By Mahrukh Siddiqui
(This article is made possible with the support of AARP)
At 54-years-old, Kim Moy has been a caregiver for nearly 20 years. First, a caregiver to her elderly parents and her mother who suffered from Alzheimer’s and now to her husband, Shahid, who suffers from myalgic encephalomyelitis. Myalgic encephalomyelitis is a chronic disease that affects the body including the immune, nervous and energy systems and is often called chronic fatigue syndrome.
Around the time that Shahid’s health took a turn for the worse, Moy was caring for her parents, two young children and taking her husband to various doctor’s appointments all while working as a manager at Yahoo.
Moy described this time in her life as a “pressure cooker situation.”
“I had to deal with health insurance,” Moy said. “I had to take care of all the prescriptions and all of these things. It was just a lot.
Moy initially had the idea to create a support group centered around partner caregivers after attending a general caregiver support group and meeting other partner caregivers.
According to Moy, until the general support group she had only met one other spousal caregiver at a hospital waiting room. Speaking to another spousal caregiver was “a powerful connection” and she felt seen and heard.
“There was one person in the group who had just joined as well, who was also a spousal caregiver with two kids the same ages as my kids,” Moy said. “We ended up talking on the phone… just because we had so much to share, and we had so much in common.”
Moy said she approached the lead organizer of the general support group with the idea of creating a spin-off group; a group focused on partners because of the different dynamic with caregivers “when it’s your spouse, partner, or boyfriend or girlfriend.”
Caregiver Wisdom is a community group created by Moy, aimed at connecting people who are caregivers for their significant others and spouses who suffer from myalgic encephalomyelitis and other chronic illnesses, with each other. The monthly support group meetings with Caregiver Wisdom are free to attend but Moy also offers a 12-week paid course “Thrive as a Caregiver.”
Jeff Whitney, who is a spousal caregiver and a caregiver to his daughter said his wife was the person who discovered a group that focused on caregivers to children. That support group pointed him in the direction of Moy’s group, and he started attending the monthly calls.
“She’s built a community where we can share resources and connect with each other and made it, you know, like it’s really hard to just reach out to somebody,” Whitney said.
According to Whitney, guest speakers also attend the meetings to speak about their different expertise, bringing in yoga and even techniques on maintaining intimate connections with partners while being a caregiver.
“You have a little community of people who are going through it. That not only are there for you, but that you can then you are there for,” Whitney said.
In the spousal caregiver support group, Moy said she picks a topic to focus the conversation around for a session and then sends people to breakout rooms on Zoom so that they can connect and share with each other.
According to Moy, at the heart of Caregiver Wisdom is a sense of community; a reminder to caregivers that they are not alone during a time when it might seem like they are.
“While my caregiver support group does focus on partners, it’s actually open to any type of caregiver,” Moy said. “We do focus on this particular community because I feel like that is a resource and support for this particular type of chronic illness and is needed and this population is so underserved.”
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