Jane Spilko
Alan Richelson
Barbara Nunn

Through seven years of her mother’s slow degeneration from Alzheimer’s disease, Jane Spilko’s role as a caregiver was painfully all-consuming.

“I can tell you my story, you can tell me your story, but I think we have a common link and that is devastation —devastation financially, emotionally and spiritually,” Ms. Spilko said Monday, speaking at a public forum geared toward improving Alzheimer’s services in the state.

Ms. Spilko, whose mother died in 2005, was one of several local caregivers who testified at the forum, held at the Jewish Cultural Center on North Terrace Road, about the sweeping damage inflicted by Alzheimer’s.

“Most times people don’t rally to causes unless they’re faced with it, and that is very true with Alzheimer’s disease,” said Ms. Spilko, who was the primary caregiver for the last seven years of her mother’s life. “I think we really have to get on the bandwagon and get people in our country ... to listen up because it’s going to really, really, really cause immeasurable social problems for us. It is already.”

The public forum was the sixth and final stop for the state Alzheimer’s Task Force, a 14-member commission appointed by Gov. Phil Bredesen to determine the failings and strengths of Alzheimer’s diagnosis, treatment and support in Tennessee.

The task force will bring details of caregivers’ struggles directly to the governor in hope of spurring new legislation, awareness and funding for services to address the growing incidence of Alzheimer’s disease, here and nationally, said the forum’s moderator Sally Brewer, area program director for the Alzheimer’s Association’s regional office in Chattanooga. The task force will present a report on the forums to the governor by February 2009, she said.

The likelihood of developing Alzheimer’s increases after age 65, and, as the number of people living into their 80s and 90s grows, the incidence of Alzheimer’s and other dementias will skyrocket, according to the Alzheimer’s Association.

A repeated concern among Alzheimer’s caregivers is the lack of training for health care professionals in recognizing and treating Alzheimer’s patients, as well as the need for primary care physicians to diagnose the disease.

About 100,000 people in Tennessee are diagnosed with Alzheimer’s, Ms. Brewer said.

Chattanooga neurologist Dr. Matthew Kodsi, a member of the forum’s expert panel, noted that the neurologists in the Chattanooga area cannot be the only ones serving the needs of people with Alzheimer’s or other dementias.

Caregiver Fifi Ginsberg, whose husband had to retire in his 50s because of early onset Alzheimer’s, said the isolation her family has felt has been wrenching. Friends don’t know how to help, so they avoid contact, she said.

“We’ve kind of been turned away by everybody,” she said.

Financial strife also was a recurring theme at the forum, as was the need for adult day-care services — and transportation to those services — in rural Tennessee.

Forum attendee Andrea Erwin, whose husband has early onset Alzheimer’s, spoke of society’s inattention to people who get the disease relatively early in life and to their caregivers.

When diagnosed, her husband was 57 years old, “a brilliant man who became, to me, another person,” she said. “You hear about my grandma and my great uncle (who have Alzheimer’s). It’s so totally different when they’re young.”

In addition to the pain of dealing with the loss of a spouse as compared to an aging parent, caregivers also struggle with the lack of activities for younger people with the disease, Mrs. Erwin said.

“I can’t picture my husband sitting around a table in an adult daycare center with a bunch of 80-year-olds,” she said. “I’m sorry. That’s not the place where I want my husband to be, and there’s nothing (else) out there. And so, I’m with him 24-7, because I love him. For better, for worse.”

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