By Dasha Kiper
Consulting Clinical Supervisor,
When Carol, a young woman caring for a mother with Alzheimer’s, said goodbye to her group, she thanked everyone and then added: “I want you to know, this support group saved my life.”
How can a bi-monthly meeting, where people gather to talk about the hardships of day-to-day caregiving, have such a profound effect? Do the meetings slow down the progress of the disease? Do they fix what is maddening or devastating about it? Of course not. But the group members knew what Carol meant. It was true for them as well.
Like many caregivers, Carol felt overwhelmed by the logistic and emotional demands of the disease. Her strong, capable mother, whom she had always leaned on, had gradually become combative and paranoid, exhibiting mood swings that never ceased to stun her daughter. Dealing with her mother’s decline changed Carol as well. She became anxious, always on edge, snapping at people, especially her mother, which only made her feel worse. Her siblings were not around much, and her friends didn’t really understand what she was going through. She felt completely alone.
As with many caregivers, it did not occur to Carol that she might need support. Only after she joined a group did she realize what had been missing in her life — namely, a consistent level of both emotional support by people who “get it,” who know first-hand what caring for parents or spouses with dementia truly entails.
CaringKind groups are unique. They are not drop-in groups. Members make a firm commitment to be there for each other, and all are invested in each other’s lives. They bear witness to their own pain and to the pain of others. They admit things they might not tell their closest friends, and they provide the understanding and compassion that caregivers do not find at home. Sharing their stories—their concerns, doubts, conflicts, frustrations, fear, and guilt—group members give each other permission to grieve and even to fall apart.
More than anything, support groups are a shield against the loneliness that engulfs most caregivers. A sense of isolation does not just feel bad, it also elevates stress, increases depression, exacerbates chronic health conditions, decreases motivation for self-care, and makes self-regulation and self-control harder to sustain. This is particularly harmful for those caregivers who feel their own lives are unraveling.
When Carol said that the group saved her life, she meant that it provided the emotional support that gave her both the strength to endure and the willingness to have a life away from her mother. For the first time since her mother fell ill, she was able to think of herself not just as a caregiver. With the group’s encouragement, she asked herself what she needed, what was meaningful to her. Being kinder to herself, Carol was better able to be kind to her mom.
For someone taking care of a person with an incurable neuro-degenerative disease, a support group plays an indispensable role. By helping to maintain a quality of life for one person, it assures the well-being of both.