Families Struggle Against the Unknowns of Alzheimer's Across Appalachia
For families struggling with Alzheimer’s in Appalachia, the road can be lonely and long. Alzheimer’s is a brain disease that is the most common cause of dementia in older adults. Patients with the disease can live as long as 20 years after diagnosis.
During that time they become increasingly dependent on loved ones for care -- you might have heard of someone forgetting how to get home or go to the grocery store they’ve been frequenting their entire life. But they also may forget to eat or to take medicines properly, and eventually, memories of loved ones begin to pass too.
“I am a caregiver. You’ve changed from wife to caregiver,” said Carol Ware. “I don’t get hugs. That kills me -- I don’t get hugs. He doesn’t have the emotion he used to, it’s just really hard.” Ware and her daughter Traci Eddy live side by side in homes on a quiet street in Marietta, Ohio. Carol’s husband of 46 years, Traci’s dad, has Alzheimer’s.
Keith Ware first began displaying symptoms of Alzheimer’s 12 years ago in his late 60s. At first he couldn’t remember his youngest grandchild’s name. Then he began to forget where his favorite restaurants were and stopped caring about his personal hygiene.
“I don’t understand Alzheimer’s at all,” said Ware. “One day he seems like he’s fine and the next he can’t even pick up his fork. Part of the time he can and part of the time he can’t.”
Each day, Ware said, she doesn’t know what she’s waking up to.
The incidence of Alzheimer’s is increasing in every state in our nation.
“It takes a lot to care for someone with Alzheimer’s disease,” said Marc Haut, vice chair and director of clinical research at the Rockefeller Neuroscience Institute and a clinical trial team member at West Virginia University. “It is very draining. It is a really hard task and job to do. Because typically you’re caring for somebody who means the most to you in the world and you’re watching them change in front of you. And not only is it physically draining, but it can be emotionally draining seeing that person change in front of you who is no longer becoming that person that you know.”
More than 220,000 Ohioans are living with Alzheimer's, according to the Alzheimer’s Association. It’s the 6th leading cause of death in Ohio, according to the Centers for Disease Control and Prevention. In West Virginia those numbers are 37,000 and 7th leading cause of death. Which, Haut says, may not accurately represent the disease’s impact on the state.
“So that might be a counting problem.”
Haut says that people who live in rural areas have less access to health care and have higher risk factors -- like high blood pressure, obesity, high cholesterol, coronary artery disease --
that cause vascular problems in the brain.
“We know those run very, very high in this state. And those aren’t the cause of Alzheimer’s disease, but when you get those factors combined with the genetic risk it seems to bring it out more.”
Haut’s team at West Virginia University is running a clinical trial to see if ultrasound could be used to address early Alzheimer’s.
But he said it’s hard to treat Alzheimer's when scientists still don’t understand the disease. “It’s a really complex disease, and we don’t know the basic causes and how the mechanisms actually work to produce the symptoms,” he said.
The not-knowing -- and the paucity of societal support -- makes life super difficult for caregivers like Traci Eddy and Carol Ware.
Every day Keith goes to an adult daycare in Marietta, which Ware said is a lifesaver for her. She pays $20 a day for him to go 5 days a week.
“I don’t know if I could keep him at home if he didn’t have that because I would be nuts,” said Ware.
When he comes home, though, Carol said he’s worse than he is at daycare -- sometimes pacing around the house saying he’s got to do something but unsure what.
“And I don’t know why. I don’t know why he’s worse with me than he is with other people. And that’s one thing I’ll never understand -- they say the caregiver gets the blunt end of everything.”
Last year, Keith was put on hospice. The experience was a welcome relief for Ware. She loves her husband deeply, but the extra daily help and the allocation of five days a month of respite hospice meant that she was able to continue to care for her husband AND care for herself.
But Keith didn’t decline quickly enough and legally hospice had to withdraw, so now she’s back to where they were before. When she needs a break, she says she has to pay out of pocket for respite caregivers.
There are some services available in Ohio for respite, but daughter Traci Eddy said her family has been just over the income-asset guideline for the services they’ve sought. She also said even with help from the Alzheimer’s Association, finding available resources is really challenging and it’s possible there are some they haven’t been able to discover. Or maybe not.
The current plan is to keep Keith home as long as possible and hope a spot comes open in a Veterans Administration nursing home before his wife can’t care for him any longer. If one doesn’t, Eddie said Ware will have to spend down their retirement to pay for care. Eventually, when she runs out of funds, Keith will qualify for Medicaid. But she hopes it doesn't come to that.
“The phrase we use a lot is, ‘You can’t take care of so and so unless you take care of yourself,’” said Haut. “That’s really easy for us to say as healthcare providers, and we know it’s really hard for families to be able to do that. Because somebody’s got to be there. Sometimes somebody’s got to be there 24-7. So who is going to go to the store? Who is going to pick up the prescriptions? So having that kind of respite and backup and stuff like that -- particularly if you live a mile off the hard road as some people do in West Virginia -- makes it really challenging.”
In West Virginia, the Bureau for Senior Services runs a program called Family Alzheimer’s In-Home Respite that provides up to 16 hours a week of respite care to families on a sliding fee scale. There are also some federal programs that provide respite. But for people like Eddie and Ware, who spend years of their lives caring for a loved one with Alzheimer’s, programs like this just aren’t enough.
Editor's Note: Clarification 4/17 A previous version of this story said "Ware plans to spend their savings down so Keith qualifies for Medicaid." It now reads "Ware will have to spend down their retirement to pay for care. Eventually, when she runs out of funds, Keith will qualify for Medicaid. But she hopes it doesn't come to that."
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from Marshall Health and Charleston Area Medical Center.