After her husband Bill was diagnosed with GIST in November 2010, Marlene and Bill entered the frightening and confusing world of doctors, hospitals, treatments and uncertainty. Bill’s oncologist recommended they reach out to The Life Raft Group, and in January 2011 Marlene did just that and found the support and encouragement they had been looking for.
LRG: Marlene, what brought you to the LRG?
Marlene: My husband’s GIST diagnosis and surgery was in November 2010, and his oncologist recommended the LRG website.
LRG: What experience led you to start a caregiver support group?
Marlene: The LRG has a family support group that meets in the Chicago area 3 or 4 times a year for the GIST patients, family and friends. As a caregiver, and knowing from conversations with other caregivers, I felt there was a definite need for an LRG Caregiver Support Group where we can be open in our comments, feelings and thoughts about us, the caregiver. The patient has a wonderful support system (doctors, nurses, family, caregivers, support groups), but us caregivers need a support system strictly for ourselves. We need one where we can speak openly and honestly from a caregiver’s perspective.
LRG: What is your hope for other caregivers?
Marlene: It’s amazing to me how quickly we have formed a bond with one another in the group. We know we aren’t alone and we aren’t the only ones having scary thoughts and feelings about our loved ones, ourselves or our family and friends. If a caregiver needs a smile, a hand to hold, someone to listen, a shoulder to lean on, or whatever, whenever, my hope for all is that we will be there for one another. I can’t make the GIST go away, but when I see the men and women talking up a storm, eating cookies and laughing 40 minutes after a meeting was supposed to end, it makes my heart feel good and I hope it makes the hearts of the other caregivers feel the same way.
LRG: What are some examples of how a caregiver can cope more easily in their situation?
Marlene: It’s important to take care of yourself, the caregiver. If you don’t, and something happens to you, who will be there to take over all you do?
Don’t be a martyr or be afraid to ask for help. I’ve seen instances where the caregiver resents that no one helps, yet they never asked for any help. In some cases, when help was offered, the caregiver declined.
Have someone or some place to turn to when you need it, such as a family member, a friend, a therapist, clergy or a support group. Someone or some place to relax, talk if you want, laugh, cry or just sit and listen. The Wellness Place, where our LRG Caregiver Support meetings are held, offers a wonderful variety of free programs for the caregiver: counseling sessions, yoga, massage therapy, exercise and more. Programs are offered both during the day and evening, all with the intent of helping us to cope more easily in our own, individual situation.
The Life Raft Group Caregiver Support Group is held every other month at The Wellness Place in Palatine, Illinois. They give us the space and opportunity to meet for a few hours on a Sunday morning to have the time for ourselves to talk frankly, ask questions, give our perspectives and share our thoughts and feelings with one another.
If you are interested in attending the LRG Caregiver Support Group or starting one of your own, please contact Marlene Nei at marlenenei25@gmail.com or write The Life Raft Group at liferaft@liferaftgroup.org
