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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  • Samcmahon1

    Bob Oaks continues to mis pronounce this and it’s making me crazy! I think many people make this mistake, please help correct and educate people, not confuse them.

    • JP

      In all fairness, Alzheimer’s disease is named after Alois Alzheimer, a German neurologist.  The German pronunciation of “z” is “ts”, which is different from the English pronunciation of “z.”  I’m with Bob on this one.

    • South

      I’m not really worked up about it, but I must note with amusement that it’s also NPR’s fault that I thought people who do not pick up on social cues had the added misfortune of  being diagnosed with “Assburgers Syndrome”.

      Ah, the joys of radio. :)

  • Samcmahon1

    One amazing thing I’ve noticed with many people with Alzheimer’s is that even after they can’t communicate they can remember music from their childhood and young adult years. They actually recall words of the songs and hum tunes. It’s very sweet.

  • Anonymous

    Who sings “My Sweetheart’s The Man In The Moon” at the end of the piece? 

    • Lisa Tobin

      It’s a group called The Happy Harts. The album is Banjo On My Knee. The song is available on iTunes! 

      • Anonymous

        Thank you Lisa.

  • Kathy Burnes

    I heard the Radio Boston story about a man with Alzheimer’s who sings with the Tremble Clef choral group for people with Parkinson’s disease that Jewish Family & Children’s Service (JF&CS) runs in the community. I’ve also been following the Fade to Darkness stories, several of which have highlighted the role that music plays in people’s lives. I am someone for whom singing is central to my life. I’m involved with the JF&CS arts based programming for people and their families dealing with chronic disease. Your recent series confirms that JF&CS plans to expand its singing and dancing programs will be key to helping people find joy while living with and managing chronic disease.

  • Erik Jarvi

    I was touched by their story … I’d say they’re doing a great job dealing with this present situation … I too would like to know the history and info, of that sweet song, “My Sweetheart’s The Man In the Moon” …. Erik 

  • Fayerweather

    Theresa, I have no idea why you did not become a mother–you would have made an excellent one–but maybe it’s more important, given your place in the family, that you make such a wonderfully warm, caring, resiliant, and humorous daughter and, really, an inspiration to us all.  Thank you. 

  • Clareish

    I heard this story as I was driving home from work yesterday and I found myself in tears. Mary Agnes is adorable, and Theresa is an inspiration. Theresa, your love and dedication demonstrate the best of what human beings are capable of. I am also struck how you took a cold, superficial technology–Twitter–and turned it into a tool for profound human connection, between your mother and the outside world, but also between you and your mother, and between you and the world. Everyone wins! That includes those of us who hear or read your words. Thank you so much.

  • jerry

    for those who correct the spelling. this is a happy and and sad story who cares how its spell right or wrong we all no what they mean take your ideas some where else who cares.

  • Cathy Tuckey

    what a wonderful Daughter.  I have been taking care of my Mom at home for the past seven years. I have gone through many stages of Alzheimer’s D. with her.  I have brought music into tmom’s life.  This has been rewarding for her.  She has been in the last stages for the past few years.

  • Dsmallen

    Theresa, what a wonderful job you are doing with your Mother!  I am married and have a teenage daughter, but I visited my Mom every day for 2-1/2 years after moving her from Chicago to Dallas, 
    and all I can say is I wouldn’t trade that time with her for anything! God Bless you, and God Bless your Mom Mary!  Your Mom sounded exactly like my Mom Ruth when she said “I Love You!”

  • EstelaG

    I love that Mary Agnes has a voice on Twitter!  I just became her 2000th follower tonight!  Theresa may you be blessed tenfold for honoring your mother in this way! 

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