite a way from Roxboro, NC, to her job at dad's facility.   At dad's facility, she has many responsibilities, which she carries out with grace.

A man named Darryl, also a caregiver, spoke.  Darryl's mother had just recently been admitted to an assisted living facility.  Darryl was struggling with the emotions so familiar to caregivers, when they finally realize the caregiving job is too great and that their loved one needs the 24 hour care of a long-term facility.  The feelings are so horrible.  Guilt that one cannot care for their own.  Sorrow at the loss.  Searing pain at the thought of the separation and grieving the dependent family member must also go through.  Darryl, whose brother had passed away only a week before the Conference, was struggling to figure out how to help his mother.  Among his struggles, he was very concerned about the possibility that his mother was being medicated for agitation before non-medical interventions had been tried.

Another speaker, Turner Stimpson, coordinates and supervises a transportation system for elderly and disabled people.  He makes it possible for dementia patients to get out and get a change of scenery.  We all need relief from day to day life, and we can all identify with the refreshment provided by a drive in the country or a sightseeing trip, but do we realize that dementia patients rarely share this simple pleasure?  Do we know how much it might help someone's mood?  It is great that Turner Stimpson was there to demonstrate that dementia patients can go on day trips.

Coincidentally, Dr.Boustani, dad's doctor works with Dr. Schmechel, the Conference Keynote speaker, and the Director of the Joseph and Kathleen Bryan Alzheimer's Research Center at Duke.  When Dr. Boustani heard that Pat Howard and I were speaking on a panel at the conference, he saw to it that the main floor nurse on dad's unit, Pat Ray, could also attend.  Two people brought dad, the Activities Director at dad's facility Kris Snyder, and Lynn Griesemer of the Charles House Adult Day Care Center that dad used to attend.  I had also arranged for Ann Bajwa, dad's friend, and the LPN who worked with dad for about the last six months that he lived alone, to be there.

It was miraculous to have such a network of dad's care-giving professionals there.  For my part, I showed slides of Dad's room, Pat Howard taking care of dad, and of dad singing with Elizabeth Oudejans and me.   I talked about the mental tricks I use on myself to help me when I don't want to stay involved at dad's facility, showed slides, and played a tape of Dad and I singing.  Pat Howard talked about her approach to dad and the other residents under her care.  It was clear to us all that it takes a special kind of person to do her job and do it well.  She has many demands to meet, and somehow she still stays focused on the needs of the residents.

Tommy's room at Britthaven.  Note the Fool Moon poster and the very early picture of the Red Clay Ramblers
After the presentations, there was a question and answer period.  One questioner asked me to tell specifically how we moved from medication to music therapy for dad's agitation.  I could only tell it from my perspective, but fortunately for us all, Dr. Boustani was in the audience.  He was able to come up and describe the A-B-C form of observation we used to identify the probable causes of dad's difficulties, and then devise a non-medical intervention to prevent the problem. Pat Ray and Pat Howard are part of the team which carries out the intervention, so it was very cool that we were all there.

At this point, the conference organizers are just starting to sift through the conference evaluations that were filled out by the 500+ who attended.  Lisa Gwyther tells me that she hears from people all year long about how they were affected by the conference.  I pray that my work helps dad, and if not him, someone that follows him.  I want his inspiration to live on.

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Besides Tommy's section of the site, the following pages are also related to Jesse and Tommy:
Blurred Time "The Sleeper": the aftermath of Jesse and Bobbie's car accident
Mike Craver's "Visiting Tommy"
Roots of the Red Clay Ramblers:
Fuzzy Mountain String Band: Jesse's mom, Bobbie, recorded with Rambler Bill Hicks and others
Hollow Rock String Band: Tommy and Bobbie Thompson named this band for their community

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April 8, 2000