Examples of caregiver support circles can be found at neighborhood centers, places of worship and even online. For instance, Lotsa Helping Hands is a website that lets caregivers create and build communities of members in their local areas and post requests for support via an online Help Calendar.
Nancy Monelli, minister of children and families at Phinney Ridge Lutheran Church in Seattle, started a caregiver circle after noticing that many church members were stressed out from taking care of loved ones. Monelli could relate personally to what they were going through.
“I have been a caregiver, and I know how much having people listen to me was helpful to me when my mother was dying, even though I was not her live-in help other than a week here and a week there,” Monelli says. “Also, my husband has had an ongoing medical condition that has caused, over the last 20-some years, acute periods of caregiving.”
At the first circle meeting, Monelli says, “We talked about it being a safe place where they could talk and where we could pray for one another.”
Besides offering moral and spiritual reinforcement, another purpose of the group is to share information about community services and solutions members can use to make their caregiving roles easier. Monelli has referred some group members to a local community center that offers support groups for the spouses of Alzheimer’s patients. A church pastor who used to do hospice work and another who was a caregiver to his wife have been invited to speak to the group.
Pat Youngblood, lead organizer of the Caregiver Circle Project based at the Peaslee Neighborhood Center in Cincinnati, was tapped for that post when she was involved with a local community awareness campaign on retirement security. The Caregiver Circle Project entails a series of short-term group formations, with each circle holding three meetings led by a trained facilitator. In the first meeting, participants discuss their experiences with caregiving. The second meeting focuses on offeringsupport to help with the challenges of family caregiving,such as juggling the needs of the care recipient with those of children at home.
“The third gathering is about resolutions,” says Youngblood, who was the family caregiver for an older brother who suffered several mini strokes. “What can we do to make our own community better?”
During a summit at the end of each annual campaign, all of the participating caregiver circles come together to share information and ideas.
“We bring in some of the local politicians so we can tell them what they can do to make caregiving better,” Youngblood says.
One participant is already seeing concrete results from one of his brainstorms. A University of Cincinnati professor who joined a circle while caring for his wife is now working with a Hamilton County commissioner to start the Navigator Project to help cancer patients and their caregivers find information and assistance. They hope to extend the concept to other health issues as well.
If you’d like to start a formal caregiver support circle in your community, Monelli says it’s important to pick a convenient time for the group to meet. For example, Monelli’s church-based group meets between the 8:30 a.m. and 11:00 a.m. services. The schedule works well for members who have already made arrangements for someone to stay with their loved one while they attend church.
“Finding a time that’s good for people and that doesn’t add another stressor to their life is really helpful,” Monelli says.
For anyone looking to assemble a caregiver circle for practical support from family and friends, an article from Hospice and Palliative Care of Greensboro, North Carolina, offers this advice:
“When asking your family or close friends for help with some simple day-to-day tasks, be upfront about your expectations. If you are hoping to create a schedule and expect them to make a commitment that requires help each week, tell them. Explain you need all the help and support you can get.”
Read more: When the Caregiver Needs Care
Another important need that is greatly assisted by such a support group is that for Parkinson’s Disease. We are near Belvidere, IL which schedules such a support group at the county senior center. The caregivers meet while the care receivers practice an hour of appropriate exercises including synchronous movements. This is sponsored by Boone County, IL.
Another large affiliation is with the Wisconsin Parkinson’s Association based in Milwaukee but which serves all the surrounding states including in Rockford, IL with a daytime group for retired ages plus an evening group for those still working.
We have found these groups encouraging. My wife Catherine has Parkinson’s and I am her caregiver.
I at first felt guilty for even having thoughts that I can feel so much resentment of having all my husbands needs directed soley as MY responsibility, the feelings that I was being blamed for everything that could possibly not be handled to his sister, son’s, ex’wife’s, and other families expectations, it was like you will need to do this, you have to do that, and so on, well after I was able to gather my composure and gain POA over all our medical, financial etc. I have since set limits on who is allowed to even invade the SICU where he’s actually doing a little better ever minute. I feel like NOBODY really cares about his getting well as to what our wills, life insurance, bank accounts, assets are, etc. Talk about complete and utter shock, anger, and hurt, wow and it’s a cycle of these emotions that are occupying my time as they are cruel and malicious from ex-wives, his sister, who are not entitled to ny of our assets, these FAKE CONCERNS are based from pure greed. WHY do people insert themselves or appoint themselves into our lives as our advisers, BEST friends, etc etc is it only for greed, or is it to be busybodies? The call from a local Funeral Home referred to me by a certain person to help me make arrangements to retrieve my Husband from the hospital will never be forgotten, (HE WAS NOT AND IS NOT DEAD) this call almost caused me to go into cardiac arrest, I don’t seem to have anyone I can share with and I can’t leave to go to work or afford outside help. When he fell last week 11/12/2016 both of our lives were turned upside down. This is only the 1st week’s highlights there’s more but I’m just too damn exhausted right now to go on, PLEASE tell me this support group has people like me who need to feel safe and validated to express and seek help here?
Dear criticized and accused,
I read your post compassionately because I know what it’s like. To have all the responsibility, and people on the sidelines who demand time for questions and advice and judgement, without helping. I shut them out. If they want to help, they should help, period. What you need now is to focus on the quality of your relationship with your husband, and cherish your time with him, any ability to communicate and share love, and put them outside a bubble. Life and love – not money and mechanics – is what matters right now. Take heart and spiritualize your time, you won’t regret that.
-Twice bereaved in 2015
Also, make sure you take care of yourself. If you need rest, shut off your phone, lock your door (or you’re probably staying at the hospital – bring some comforts from home, slippers, puzzles, a book, your pillow, cleanser and moisturizer and toothbrush) and prioritize it whenever you can. You need to be in it for the long haul – like having a newborn. No one is entitled to your time; you have choices to make. It’s ok to put off responding, ignore, whatever YOU need to be present for your husband. It is horribly insensitive of people to talk about assets and wills. People should ONLY be asking you how they can help – the ones who bring you lasagnas and don’t make demands understand. Those that don’t get the picture, shut them out and deal with them later. You have my permission!
One more – stay HYDRATED (crying is very dehydrating) and eat. Consider this a sacred time, a time for centering and prayer and presence. Have a notebook and pen on hand at all times. Fortify yourself for encouraging him. Protect that energy. People are not entitled to explanations either, and you can control who has access to the medical information and who can visit. People who are not willing to enter a sanctified space and be helpful don’t have to have rights. And don’t allow distressing conversations that are not for his medical benefit in his space.