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'Dementia A-Z' offers help for families and caregivers

Jeff Bobo • Mar 16, 2017 at 12:19 PM

ROGERSVILLE — When Russ Williamson's wife Carter was diagnosed with Frontotemporal Dementia at the age of 54, neither he nor she knew what they were in store for.

Unfortunately at the time there weren't many resources in Hawkins County he could reach to for help or information.

Williamson, who lives in the Mooresburg comunity of Hawkins County, had to learn through experience over the course of Carter's 10 year illness.

June 15 will be the two year anniversary of Carter's death. It's still a difficult subject for Williamson to talk about.

But, he's hoping that the experience and knowledge he gained throughout his wife's illness might benefit someone else in Hawkins County who is about to go down the same path.

Williamson is an advocate for Alzheimer's Tennessee Inc. - a non-profit organization dedicated to coordinating support groups, educating family and professional caregivers, and advocating for Alzheimer's and dementia research.

Alzheimer's Tennessee is hosting a meeting Friday called "Dementia A-Z" beginning at noon at Signature Lifestyles retirement community, 1341 E. Main Street in Rogersville.

The 90 minute program is intended for family and care-givers of Alzheimer's or dementia patients, or people who believe their loved one may be suffering undiagnosed Alzheimer's or dementia.

Williamson told the Times-News Wednesday that the most important thing a person can take away from Friday's program is awareness.

"Knowing what's going to happen," he said. "Knowing that there are over 70 different dementia diseases out there. Alzheimer's is number one, but knowing their are different kinds of dementia that affect different parts of the brain, so people can understand what's going on."

He added, "I have a friend in Western Tennessee whose wife was diagnosed with the same disease as my wife, but she was like 2.5 years behind my wife. We would talk two or three times a year and I would give him an idea of what was going on. That made it easier for him because he knew what to expect. When my wife was diagnosed, no one in the area really knew much about it."

What Williamson learned over time was that Frontotemporal Dementia is a very fast moving, aggressive dementia. While some Alzheimer's patients may live 20-25 years, Frontotemporal Dementia is faster, and the average life expectancy is 10 years.

"I waited 10 years for Carter to pass away, but when it came down to the time, it was hard," Williamson said. "At the end she couldn't swallow any more and she just stopped eating. And then eventually her body forgot how to breath."

The hardest part of caring for an Alheimer's/demetia patient is the day-to-day routine, which becomes more difficult as the illness progresses.

"You basically have to be with them all the time," he said. "As her dementia got progressively worse I had to hire some live-in caregivers. She couldn't eat. She couldn't feed herself. She couldn't talk. Toward the end she wasn't able to walk, so she was in a wheelchair. We had to put her in Depends toward the end because she couldn't control her bowels."

He added, "What I found talking to a lot of people, guys are not always well suited to be caregivers. We don't have that instinct. Guys have got to learn how to become caregivers, and learn not to be ashamed of taking care of their mother, or their aunt, or their wife."

Tracey Kendall is Northeast Tennessee Regional Director of Alzheimer's Tennessee.

She told the Times-News Wednesday that attending Friday's meeting in Rogersville will give Alzheimer's/dementia family and care-givers access to free resources they can rely on for information 24-hours per day, seven days per week.

"This is a perfect first step in beginning the journey of dementia," Kendall said. "They will receive hands-on usable information. They will leave knowing they have the name and phone number of an organization they can call 24/7 and not feel alone or isolated, or that they're only one going through the most bizarre thing that has ever happened to them. Chances are we have spoken to someone that week who has gone through the exact same thing."

She added, "They will walk away with education, and hands on helpful information that can be used in our day-to-day care-giving."

Alzheimer's Tennessee also offers free one-on-one care consultations, which can be done at the care-giver's home.

"I received a phone call the day before yesterday from a a man who said, 'We have no idea what we're doing'," Kendall said. "He literally said, 'My wife is losing her mind'. So, I went to their house the next day. We are a very hands on organization, if that's what the family wants."

"Challenges that we may not be aware of, that require education and pre-planning can be made easier by being prepared," she added. "My grandmother had 'senility' - what we now know to be Alzheimer’s disease, so I know that things will not be perfect. No one can plan 100 percent for what is possibly coming down the road. But, education and support are key.”

Williamson said another key message is that dementia is nothing to be ashamed of or hide.

"It's common," he said. "If you live long enough you're going to have dementia. Your brain cells are going to deteriorate. Some of us can fortunately escape it in our normal life spans. Other people, such as in the case of my wife, she was 54 when she was diagnosed with it, and she lasted 10 years."

Free lunch will be served during Friday's event. Kendall asks anyone planning on attending to RSVP if possible for meal planning purposes by calling her at (423) 330-4532.                                           

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