A family shares Alzheimer’s on social media

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Ever since they met in the fifth grade, Bob Pettit said his wife has 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 began with a video their son Joshua Pettit posted around Thanksgiving of 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.

“Alright, we got that settled,” Betty said to her reflection, placing a gentle hand on the mirror. “Now, I’m going to get a good, nice sleep.”

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

The Pettits have captured the attention of audiences around the world, many of whom send encouraging messages, cards and even gifts to the family they say is revealing so much about an often misunderstood and isolating disease — as well as the love and levity that can still exist within it.

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

“It was just such a beautiful, pure moment,” Josh Pettit said. “People relate. They have a grandmother, a parent, you know, somebody that they knew that struggles with this disease. … My mom reminded them a lot of the people that they loved or lost.”

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

“We were just being silly when we started, but I didn’t realize that we were shining a light on a condition that a lot of people perhaps did not know a lot about,” he said.

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

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

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

“We honestly 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’re not always patient and things don’t go well.

“She really was all about always taking care of everybody,” Josh added. “People comment how well we take care of her. But she always she spent many, many years taking care of us.”

Bob and Betty have moved in with Josh in North Carolina as her health began to decline. Her husband and son hope to have her in the home with them for as long as it’s physically possible. And even though Bob was resistant, they found someone to come in sometimes to help them care for Betty.

What have they learned about caretaking? “I guess just, you know, engaging with the person, being there, trying to live in their moment and just go with it and, you know, enjoy those moments,” Josh said.

For families who have a loved one living with the disease, Beth Kallmyer, vice president of care and support at the Alzheimer’s Association, recommended finding support, getting educated and getting connected with other families who are going through the same thing. That could include “watching a TikTok video or attending a support group or an education program,” she said.

Alzheimer’s disease can be especially 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 being caused by a disease like Alzheimer’s,” she said.

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

“If you are seeing something different that’s changed in terms of their behavior, in terms of their memory, in terms of how they can manage day to day things — then it’s time to talk to the doctor,” Kallmyer said.

But a loved one may or may not have awareness that something is going on with their cognitive abilities, so suggesting a trip to the doctor may be a conversation that needs forethought, she said.

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

“One of the things that we know is that the more engaged people are, they just tend to do better,” she said. “If you have somebody sitting there watching TV all day, they’re going to be irritated.”

That can mean utilizing the time carrying out your daily care tasks, like feeding and bathing, as a chance to talk and engage with one another, or it can mean leveraging the things they love to do and incorporating these activities in a way they are able to 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 caregivers get support for themselves early, as feelings of being overwhelmed can creep up. Caregivers can call the Alzheimer’s Association’s help line 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 get pretty isolated.”