“If you look fat, he’ll say you’re fat.”
Cousins Jodie Finney and Alicia Christopher know all too well the challenges of going out in public, especially when accompanying someone with frontal lobe dementia, like Christopher’s father, known as Poppy.
Trips to restaurants or the grocery store could quickly become a minefield of potentially embarrassing or offensive interactions with her father, which began to deteriorate.
“If you have tattoos all over your body, he’s going to say, ‘Why would you ever do that? No filter, so it becomes a bit difficult to get it out in public.
Finney was already dealing with a similar scenario after his mother was diagnosed with Alzheimer’s in 2017, and the two found themselves struggling to make sense of the diagnoses, while sharing their experiences and challenges. In his desire to find a solution, Christopher began proactively communicating with restaurant servers, grocery clerks and others, once again proving the old adage that necessity is the mother of invention.
“She was writing these cards saying, ‘My dad has dementia, please bear with me. I’ll give you a good tip,’ all that stuff,” she said. “And that changed the whole course of the interaction. Everyone, once they knew the situation, they were able to be a lot more kind and compassionate. It made lunch so much more enjoyable, not just for Alicia, but for his father.
Inspired by her homemade cards, a new non-profit organization was quickly born. The two launched The Caregiver Club in early 2022 as a way to more directly help others like them.
“It’s not that we obviously don’t help the person with dementia, but we help them by helping their caregivers,” Finney said. “When caregivers feel supported and rested, they return to caregiving and give people with dementia the support they need.
That help comes through three products the group currently sells on its website: the Caregiver Club gift set, which includes 20 preprinted cards (standard business card size), an adjustable purple amethyst and gold-plated bead bracelet, and a portable magnetic button; a pack of three magnetic buttons; and a recharge of 20 additional cards. All are designed to help reduce what Finney calls “the caregiving stress wheel.”
“We’re here to support them, to validate them, to give them some breathing room, something to tell them, ‘You’re doing a great job,'” she said. “Our cards are really meant to be a resource right now… Going out in public is stressful, but going out in public is normalizing and necessary and it’s good for socializing. We can give you a tool to be in the community and reduce that stress. You can go back to doing things that you and your loved one enjoy doing without feeling alone.
While Finney admits they’re still learning how best to educate caregivers on how best to use the cards and incorporate them into their daily routines, they’ve already heard positive – and rave – feedback. – from current customers.
Mimi Schmid lives in the St. Louis area, and she and her brother take turns taking their father, who lives with Alzheimer’s disease, to lunch a few times a week. She has used the cards in public before.
“I gave one to a hostess as she sat us down in a restaurant. She looked at me for a second, and then it all registered. She communicated it to our server, and there was definitely a new level of patience and understanding.He was friendly and engaged and not at all put off by my dad’s indecisiveness or random comments or statements that sometimes don’t make sense to him.
Finney confirmed that once a carer gets used to keeping the cards handy wherever they go, the results are usually the same.
“The feedback has been outstanding,” she said. “Once they actually use the card and see the interaction between them and your restaurant server, that’s when they get it. They come back to us… and say, “Oh my God, I finally used your card, and it changed my life.”
For the two cousins, they see endless possibilities for the Caregiver Club and are already exploring a number of new initiatives and long-term goals, ranging from dementia-friendly exercise groups and caregiver outings to programs training for restaurants and staff. The group already offers respite packages to natural caregivers and recently organized a social activity for caregivers and companions. Yet they know there will always be a need for simple tools like maps, which are already making a difference in the lives of many caregivers and loved ones with dementia.
“For people with Alzheimer’s disease, anything and everything can be confusing or overwhelming for them,” Schmid said. “So all the little things to make day-to-day experiences more positive and simple are so helpful. It’s a great idea.