Caregiver’s support group finds common ground in shared experiences

“To care for those who once cared for us is one of the highest honours.” — Tia Walker, Author

United Active Living has offered a support group since 2019 for family caregivers who care for individuals living in its two communities. The support group brings together spouses who live in the community, and families who provide support from outside the community.

“While we also support caregivers one-to-one, we identified a need to have a group where caregivers could come together and share their experiences,” said Amy McDonough, United Minds Manager. “The purpose is to reduce the feelings of isolation many caregivers feel, and provide a safe space for participants to express their emotions, ask for advice and connect with each other.”

Support groups educate and provide psychological support. The benefits have been known since the eighties. Studies have shown that “people who receive good support in the presence of stressful and challenging situations have a better adaptation, both physically and psychologically.”

The United group, which meets once a month in each of the two communities, Fish Creek and Garrison Green, is attended by as many as 12 people, which includes spouses and family members.

“We began with providing support to caregivers of residents who are living with dementia, but we have expanded it to include caregivers of residents with other caregiving needs,” said Amy. “The group participants are finding relief in knowing they are not alone. They are on a journey that many others are on, and those experiences can be shared to help others facing the same challenges.”

Amy noted that caregivers often go through the various stages of grief, and the accompanying range of emotions. “Everyone is different. They feel the way they feel and we validate they are in that journey of grief. We recognize their struggles and celebrate their successes. They learn where their strengths and their limitations are.”

Caregivers: better together

Suzanne Presinal is the daughter of Garrison Green resident Alice Dombroski, who is living with dementia. “When the support group was set up, I wanted to be involved. It’s a great way to meet residents and other family members going through their journey. I’m finding the group very helpful because we are all walking on the same path.”

Suzanne finds that having a supportive community is the single biggest benefit from being involved in the group. “I feel like I’m living two lives, mine and my mom’s. I look after her personal needs and I’m there for her as much as possible, to be my mom’s anchor. These caregiver meetings allow me to meet other residents, mostly men, who are caring for their wives and doing the best they can. They too are looking for sounding boards for some of their daily struggles, and I, in turn, feel safe sharing my concerns back. We give tips and advice to each other in a way that is private and respectful.”

Darlene and Pat McCulloch have been at United’s Fish Creek community for three years. Pat has Parkinson’s, and Darlene is attending United’s caregivers support group to learn more about how to support Pat.

“I was going to a support group outside the community but when a group was started at United, I felt it would benefit us both since many of the people we already know are involved,” said Darlene. “It felt more homey. There are more people that I know and see at various times throughout the day.”

A supportive community

Darlene has learned to take time for herself, which is something she has found support for within the group. “Amy has provided us with some great resources to support us, and we can discuss our individual concerns or problems with the group in a confidential manner. We can give each other advice or tips based on our experiences.”

Suzanne has high praise for the United Minds team who regularly engage with Alice and keep Suzanne informed. “They know my mom. The United Minds team has daily conversations with her and they send me weekly updates, and most of all, she appreciates their kindness. She is in a safe place at United.”

“One of the biggest benefits of the group is knowing that we’re not alone,” said Darlene. “There are others whose experiences may be different, but all are caregivers, and that is really helpful. And Amy and others on the United Minds team are there for us should we want some time one-on-one.”

“Knowing you are not alone on this journey is very comforting,” said Suzanne. “There is a lot of emotion involved in caregiving. While there are difficult times, I would say that caregiving has its unforgettable moments that are powerful and profound. The conversations I have with my mom are at times full of laughter and silliness and always meaningful, especially since her dementia is progressing.”

Speak with one of our active living advisors about life in a United community. They can arrange tours of our Garrison Green and Fish Creek communities. If you know a friend or family member who could benefit from living in a United community, send them a link to our website or blog, or arrange a future visit. We are happy to help!