Alzheimer’s Victims’ Kin Feel Impact
Joan Dashiell says that families of Alzheimer’s disease victims need more R&R.; But she doesn’t mean rest and relaxation, of which there is most often none. She means research and respite.
Dashiell, founder of the Orange County chapter of the national Alzheimer’s Disease and Related Disorders Assn., was honored Wednesday night at an intimate, elegant dinner at the Pacific Club in Newport Beach. Attending were 40 charter members and friends of the Founder’s Club, who, according to member Leonard Broido, generated contributions and pledges totaling $26,000 in support of “A.D.†victims and their families.
Most of those present had had a member of their family afflicted with the disease, which is a progressive disorder of the brain affecting memory, thought and language that eventually devastates its victim’s personality and identity.
Dashiell, whose mother has both Alzheimer’s disease and cancer, is encouraged about “fabulous research†under way at UC Irvine in the areas of Alzheimer’s and dementia.
“On the other hand,†she said, “the greatest cry that’s come out of A.D. task force meetings concerns respite--temporary relief for members of victims’ families. Right now, there’s not a dime for these families. They have to spend down to the poverty level before they get any assistance.
“Alzheimer’s is ‘in’ right now. It’s on the cutting edge. If we can push these things through for the Alzheimer family, then the families of dementia and other brain-damaged patients will start falling in right behind.â€
According to Dashiell, Alzheimer’s disease is also on the cutting edge of bioethics.
“The family right now has no control over whether a person lives or dies,†she said. “If patients are in a nursing home, they’ll get tube fed (to keep them alive). If they get pneumonia, antibiotics will immediately be poured into them. But very often the families are saying, ‘Why?’ Society is saying, ‘You have to go to court to get that tube removed.’ Can we give control back to the family?
Decides Against Tubes
“I had my mom in a nursing home. But I decided I don’t want tube feeding, I don’t want antibiotics. I want her comfortable. And when it’s her time to go. . . . “
For attorney Martin Schneyer’s mother, who died of the disease, matters advanced more quickly. “Fifteen months,†Schneyer said. “We could pinpoint the day. She was doing work for my brother, doing his billing. One day she was able to do it, the next day she was not able to do it.â€
Charlie and Nora Hester had a similar experience.
“Nora’s sister-in-law was a very good cook,†Charlie Hester recalled. “One morning she fixed a breakfast. Only she wasn’t cooking anything. She just thought she was.â€
Nina Harper talked about the growth of Dashiell’s role as an advocate on behalf of Alzheimer’s disease victims.
“Like many of us, Joan learned how to spell Alzheimer’s when it invaded her family,†Harper said. “She became astonished at the number of families affected and by the total lack of services. She became a one-person clearinghouse for information. She set up a resource and referral service on her dining room table--she and (her husband) George sort of had breakfast with the Roladex.
‘Roladexes Grew’
“She took her soapbox and would talk to anybody who’d listen. She set up training programs to teach people how to deal with A.D. patients. The phones started ringing, the Roladexes grew, and pretty soon we were serving more than 40,000 people. The national organization asked her to join its board of directors. The state of California appointed her to (a) task force.â€
