Alzheimer's robs families of their future

Teri Shirk is executive director of the Greater Kentucky and Southern Indiana Chapter of the Alzheimer’s Association.
Teri Shirk is executive director of the Greater Kentucky and Southern Indiana Chapter of the Alzheimer’s Association. submitted

Louisville resident Veronica Idle had admired her parents' retirement planning efforts for years and was determined to follow their example in her own life. Both her mom and dad had started working when they were teenagers, and for several decades, had been steadily paying off their mortgage and putting funds away while raising their family of four.

Although their retirement was still a few years away, their tentative plans included trips to Myrtle Beach and perhaps doing some travel abroad.

Then, at age 59, Veronica's dad was diagnosed with Alzheimer's.

The couple's retirement plans would have to change. Looking ahead, they slowly began to realize that, 10 years down the road, instead of watching the sun set on the Atlantic or flying together to Europe, Veronica's mom might be helping her husband get dressed in the morning and hand-feeding him his dinner at night.

As the shock began to wear off, and although the sadness lingered, the couple realized that they had to re-evaluate their financial situation and re-prioritize their responsibilities.

Not only does Alzheimer's gradually steal away its victims' memories, it swallows up huge chunks of their bank accounts. According to an April 2013, RAND Corp. study, Alzheimer's has become the most expensive disease in the United States, costing families and society $157 billion to $215 billion a year. And the biggest expenses aren't drugs or other medical treatments, but the daily in-home and nursing facility services for individuals who gradually lose the ability to care for themselves.

The direct costs of dementia — primarily in-home care, nursing homes and medications for symptoms — are $109 billion a year, according to the RAND study; that compares to $102 billion for heart disease and $77 billion for cancer. The years of informal care provided by family members and other loved ones push the indirect costs even higher.

Alzheimer's is the sixth-leading cause of death in America, and the only one for which there is no treatment to stop or even slow the progression of the disease. An estimated 80,000 Kentuckians have Alzheimer's, and nearly 4 percent of them have early onset Alzheimer's.

Veronica's dad was able to work three more years. Then, for a time, Veronica's mom watched both him and the children who came to her home-based child care center. After several years, however, it was time to close her day care program to focus entirely on her husband.

Nine years after the diagnosis, Veronica helps her mom as much as she can, but she works full time and her parents live an hour and a half away. She says she takes it one day at a time with her dad and mom. And she has served on the Walk to End Alzheimer's planning committee for six years. Veronica says she walks because, "I don't want anyone else to have to experience what my family is going through. There's nothing I can do to take the disease away from my dad, but I can fight for other dads and moms and grandparents."

The Greater Kentucky and Southern Indiana Chapter of the Alzheimer's Association will host 12 fundraising events in September and October. The money goes to research toward a cure, as well as local training and support services for families facing Alzheimer's.

Please join your neighbors, community members and the hundreds of other walkers at the Lexington Walk to End Alzheimer's on Sunday, Sept. 29, at Fifth Third Pavilion. To register for the walk or to donate, visit www.alz.org/kyin, or call 1-800-272-3900.