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A family shares Alzheimer’s on social media




CNN

Since they met in fifth grade, Bob Pettit said his wife had always been the life of the party, a social butterfly and a caring mother.

Now, in what doctors say are the final stages of her Alzheimer’s disease, Betty Pettit has found new ways to share the love on TikTok.

It all started with a video their son Joshua Pettit posted around Thanksgiving last year. Betty was talking to her reflection in a full-length mirror, asking the woman her name. When Josh told her the woman’s name was Betty, she smiled and said they shared a name.

“Okay, we’ve settled that,” Betty said to her reflection, placing a gentle hand on the mirror. “Now I will sleep well. »

Josh posted the video on social media and by the next afternoon the views were in the millions.

The Pettits have captured the attention of audiences around the world, many of whom send messages of encouragement, cards and even gifts to the family that they say speaks volumes about an often misunderstood and isolating disease – as well as about the love and lightness that may still exist within it.

Alzheimer’s disease is a progressive disease involving parts of the brain that control thought, memory and language, according to the US Centers for Disease Control and Prevention. The disorder can begin with mild memory loss and eventually lead to problems carrying on a conversation and reacting to the environment, the CDC said.

“It was such a beautiful, pure moment,” said Josh Pettit. “People identify themselves. They have a grandmother, a relative, you know, someone they knew who is fighting this disease. … My mother reminded them of many people they loved or lost.

This year, an estimated 6.5 million people age 65 and older are living with Alzheimer’s disease in the United States, according to the Alzheimer’s Association. Despite its prevalence, Josh Pettit said comments on his videos show that many people may not have a clear idea of ​​what Alzheimer’s disease is.

“We were just silly when we started, but I didn’t realize we were highlighting a condition that a lot of people might not be very familiar with,” he said.

Betty Pettit has lived with the disease for about nine years, Josh said.

It started with smaller things like moving things around and repeating itself, said Josh Pettit. But years and many surgeries later, the disease has progressed to the point where Betty needs help with basic things like eating, drinking and showering.

Josh and Bob Pettit learned to place her hands and feet in certain ways so she would more easily remember how to sit in a chair or in a restaurant booth, Josh said.

“Honestly, we didn’t necessarily know if we were doing a good job,” he said, “because you have days where it’s a struggle, where, you know, you try to be patient and you you’re not always patient and things don’t go well.

“She really always wanted to take care of everyone,” Josh added. “People say how much we care for her. But she still spent many, many years taking care of us.

Bob and Betty moved in with Josh in North Carolina as his health began to decline. Her husband and son hope to have her home with them for as long as physically possible. And even though Bob was resilient, they found someone to come over sometimes to help take care of Betty.

What did they learn about babysitting? “I guess just, you know, engaging with the person, being there, trying to live in their moment and just going with it and, you know, enjoying those moments,” Josh said.

For families with a loved one living with the disease, Beth Kallmyer, vice president of care and support at the Alzheimer’s Association, recommended finding support, educating themselves and connecting with other families living with the disease. the same thing. This could include “watching a TikTok video or attending a support group or educational program,” she said.

Alzheimer’s disease can be particularly complicated because people can live with it for up to 20 years, and the level of care increases over time, Kallmyer said. “It can be difficult to understand the difference between normal aging and something that’s caused by a disease like Alzheimer’s disease,” she said.

Memory differences are usually the first thing that comes to mind when people think of the disease, she said. But it affects cognition in all sorts of ways, so the association has a list of signs families should look out for.

“If you see anything different that has changed in terms of behavior, memory, managing daily tasks, it’s time to talk to the doctor,” Kallmyer said.

But a loved one may or may not be aware that something is going on with their cognitive abilities, so suggesting a trip to the doctor can be a conversation that requires foresight, she says.

For those who are diagnosed, Kallmyer said it’s important to stay engaged.

“One of the things we know is that the more engaged people are, the more they tend to get away with it,” she said. “If you have someone sitting there watching TV all day, they’re going to be irritated. »

This may mean using the time spent on your daily care tasks, such as feeding and bathing, as an opportunity to talk and engage with each other, or it may mean taking advantage of the things they enjoy. do and incorporate these activities in a way that they can participate.

Maybe the family’s culinary genius can’t cook on their own anymore, she said, but can they help? Can they sit with you while you cook?

And finally, Kallmyer suggested that caregivers get support for themselves early, because feelings of being overwhelmed can increase. Caregivers can call the Alzheimer’s Association Helpline at 800-272-3900 to ask specific questions or if they just need someone to lend an ear, she said.

“Just knowing you’re not alone is really important and meaningful for caregivers,” Kallmyer said. “They can be quite isolated. »

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