• Kitty Edwards

Building Community


I thrive in community.


However, when I am caregiving it can be hard to make time, or find the energy, to participate in one.


I learned to prioritize being in community with others when I took my father to a Parkinson’s dance class that his physical therapist recommended to “get his rhythm back.” He loved to dance throughout his life and even as he turned 60, he took up tap dancing. By then in his 80s, compromised by Parkinson’s, he needed to build strength and coordination.

While he happily danced, I sat with other caregivers watching their loved ones kick up their heels. I gravitated to two other women who were caring for their husbands. We connected as we shared stories, so when the dance classes ended, we continued our conversations by visiting over afternoon tea.

These conversations were expansive. We shared our challenges with the medical system, the difficulties of filing insurance claims, practical techniques to prevent falls, and hilarious moments when we knew we were simply ridiculous as caregivers. We also shared inspirations we received from our ancestors in dreams and morning meditations.

This small caregiving community of three supported me in my caregiving journey with my father until his death three years later.

This experience taught me so much about the importance of building community. Now I start collecting folks to create one as soon as I am thrust into a caregiving situation.


Last year I stepped in as my good friend Valerie’s medical proxy after she had been hospitalized for three months with congestive heart failure. I wanted to build a community for her, so I immediately began to write down her visitors’ names. I also put a signup sheet by her door for those who wished to leave their names and contact information as well.

After a couple of weeks, I had the names of 18 friends and relatives who wanted to be informed of changes in Valerie’s health. When she declined quickly on a Friday evening, it wasn’t possible to get professional help in to cover her care over the weekend. I sent out an email to her community asking for volunteers to sit with her in shifts. In a very short time, I was able to cover the entire weekend with sitters.


She died that Sunday evening with both her best friend and her sister-in-law by her side.


She died in community.


Calling in the Ancestors Ritual

Calling on your ancestors is a wonderful resource for you as a caregiver. They have much wisdom to share.


Tips for Finding or Building a Caregiving Community

Caregiving without community can be isolating whether you live in an urban, suburban, or rural area.


Participating in a caregiving community gives you access to companionship, support, and other caregivers, as you navigate the daily stress, struggles, joys, and sometimes chaos, of caregiving.


Below are some suggestions for finding or creating online and local communities.


Existing Online Communities


Online communities are convenient because you can jump online at any time of the day or night to share your story, or simply hear from others.


There are many caregiving communities that already exist on Facebook. Some of my favorites are:

These groups are safe. They are managed by other caregivers.


Locating In-person Communities


If you are looking for local groups in your community, reach out to organizations that work with local seniors. They are in contact with family caregivers and may be able to recommend a caregiver support group.


You can also search online using “Caregiving Support Groups” or “Caregiving Community Groups” for in-person communities near you.


If you are caring for a veteran, you may want to contact the VA Caregiver Support Line at 1-855-260-3274, or check out their website to find information about local support groups for VA Caregivers.


Building Your Own Community


If you want to create a local in-person support group, reach out to other known caregivers, or post a flyer on local community boards to meet some. Set up a schedule to meet regularly through a shared interest like walking, knitting or drinking coffee.


And don’t forget to share your ancestor stories.


If you want to create a new Facebook Group, post your interest in creating a caregiving group on your Facebook page and ask your friends to share it with their friends. Then check out How to Create a Facebook Group.



Resources

Caregiver Support Groups


Lots of Helping Hands Community


Resources for Rural Caregivers

How to Communicate with Your Ancestors






© 2020 Conscious Caregiving. A presentation of The Living & Dying Consciously Project