Every
night, Lisa Marshall makes sure Peter Marshall brushes his teeth and
puts his pajamas on. She pulls back the covers for him to climb into
bed, and sometimes he will enthusiastically jump around before he
settles quietly into the sheets. Before leaving the room, she makes sure
to give Peter lots of kisses and tell him how much she loves him. Peter
is not Lisa Marshall's son — he is her husband.
In 2018
at age 53, Peter was diagnosed with early onset Alzheimer's, and Lisa,
his wife and full-time caretaker, has been by his side since.
Lisa and Peter Marshall at their home in Connecticut.Courtesy Lisa Marshall
Before
Peter's diagnosis, Marshall admitted she knew something was wrong with
her husband for a couple of years, but chalked it up to getting older.
On
Valentine's Day 2017, at the insistence of both his wife and friends,
Peter agreed to see a doctor. Marshall said she vividly remembers the
day Peter was diagnosed, April 30, 2018, after a year's worth of
cognitive testing and appointments.
"The neurologist was
sitting on the exam table leaning forward with his elbows on his knees,"
Marshall told TODAY Health. "He was delivering his words so
deliberately and slowly, so I could understand them. He said it was
early onset Alzheimer's and I was like 'Cool, let’s go get some lunch.' I
would not acknowledge it. I would not accept it."
Lisa and Peter Marshall with their children at home in Connecticut. Courtesy Lisa Marshall
With
no close friends or family who shared a similar diagnosis, Marshall
admitted she was naive to the way the disease would impact their lives.
"I
didn’t know anything about Alzheimer's," she said. "It was something
you get when you’re 80. I was ignorant about it. I didn’t know anything
at all. I knew cognitively he was slipping quick, but I was in denial."
While
Alzheimer's is more common in people older than 65, younger- or
early-onset Alzheimer's can happen to people in their 40s and 50s. According to the Alzheimer's Association,
it is unclear how many people in the U.S. suffer from early-onset
Alzheimer's and the cause is unknown, though for some it may be genetic.
Memory problems that interfere with day-to-day life are the first signs
of Alzheimer's, followed by or in conjunction with a decline in
cognition, like struggling to find words, develop a plan or work with
numbers.
Peter was 53 years old when he was diagnosed with early-onset Alzheimer's.Courtesy Lisa Marshall
As
Peter's disease progressed, and quickly, Marshall was determined to
help other caregivers facing the same diagnosis feel less alone. She
began documenting their journey on a Facebook page titled, "Oh Hello Alzheimer's." To date, the page has over 2,000 followers.
"I
think that in the beginning it was me just really screaming, 'Look at
this! Look at what’s happening to us!'" Marshall said. "I was horrified.
It was a desperate cry. It’s been a support for me and a bunch of other
people who get it and are going through the same thing."
Over the past three years, Marshall has shared the
devastating situations she has faced as both Peter's wife and his
full-time caregiver — everything from creating a bulletin board of
familiar faces to installing a bidet to assist with Peter's inability to
use the bathroom alone.
Early on, as Peter participated
at a clinical trial, Marshall posted an anecdote about reminding him to
take his medicine: Peter opened up a container of Parmesan cheese,
poured some in his hand, and ate it like pills.
While her anecdotes can be both humorous and heartbreaking, Marshall's goal has always been honesty.
"I
just want to be open and honest and tell people what we’re
experiencing, because you might too," she said. "I’d rather know it and
be prepared. That’s my whole mission, too. There’s no platform you can
go to find it out."
In a more recent post, Marshall detailed Peter's inability to recognize her as his wife.
As Alzheimer's has slowly taken over Peter's brain, the
couple no longer sleeps together due to the seizures Peter suffers in
his sleep and Marshall has taken on more of a parental role.
"The
thing I miss the most is intelligent conversation or dialog with him,"
she told TODAY, adding that he no longer understands playful banter. "He
has no idea what these words mean."
While she is
surrounded by support from friends, family and their five children,
Marshall said the weight of the situation is never far.
"I
remember him putting on a gray (tank top) over his T-shirt when we were
on vacation, and he just totally didn’t think anything about it, or he
has two different shoes on and he doesn’t think about it," she shared.
"It’s a smack in the face — oh, we have Alzheimer's. You’re so
constantly adapting that it doesn’t even phase you, until it does."
In the meantime, Marshall is savoring every moment she has left with the love of her life.
"We do a lot of crying here," she said. "Caregivers like me grieve every single day."
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