My brief short-hand notes for the 'speech' I made.

Biggest concern, how was an artist going to live in the Nursing Home?

Along with this was Ann Bajwa's question, “Would medication be used as a substitute for enrichment of his life there?”

How was I going to develop relationships there with the staff that would allow me to sleep at night?

Wally Hill suggested that I start to put on performances with my dad there.

I decorated dad's room with meaningful items, things that remind dad of who he is.

I tried to think of my visits to the nursing home as if I were going to visit dad in his home and to think of the staff as if they were my new family.

I started writing about the painful process we were going through, trying to share not only my feelings about it, but also tell about the experiences and understandings I had with my father that I understood but others did not because of the context of our past.

I want to point you to my writing which you have a copy of in your clinical intensive packet for this session.  My main point is summarized in the first paragraph on the second page.  In the interest of time, I hope you will be able to read that later.

His friends, many writers, artists, and photographers among them, reading my writing, started to respond by volunteering time and talent in numerous ways.

 I heard about an OT study that was being done and got Dad involved. Through that, Dad met an occupational Therapist, Phyllis Hayden, who is here, whose primary concern is to educate families and professionals about how logical an Alzheimer's patient's so-called behavior problems may really make sense and have simple solutions.

With the help of friends and family, and once even Michelle, a staff member, trips out of the nursing home were arranged frequently.

SHOW SLIDES

I took care to try to let myself be open to getting to know the people at the nursing home, and over time I began to learn which ones I could count on, and they got to know me.

As I grew wiser, I tried to follow the chain of command, and not to go over people's heads unless they forced me to.

From occupational therapists and Ann Bajwa, dad's nurse in 1998, I have learned that being creative with instructions is important. A person may not be able to respond to "lift up your arms," while he may be able to process "reach for the sky."

My main Message to doctors and diagnostic professionals, social workers and policy makers, is that the caregivers have an overwhelming job, and no one but the caregiver fully understands all the aspects of the job. I am only able to do what I do because I have a huge support system.  I have a loving husband.  I have the interested ears of dad's friends. I have friends I have made through involvement with the Alzheimer's Association.  The Priest at my Church is very insightful.  And Lisa has acknowledged me by including me in this conference.  So I do not feel alone.  I feel supported.  But I couldn't do it if I did not have all this support.

My main message to policy makers and business people is that the people who make or break a nursing home are the people who work directly with your loved one.  These professional caregivers have to be very special people to get to know your loved one's unique qualities.  Still, they are usually low paid, have too many patients to take care of, and do not always get the in-service training they ought to have to work with the complexity of neurological disorders.

My main message to nursing home staff is that medication is not the only answer to agitation. My own father, a gentle man, was having terrible trouble in the afternoon before dinner. Dr. Bustani, rather than prescribing more ativan, suggested a rest period away from other residents, in his room with familiar music in the afternoons.  Since this, the reports I get are that dad is doing much better.

Jessica T. Justice, Feb. 17, 2000

back to conference report

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