Holding onto Mom After Alzheimer’s

Social media — as much as we might hate to be on it — can sincerely provide connection, support, and opportunities to socialize for those who may need it most. That includes caregivers.

A growing number of online platforms are offering us easier ways to ask for help, share important updates on a loved one, or vent to friends and support communities. And it’s working.

A recent study sponsored by the Pew Research Center Internet Project called “Social Media and the Cost of Caring” found that women in particular actually report lower levels of stress when using social media.

Dayna Steele of Houston, Texas, certainly found this to be true. An entrepreneur, author and TV personality, she turned to Facebook several years ago to share the peaks and valleys of her mother’s 3-year battle with Alzheimer’s disease.

“It was cathartic,” Steele told LifeZette of both the Facebook page and the resulting book, “Surviving Alzheimer’s with Friends, Facebook, and a Really Big Glass of Wine.”

“I started posting when my mom was diagnosed, and this community and I went all the way through together, until her death, three years later. I began posting things because I didn’t want to say them out loud. I was thinking, ‘Is there something wrong with me?’ Certain things would just make me laugh — a lot of dark humor went along with my mom’s disease.”

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Posting the lighter moments helped Steele and they resonated with others, too, who began posting as well. Steele said her mom, for example, would pester her constantly with the sentence, “Where are we going?”

“She asked me that over and over again!” said Steele. “Finally I realized it was payback from all the years of my saying to her, ‘Are we there yet?’”

Her mother, Fran Nicholson, succumbed to the disease in October 2015, in the private Alzheimer’s home where she lived, near Steele’s home. Working on the book helped Steele process her grief over her mother’s passing. “We narrowed down all the Facebook posts to what was funny, insightful, and helpful, for the book,” said Steele.

One stage of her mom’s illness even reminded a friend of Steele’s of something familiar.

“I was telling my friend about my mom’s never-ending updates to me by phone: ‘I’m going to play Bingo now,’ ‘I’m going to walk now,’ ‘I’m going to watch TV’ — and my friend paused, laughed and said, ‘It’s like a Twitter feed.'”

Steele laughed at the memory. “I realized it was just like a Twitter feed — random tidbits of information from my mom all the time, about everything.”

Steele shared every part of her journey with her mom online, even the end of that journey.

“I had been out of town and I came back, and immediately went to see her,” said Steele. “She sat with me, and put her head on my shoulder, and held my hand to her heart. Then she gently pushed me away, very gently. I said, ‘Okay, so I guess I’ll see you tomorrow then,’ and she raised her eyebrows at me, as if to say, ‘What, are you kidding me?’”

Her mother died the next day, around 4 a.m.

“My son went with me to see her after she passed — we had about a half hour with her. He is 16 now, and although death — seeing a body — doesn’t bother me so much, I was worried for him to see his grandmother that way,” she said. “But he was so loving, so kind. He took her hand and kissed her cheek,” she reflected.

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What does she miss now about her mom?

Instead of answering that, Steele offered what has returned. “I’m getting my mom back — the person I so missed the first year-and-a-half of her illness — her laugh, her smile. I think she always wanted to be famous. And although this isn’t the way she would have chosen, now, in a way, with the book, she is getting that.”

Steele now speaks to others about her experiences and has been named chief caring expert by Caring.com, a health and wellness website.

In the second half of her book she shares the resources she wished she had as she dealt with Alzheimer’s. “Everything — from the fact that Social Security doesn’t accept a power of attorney, to things caregivers really need — it’s in there.”

There is a caveat to Pew Research’s social media findings. Their research also suggests that heavy users of social media, notably women, can experience greater stress as they become aware of stressful events in the lives of friends and family. Perhaps that’s where the really big glass of wine comes in, as Steele’s book title suggests.

“I loved it when I heard that three glasses of champagne a week can prevent dementia,” Steele noted with a laugh. “Sounds good to me!”