“The waters are deep and wide and murky,” shares Barrington resident Justine Gregoire on the challenges of caregiving. Her father was diagnosed with Alzheimer’s disease in 2018 and passed away this spring. Justine faced unique challenges as an Alzheimer’s caregiver. She found valuable support through the Alzheimer’s Association, and today she fights for a cure by fundraising with The Longest Day.
Justine became a caregiver to her father in 2020, two years after his initial diagnosis. She began caregiving fulltime during a global pandemic. “My father and mother moved in with us during the pandemic so we could help care for my dad with my mom,” Justine shares. “It was one of the hardest times in my life.”
After progressing through the disease, Justine’s father passed away on Mother’s Day in 2022. She remained committed to raising awareness for Alzheimer’s disease even after her caregiving responsibilities ended. The Longest Day, a signature event from the Alzheimer’s Association, let her get involved on her own terms.
Named after the day with the most light — the summer solstice — The Longest Day asks participants to use their creativity and passion to join the fight for a cure. Justine and her husband Joel chose to host a golf outing on the summer solstice in 2022. However, her fundraising began months before on the darkest day of the year.
On December 21, 2021, the winter solstice, Justine shared an unfiltered look at a night in the life of a dementia caregiver on her social media pages. “People have no idea how hard the nights are. I thought telling that story on the longest night of the year was appropriate,” Justine shares. “I have never shared anything so personal on social media before.”
Her candor was met with an outpouring of support. Justine expected to raise $500 when she posted her story to LinkedIn and Facebook. She raised over $4,000 in the span of a few days.
“It was amazing,” says Justine. Between her winter solstice fundraiser and her summer golf outing, she raised $12,000 for Alzheimer’s care, support and research. She hopes that her honest story motivates others to join the fight for a cure.
“If you know or love anyone who is or will be 65, then the chance of them getting Alzheimer’s is [high],” Justine says. She’s referring to the fact that 1 in 3 seniors dies with Alzheimer’s or another dementia. “Those are high odds and there are zero effective treatments.
“[The disease is] not just simply forgetting something you said or did or a person’s name,” she shares. “Someone with Alzheimer’s forgets everything about who they are: what they liked to eat, how to sign their name, how to fix things.” As the disease progresses, intensive, around-the-clock care is usually required for a person living with the disease. Late-stage challenges include trouble walking, showering and breathing. “It is devastating to watch, especially knowing there is no hope, no respite,” Justine confides. The burden of caregiving can be emotional, physical, and financial.
“It is not peaceful,” Justine says of the disease. “I don’t want one more person to watch their loved one die like that. And it hurts me to know it’s still happening every day.”
There is no guidebook for caregiving; but the Alzheimer’s Association provides resources for every step in the journey. Justine found the free, 24/7 Helpline (800.272.3900) particularly useful in choosing the appropriate care options for her dad and tackling the financial challenges of caregiving. “I used the helpline and received the best information and help I received from anyone during the course of the disease,” she says.
Every call to the 24/7 Helpline reaches a master’s-level clinician offering confidential support to people living with dementia, caregivers, families and the public. “You need to speak to someone who knows what they are talking about,” assures Justine.
Individuals looking to fight the darkness of Alzheimer’s disease are invited to register for The Longest Day. While some participants choose to do their fundraiser around the summer solstice, winter is an ideal time to start fundraising. Consider hosting a hot chocolate stand to raise funds for the Alzheimer’s Association; host a sledding competition with a donation entry fee; or share holiday pies in exchange for a donation to your fundraising page.