Conn. woman seeks to inspire caregivers
A year ago this month, Lisa and Peter Marshall were set to wed.
The Andover, Conn. couple was already married. However, Peter was diagnosed with early-onset Alzheimer's disease in 2018 and was struggling with memory loss. At this time, Peter was having a hard time remembering his more-than-decade-long marriage to Lisa.
One night while watching TV, Peter surprised Lisa with an idea.
“He pointed at the TV," Lisa remembered, and said, "‘Let's do it.' I said, ‘Do what? What are you talking about?,' ... I looked at the TV and it was [a] couple getting married, and I said, ‘Do you want to get married?' He said, ‘Yeah.' He had this big grin on his face. I said, ‘Are you asking me to marry you?' He nodded and he grinned and said, ‘Yes.'"
"When the person you love so deeply asks you twice and chooses you twice, it is remarkable,” Lisa said in a previous interview.
Their vow renewal in April 2021 went viral, getting coverage from a number of national outlets such as the Washington Post, CNN and People.
However, in a matter of months, Peter's health declined rapidly.
Lisa said the last couple of steps in his battle with Alzheimer's were “horrific” for her as she watched him lose the ability to self-function. Suddenly, activities such as eating and showering became difficult for Peter.
According to John Hopkins medicine, Alzheimer's disease is the most common form of dementia. Early-onset Alzheimer's disease mostly affects individuals between their 30s and 60s, and comprises roughly 10 percent of all Alzheimer's-related cases.
“It was a very, very rapid decline. He flew through the stages [of Alzheimer's],” Lisa said. “He went from being very present the day of the vow renewal, and within eight months, he was gone. It was just tragically quick.”
Peter passed away at home, surrounded by his family, on Dec. 26, 2021. He was 56.
Now, four months after his passing, Lisa is writing a book in hopes of helping others on their journey with Alzheimer's. She'll also be honored next month for her active role in the community with an award from the Connecticut Chapter of the Alzheimer's Association.
'Find joy. No regrets.'
Lisa said it was incredibly hard at first following Peter's passing, but allowing herself to go through the grieving process has been instrumental.
“At first it was terrible, I lost 15 pounds immediately. I couldn't even chew. The physical pain of grief; I just wasn't expecting it,” Lisa said. “You have to honor where you are in the grieving process. Whether it's anger or you feel lost or you're just so devastated. You have to recognize the emotions and go through them because you can't go around them.”
“I still cry everyday. I still miss him terribly and ask him often, ‘What should I do in this situation?' I'm moving through the grief as I know I need to,” she added.
Since losing Peter, Lisa said she has been able to slowly start doing things that she says she has “neglected.” Some of those activities include spending time with friends and family, going on trips and focusing on her physical health.
“Now, I feel a little bit lighter [and] a little bit freer. I'm doing some things for myself and getting to know myself again. Getting acquainted if you will,” Lisa said.
Part of the grieving process can be surmised in a quote written throughout Lisa's blog “Oh Hello Alzheimer's” and tattooed on her arm: “Find Joy. No Regrets.”
For Lisa, the quote is about finding joy in the moments that you shared with your loved ones while knowing that you provided the very best for them.
“When you're in the throes of caring for someone with Alzheimer's, it may be difficult to find joy because you're consumed by the disease. You're consumed by the negativity of all the things that you're losing. It was hopeful for me to find and focus on the things that Peter could still do,” Lisa said. “My goal, the day after Peter's death, was to feel as though I had no regrets and that I gave him a beautiful life, and I do feel that.”
Helping other caregivers
Following the success of the blog, Lisa said she is writing a book that she hopes to have on shelves by the end of this year. In the book, Lisa said she goes into her relationship with Peter and offers a number of tips to help caregivers aiding those with dementia-related illnesses.
Lisa said the book is a “love story from when we met all the way until his death,” but also delves into taboo topics that aren't easily accessible for caregivers such as intimacy with a partner with Alzheimer's.
The “Oh Hello Alzheimer's” blog is still continuing too, despite what Lisa says is her and Peter's journey being over. The blog, which had been used to keep the public up-to-date on Peter and Lisa, is “taking on a different flavor” and has become a tool to help those affected by Alzheimer's.
“I felt it was sort of fizzling out. Peter and my journey is over, and the blog was all about our journey,” Lisa said. “I've struggled to come up with things to talk about but whenever I talk about what I'm doing now and how I'm doing now. The outpouring of support is surprising because caregivers are so hungry for hope on the other side. I didn't realize that was going to happen.”
Lisa hosts monthly virtual Zoom sessions through her blog that offer a space for those affected by Alzheimer's to voice their stories and share advice for others who may be going through the same experience.
“It was just so shocking how many people were connected through the blog because of that vow renewal and how many people are affected by Alzheimer's and other related dementias,” Lisa said. “It's just insane.”
Outside of her writing, Lisa has joined a coalition started by the Department of Health that looks at gaps in supporting families dealing with Alzheimer's and other dementia-related illnesses as well as creating awareness for related topics such as brain health, early detection, caregiving and family support. Lisa is currently a co-chair on the caregiver and family support arm of the project, which is comprised of caregivers, public officials and medical professionals.
On May 13, Lisa will be honored at the Connecticut Chapter of the Alzheimer's Association's Celebrating Hope fundraising gala for her active work in the Alzheimer's community. She will be given the 'Resilience and Hope award.'
“I'm just so humbled. It's so sweet," Lisa said. “It's such an honor to be honored. I love that it's celebrating hope.”
“What's amazing about Lisa is in the midst of grief and healing, she still helps other caregivers who are on the dementia journey. Lisa was the top fundraiser in our state last year for our Alzheimer's Association Walk to End Alzheimer's, she still blogs on 'Oh Hello Alzheimer's' and she is now involved in Advocacy at our chapter," said Ginny Hanbridge, Executive Director of the Alzheimer's Association's Connecticut Chapter. "For all these reasons and more we are pleased to honor her with the ‘Resilience and Hope' award at our Celebrating Hope benefit."