You can still catch a few glimpses of the old Molly Daley, from before the dementia diagnosis two years ago, when she laughs for no reason, when she hugs her son and tells him she loves him, or when she pretends to box with her youngest grandson, wearing pink gloves and a padded helmet.
That’s the Molly who enjoyed drinking a cold
beer with her dinner, going on road trips, and lending a hand to her
friends and neighbors.
But that Molly is now elusive, more often
replaced by a vacant gaze hiding the suffering as the disease slowly
takes over her brain.
"That look of confusion, where she’s trying to
process what’s going on, it’s just like a blank stare and that gets
worse over time," her son, Joey Daley, told NBC News. "It’s like, just a
little bit, dementia has taken a little bit more of her away."
Such is the agonizing nature of what's called "Lewy body dementia," which Joey Daley began chronicling in January through a painfully honest YouTube series centered on his mom.
Molly, 66, was diagnosed in 2015, and Daley
found himself yearning for more information from other caregivers like
him about what to expect as the disease worsened.
When he found resources lacking, he decided to
put the spotlight on Molly and their own family’s struggle — reaching
the hearts of millions who have watched the videos around the world in
“Before these videos, you couldn’t explain it to people,” Daley
said, adding that he couldn’t watch his mother deteriorating without
giving the ordeal some purpose.
Now, after the ongoing series sprouted a grassroots network of caregivers and supporters called Molly’s Movement, Daley, 46, said the videos have been the most rewarding thing he’s ever done.
"I had no idea it would touch that many people," he said.
Dementia with Lewy bodies is the second most
common form of the disease in older adults after Alzheimer’s, affecting
more than 1.4 million Americans. Abnormal clumps of a protein building
up in brain cells cause the disease, which is characterized by a gradual
loss of cognitive functions.
Patients experience visual hallucinations,
REM disorders that cause them to physically act out dreams, and tremors
like those in Parkinson’s disease. But unlike Parkinson’s, Lewy body
dementia affects wider swaths of the brain, interfering with a person’s
everyday life and their ability to carry out typical activities or solve
About three years ago, basic tasks like paying bills, driving a car
or taking medication became challenges for Molly, who at the time was
living alone in Columbus, Ohio. Then, after an infection landed her in
the hospital, her children stepped in. She now lives closer to her
family in a nursing home in nearby Dublin, where her son and daughter
visit on alternate days, taking her out for shopping trips, the
occasional pedicure or haircut, and family dinners.
Daley never knows what state of mind his mom
will be in on each visit. Sometimes she’ll welcome him with a smile and
small talk. Then there was the time he watched her using one toothbrush
to brush another, having seemingly forgotten how to brush her teeth. Or
the time she kept asking if the shower was a way out of the room.
But most often, he’ll find her crying,
distraught and shaken up by a bad dream she is convinced actually
occurred in real life, as she struggles to find the words to explain
what she thinks is wrong.
"Dementia’s like an onion. You peel off the layers of the memory on
the outer layers until you get to the core, where you’re just a child
again," Daley said. "It’s suffering to death."
There is currently no way to prevent dementia or
stop its advance. There is no "cure." And the only way to even get a
definite diagnosis is through autopsy after a patient's death.
About one-third of all Medicare beneficiaries
who die in a given year have been diagnosed with Alzheimer’s or another
form of dementia, according to 2014 Medicare claims data analyzed by the Alzheimer’s Association. And data from the Lewy Body Dementia Association suggest that the disease may account for up to 25 percent of cases of dementia.
"[Lewy body dementia] is probably the most
common disease you’ve never heard of," said Dr. James Galvin, an expert
in cognitive health, memory loss, Alzheimer’s disease, Lewy body
dementia, and related disorders.
Galvin said the disease is poorly understood and
under-studied in comparison to Alzheimer’s, which is due in part to the
difficulty in pinning down a diagnosis. A survey from the Lewy Body
Dementia Association shows that on average, it took physicians four
office visits to make the diagnosis. This lack of knowledge can isolate
To help combat that, Daley created a Facebook group
that now has more than 31,000 members, many of whom are caregivers for
people with dementia. They use the platform to share stories, seek
advice and give out words of encouragement.
Periodically, Daley, who is an entrepreneur and
works from home, uses the money earned from Molly’s Movement t-shirt
sales or donations to organize giveaways for caregivers in the group.
The prize is a relaxing night out or, in the case of a 16-year-old girl
caring for her grandmother, a shopping trip.
"[The giveaway] is the type of thing my mom
would do," he said, adding that he gets about 100 messages every day
from people pouring their heart out to him or thanking him for his
Any type of support that reduces the feeling of
isolation is essential, as caregivers can often forego their own needs
when helping dementia patients.
“A caregiver is the invisible patient,” said Dr. Galvin.
But Daley, like many others, shrugs off concern
for his own well-being. As his movement grows, so do the demands on his
time. The married father of three said he will have to do "more work
when everyone’s asleep."
His mother, who was a single parent of two while
working two jobs as he was growing up, is his inspiration. One video at
a time, he is building her legacy.
As his mother’s dementia gets worse, Daley
wonders how much longer he’ll be able to keep recording, especially once
she becomes unable to speak. He acknowledges that it will be a delicate
balance, something he never got to discuss with her before beginning
"I don’t want to stop early," he said. "I want people to understand how bad it gets."
Daley said the most exhausting part is going
over what he recorded at the end of each day, reliving painful moments
like the time she forgot he was her son — an event he thought would come
much later, perhaps at the end.
But for the many heartbreaking moments, there
are still the rare ones when the old Molly shines through, like when she
was asked whether she is proud of her son.
"If there wasn’t a Joey, there wouldn’t be me," she answered.
Full Article & Source:
Battling Dementia: A Mother and Son’s Incredible Journey