Alzheimer’s Awareness Month: Difficulties families face when battling the disease

BATON ROUGE, La. (WAFB) - At the age of 40, doctors say people start becoming forgetful but Garylyn Gill never expected her husband, Robert, to forget where he lives.

“He would get lost driving and I think he knew there was a few times that it scared him,” said Gill. “He really didn’t know what was going on at the time but he knew there was something.”

Robert Gill was diagnosed with early-onset Alzheimer’s at 65. From that point on, the Gill family changed. Garylyn was no longer just a loving wife. She became a caregiver for her husband.

“You have to remember that this is a grown man. This is an adult. He’s not five and you can’t answer him like a five-year-old. So, it doesn’t matter how many times they ask the same question over and over, you answer,” she added.

Even though she was willing to take care of her husband through thick and thin, there were challenges. She needed extra support to understand this disease.

“If you don’t get information right away, you are just floundering. I mean, you don’t understand things that are happening and some of it can be prevented at first,” she explained.

More than six million Americans have Alzheimer’s. It is a brain disease that affects memory cognition and it can last eight to 10 years.

Alzheimer’s Services of the Capital Area says costs can quickly get up to $60,000 a year to care for a loved one.

“Alzheimer’s is the most expensive disease in the community,” said Stacey Denham with the Alzheimer’s Association Louisiana Chapter. “The cost of caring for those alone with Alzheimer’s and other dementia is estimated a total over $355 billion in 2021 alone.”

Denham works with multiple families across the state to find adequate care at a reasonable price, which isn’t always easy to do. It doesn’t matter if families are looking for home care or an assisted living facility.

“So, we advocate and we encourage families to investigate in long-term care services, things like home care, assisted living, nursing homes in your area. You have to ask them what type of insurance that you would accept,” added Denham.

The state of Louisiana offers long-term care waiver programs that can help cut the costs. The Alzheimer’s Association Louisiana Chapter encourages families to plan ahead for their finances and treatment care before the disease progresses.

“I think once you are diagnosed with the disease, the biggest thing to do is to educate yourself. Educate yourself as a caregiver and educate yourself as someone with the disease. Put a plan in place and get your support system together,” explained Denham.

Garylyn said she struggled the most with how to prepare herself and her husband as the disease advances. She found her way to the Alzheimer’s Services of the Capital Area in Baton Rouge.

“The information, I mean you walk in there and there is just pamphlets, books, and people that are just there to listen to you. Answer any questions you have,” she noted.

There, she gained a support system while Robert found a sense of normalcy and a chance to socialize, which has proven to benefit Alzheimer’s patients.

“They’re still in there and they still absorb a lot, take it in,” said Barbara Auten, executive director of Alzheimer’s Services in Baton Rouge. “They may not be able to communicate. They may not be able to participate. But both spirituality and love has been proven to transcend the disease.”

Auten added it’s all about using the cognition that they still have. If they don’t use it, they will lose it.

“They can still do so much if we just give them the opportunity and that’s what socialization does. It gives them the opportunity to use what cognition they have. That way, they keep it longer,” explained Auten.

The Alzheimer’s Services of the Capital Area also offers financial literacy classes and other workshops that helped Garylyn and Robert. It serves as a constant reminder to them that this disease does not have to be the end of their lives together. Rather, it’s a chance to cherish every moment from this day forward.

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