Twitter users explode over photo of mother with young-onset dementia
When mother-of-five Phyllis Feener started fumbling on simple tasks at work in 2012, she put it down to side effects from menopause.
At 52, she was used to unexpected symptoms like hot flashes and forgetfulness, so just tried to work through it.
But this time, it wasn’t coming and going in phases, it was just getting worse, and she was let go from her job in Mount Juliet, Tennessee.
Panicked, she went to her doctor for help.
After a few tests, in early 2013, Phyllis received a verdict she had never expected: she had young-onset dementia.
Five years later, Phyllis is in the final stages of the disease, which is incurable and terminal.
But her family has remained strong, inspiring thousands of people online after her daughter Kelli posted a photo of Phyllis and husband of 34 years Stan cuddling on an armchair.
‘She doesn’t always remember his name but she knows she is safe with him. If that’s not true love, I don’t know what is,’ Kelli wrote.
Moving: Phyllis Feener cuddles her husband of 34 years Stan, who cares for her since being diagnosed with young-onset dementia five years ago
Painful ordeal: Phyllis was let go from work after suffering memory loss. She got tests done and found it wasn’t to do with menopause, it was the beginning of dementia
Phyllis, who has five children, has a type of dementia that particularly affects language
The tweet, posted on April 25, exploded: within a week it was shared 120,000 times, with 622,000 likes and more than 5,000 responses.
Phyllis was diagnosed with a subtype of dementia that particularly affects speech.
Logopenic Variant PPA makes it particularly difficult to find words, meaning sufferers speak slowly and often hesitate.
They usually maintain their memory of what words mean, but it affects their fluency.
It means that, as time goes on, it can make it harder for sufferers to understand sentence structures and fluid speech.
There is no cure for any form of PPA, and while there are some treatments that are thought to slow the progression in certain types of dementia, this is not one of them.
Nonetheless, some patients have seen progress working with speech therapists, so Phyllis’s family got her straight into a program.
‘We have no way of knowing how much time we will have with Phyllis,’ the family wrote last week on the GoFundMe page.
‘It just depends on how quickly her disease progresses. It could be two years, it could be twenty years. Either way, this will be an ongoing journey and we will need help in the years to come.’
Love: Phyllis does not always remember Stan’s name but it is clear she loves him
Fighting: The family are trying to fight against the disease with speech therapy
Family support: Kelli (left), her siblings and her parents are sticking together to fight dementia
According to her speech therapist, there may be a few years left but she urged the family to start looking into care facilities.
‘I don’t know how the next few months and years will be for Phyllis but I’m hopeful that she can maintain where she is for a while,’ the therapist said on the GoFundMe page.
‘I do worry about her future safety because I know some progressions of dementia involve loss of muscle movement. She does a lot of things from muscle memory like feeding herself and walking but I don’t know how long that will last.
‘I’m hoping she has many more years but I think it is important for [the family] to prepare [themselves] for that. I remember [Stan] saying that [he was] looking into long term care facilities and I think that will be so important for the future.
‘I’m greatly impressed at [Stan’s] ability to care for her. I know 24-7 can’t be easy but [he is] doing an excellent job!’
Now, though, their private battle has become a national one after Kelli posted the moving photo of her parents online.
The photo was met with an outpouring of emotional messages from Twitter users, in a movement that drove up funds on the GoFundMe to $21,000 – far eclipsing the $13,000 the family had dreamed of.