There has never been any sort of organized support group for families caring for someone in a long-term minimally conscious state. The mainstream brain injury support groups seem to be speaking a totally different language. Families like ours aren’t discussing rehabilitation and efforts to return to school or work- we’re talking about long-term care and severe cognition deficits. It can make families become isolated, feeling completely alone, and thinking there is no one else who understands what their new normal has become. As parents who have been caring for our adult child since 2008, we (Tom and Carol) have looked for a group, or even just one other parent, who could speak the same language of wheelchairs, feeding tubes, dystonia, etc. We at Granite House have started a support group for individuals and families. We are contacting local and statewide organizations to promote awareness about the importance of this kind of support, and act as a resource to those interested.
Through referrals by the Minnesota Brain Injury Alliance, we now have a small support group that meets in St. Paul at the Marjorie McNeely Conservatory at Como, for coffee and a time to share, to offer support, and bond in our own way. Families are invited to join our group by email or in person. We know you are out there. Together we can help other families adjust, cope, and find the courage to bring a child or spouse home from an institution. There are tips to help you do the best for your family member while they are living in a traditional group home. We can even help you set up a CaringBridge website to keep your friends and family informed. An organized group of families can lead the way to make changes in caregiving standards that will help these special people have the highest quality of life possible. Once Granite House is open, we will have handouts, literature, and visiting speakers from the Minnesota Brain Injury Alliance to get us started on our educational outreach and support group programs.
If you are a parent, spouse, sibling, partner, or even a close friend of someone with a severe and permanent brain injury, please join our mailing list and our support network. Read the information about the minimally conscious state on our website, and help spread the word about this group of people. There may be more than we know. We feel like we may have much in common with the families of children with other lifelong conditions who started support groups decades ago to spread awareness and make changes. Think of the wonderful programs and acceptance that has come out of these efforts, and help us now to do what is right for these young people.
For more information about our support network and meetings, email
Carol Insley at: email@example.com
A family-focused long-term care residence
Three care-giving moms attended the
Camrose Hill fundraiser in October 2016.
Our first support group meeting at the beautiful Marjorie McNeely Conservatory in St. Paul. Join us!