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Tweeting Alzheimer’s: Sharing Her Mother’s Voice

BROCKTON, Mass. — There aren’t a lot of people like @maryagneskelley on Twitter.

In the past few weeks, she has sent out tweets ranging from: “I love you!!!! Where am I?” to “I’m dying for some chocolate milk~” to “Hallucinating~*.”

Mary is 82 years old, lives in a nursing facility, and has Alzheimer’s disease.

On a recent visit, Mary couldn’t recall how long she’d been at the facility — “too long,” she said. She was surprised when her daughter, Theresa Mackin, told her she had been there for three years.

Theresa is one of Mary’s three children, the youngest of two daughters and a son. She works full-time as a custom framer in Boston, but pretty much every day she has off she is in Brockton visiting her mom. “I’m not married, I don’t have children, so I have more free time than my brother and sister do, so we spend the whole day together,” Theresa said. “Six, seven, eight hours together.”

On the days when she can’t visit, they talk on the phone five or six times.

“I think that’s where Twitter came in,” Theresa said.

Theresa runs the Twitter account for her mom. The words are Mary’s, but Theresa is the one who types them out, then lets Mary hit the button to send them. They started tweeting about a year ago.

“That particular day, I was feeling very alone and isolated,” Theresa said. “I would come home after spending a day with her and think of all these funny things she would say or sad things she would say and I realized she still had a voice. And so Twitter’s given her a voice.”

On the day we visited, @maryagneskelley had 1,018 followers on Twitter.

“It’s wonderful. To know that somewhere out there, people are thinking of me.”
– Mary Agnes, 82, on Twitter

“Can you imagine?” Mary asked, when her daughter updated her on the number. “I said to Theresa, where are they going to follow me? Somewhere nice, I hope.”

Mary has a base of followers who have developed a relationship with her. Several women regularly send her direct messages and one woman sends her photos of flowers. “It’s very touching,” Theresa said. “I’ve been really moved by her followers.”

In one of her tweets, Mary said: “Me sing~? I couldn’t carry a note in a suitcase~*”

“It’s true,” she said, when reminded of the tweet.

“You have one song you can sing,” Theresa told her. “You know that song you were singing about the man in the moon?”

Together the two sang an old song Mary says her mother taught her from her days in a convent. Mary had no trouble remembering the words.

Mary is still in the earlier stages of Alzheimer’s disease.

“I’m ready to accept the fact that there’s a time where she may not remember me,” Theresa said. “A neurologist said to me once, you may want to get your shield of armor ready. But that doesn’t bother me personally. Even if she doesn’t remember me, I’ll still be coming down here to be with her.”

Theresa said she plans to keep tweeting for her mother until the very end.

“That will be my hardest tweet to send out, when Mary goes straight to heaven. But we’re going to keep tweeting, right?” she asked her mom. “Oh, I hope so,” Mary said. “I’ll get better at it in time.”

Theresa asked Mary if there was anything she wanted to say to all her followers on Twitter.

“Easy does it,” Mary said. “But do it.”

“That might be her tweet for the day,” Theresa laughed. “Yeah, we’ll tweet that later.”

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