Right at this moment thousands of Mississippi families are dealing with a vicious, heartbreaking and deadly disease. Alzheimer's and other kinds of dementia kill more people in this country than breast and prostate cancer combined.
3 On Your Side Investigates how families are coping not only with the disease, but the emotional, legal and financial issues that also come with Dealing with Dementia.
Alice Skelton is the primary caregiver for her mother. The first signs of a problem came 10 years ago when her mother took what she calls a little road trip.
"She was 15 minutes from her home and she ended up in Tchula, Mississippi."
Shortly after that came the diagnosis.
"She was initially diagnosed with mild cognitive impairment, which basically, I liked that, I was very proud of that term because my mother didn't have dementia or anything like that."
Hearing the word Alzheimer's was a blow.
"If my mother had cancer I'd have people with casseroles at my house. But there's something about that word and they also need to know that its terminal."
Skelton has one sister who lives out of state. She says when you have siblings it is important that everyone is involved. Planning is essential especially when looking at finances.
"If you have Alzheimer's and you decide that a memory care unit is where your loved one needs to be, they're very expensive and you will eventually run out of money."
Medicaid was not a possibility for her mother.
Skelton explained, "Medicaid has a five year look back, which was stunning to me. We're at a five year look back because people were getting smarter by putting what resources they had into trusts. “
Sue Ann Meng is a social worker with the Memory Impairment and Neurodegenerative Dementia Center or MIND Center at UMMC, the University of Mississippi Medical Center in Jackson. She suggests families first try to get an early diagnosis, that helps with planning.
If you wait too late and the disease progresses, legal documents can be contested and many times won't stand up in court. She also suggests establishing trusts, power of attorney, especially a healthcare power of attorney and hire an elder attorney.
"This person may be fine today but what if tomorrow they can't write a check."
Meng also says having a plan protects not only the patient but also the family.
"They go in the bank and take $5,000 out when they meant to take $5."
Long term insurance plans are also an option. If families decide on a Memory Care Unit the costs can be staggering.
Meng said, "3, 5, $6,000 dollars a month. If you've got to have a 24 hour sitter even higher than that."
She also offers this advice to families.
"Don't keep it a secret. It does not need to be a secret."
Skelton says it is also important to remember in addition to all the planning, the stress, sleep deprivation and worry, the prognosis is the same. In the end you are losing the person you love.
"It is a daily grieving because you'll know that she could do something yesterday that she can't do today. The lessons that you get to learn as a caregiver is how to be present now."
Mary Kim Smith the Executive Director of the Alzheimer's Association Mississippi says there are around 40 caregiver support groups throughout the state and many more are needed.
"There are 206,000 caregivers in our state dealing with someone that has Alzheimer's and most of those are family caregivers."
You can get more information from the Alzheimer's Association Mississippi by visiting their website.
You can also reach them by phone at 800-272-3900.
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