Adjusting to Alzheimer's

Yong Suk White doesn't drive anymore.

 

Two incidents last year forced her to stop. She accidentally drove in the wrong lane on Wrightsboro Road. Then she drove to the end of the neighborhood, couldn't go on and couldn't turn around.

She had been diagnosed with Alzheimer's disease in 2007, when she was 65. Alzheimer's is a progressive, degenerative disease that affects brain function.

Now, her husband, Ralph, is her caregiver at their home in Grovetown.

They sold her car and registered with the Safe Return program, a precaution against wandering. Six of 10 people with Alzheimer's will wander and become lost, the Alzheimer's Association says.

Elizabeth Bert, an 85-year-old Augusta woman, was found dead July 5 after wandering from a personal care home three days prior.

To protect wanderers, Kathy Tuckey, the regional program and services director of the Alzheimer's Association office in Augusta, said the Safe Return/ Medic Alert bracelet lists information such as medications, caregiver contact, home address and local law enforcement. Registration is through the Alzheimer's Association.

When a loved one is lost, a caregiver can call an 800 number that generates alerts that are faxed to law enforcement.

Project Lifesaver, in which a person with Alzheimer's wears a device that can be tracked with radar, is another way to protect a patient. Locally, the program is available only in Columbia and Aiken counties. Other GPS tracking devices are available, but many are cost-prohibitive to financially strapped families, Mrs. Tuckey said.

"There is a misconception that wandering only happens in late-stage Alzheimer's, but it can also occur in early to moderate stages as well.

"We're talking about deadly risks here," she said.

Early diagnosis is helpful to address risks and prepare for the future. Family roles will change. The child takes on the parent's role, and a spouse's role will evolve because of the disease, Mrs. Tuckey said.

Mr. White, the spouse and caregiver, first took over cooking responsibilities when Mrs. White forgot how. She has problems remembering what groceries to buy and how to perform certain household chores.

It's a gradual adjustment, he said, based on what she can do.

The plan is to take care of her in the home until the end.

"That might not be possible," Mr. White said.

They arranged for power of attorney and a living will; their daughter has access to their bank account, just in case.

Martinez resident Karen Agrelius has been a caregiver in different capacities since her father was diagnosed with Alzheimer's six years ago.

She spent a lot of time flying out to California, where her parents, John and Velma Anderson, live, dealing with doctors, bills and insurance companies on the phone. She called the Alzheimer's Association in Augusta to get information.

"You have to be their advocate," she said.

Eventually, her parents came to live with her, and she became the 24/7 caregiver. Her mother was also in poor health, having suffered a stroke.

Wandering was the biggest fear, Ms. Agrelius said.

Until you're going through the disease, you can't know how it is, Ms. Agrelius said.

"I wasn't prepared for the decisions I was going to have to make."

She would have to override her father's decisions, such as taking away his keys.

"It affects your family dynamic," she said.

Being a caregiver for her parents got to be too much. Her parents moved to an assisted living facility. They were unhappy, and after six months, they moved back to their home with a hired caregiver. The family recently decided to call in hospice.

Mrs. Tuckey often tells caregivers to remove "guilt" from their vocabulary, a word that indicates "us doing something purposely wrong."

She replaces it with "regret": for the disease.

Personal care homes and other facilities are available for families for whom in-home care by a relative is impractical, or impossible.

Elmcroft of Martinez has a special care unit for Alzheimer's patients, said Becky Waller, the resident director. The doors are secured with pass codes and alarms to prevent wandering. They have long hallways and a secured outside area with a fence and circular walkway for residents who feel the need to roam.

The staff meet with the family of a patient on a quarterly basis to discuss assessments of their behavior and any changes they've seen.

"There are some behaviors the families don't see," she said.

There is no cure for the disease. The Alzheimer's Association estimates 5.3 million Americans have the disease, but more are affected by it.

Emotionally, families experience not only guilt, but also grief, Ms. Agrelius said.

"They're not who they used to be," she said.

The stigma of the disease adds to the heartbreak.

"No one wants to believe you have Alzheimer's until you're so far into it," she said.

Reach Sarah Day Owen at (706) 823-3223 or sarah.owen@augustachronicle.com.

WANDERING BEHAVIOR IN ALZHEIMER'S PATIENTS

Here are some of the warning signs:

- Pacing

- Saying repeatedly they need to visit a certain family member or friend

- Looking for an exit

- Lack of constructive activity or boredom

- Too much going on in the environment, such as crowds

PREVENT WANDERING IN A CARE FACILITY:

- Secure the building; use alarms or code-required doors

- Check in periodically with facility caregivers for a care plan

- Check for at least two staff members at all times, so if one is helping a resident, the other can provide oversight for the rest

- Ask about staff training and education on dementia and Alzheimer's

PREVENT WANDERING IN THE HOME:

- Caregivers must sleep, so a bedside mat with an alarm during the night is useful

- Put alarms on doors

- Disguise doors with stop signs or pictures or place a black mat in front of a door

Source: Kathy Tuckey, Alzheimer's Association regional director

MANY COPE WELL WITH NEWS OF HIGH RISK

ATLANTA --- People who learn through genetic testing that they have a higher than average risk for Alzheimer's disease are able to handle the bad news pretty well, results from the first major study of this suggest.

The findings aren't enough evidence for doctors to urge more people to get genetic testing, said lead author, Dr. Robert Green. But they challenge assumptions that people will be devastated by a positive test result and misread it as certain proof they're doomed to Alzheimer's.

"Our participants were able to understand the risk and manage it," said Dr. Green, a researcher at the Boston University School of Medicine.

For many who learned they were not at increased risk, testing was a great relief.

The study is being published today in the New England Journal of Medicine.

-- Associated Press