Claire Joins a Support Group - Step 8
By Abby Nathanson, Director of Support Groups
“It was amazing to talk to other caregivers in the Family Caregiver Workshop,” Claire said to the Helpline specialist. “George’s disease came on so slowly, I didn’t realize how lonely and overwhelming it had gotten for me.” She had called the Helpline, looking for information about support groups. She had gotten a taste of what it was like to connect with other people who understood what she was going through in the Family Caregiver Workshop, and she was looking for a way to keep that going.
Like many caregivers, her early experiences with caregiving focused heavily on getting information and education about what was happening, and preparing herself for what would come next. While George was able to manage a lot of his own needs, she was still able to relate to him, at least sometimes, in familiar ways. As his disease progressed, and she had to take over more of his care needs, she realized that, while substantial, it wasn’t just the loss of time and energy in taking care of him that was draining her. It was also the loss of her ability to connect to her husband and to enjoy the retirement they thought they would have. Those losses were harder to wrap her head around, because her husband was still present, physically.
When Claire called the Helpline, she spoke with a Helpline Specialist who talked to her about how support groups work, and what she might expect if she joined one. The specialist explained that the support groups are ongoing and focus on the emotional experience of caregiving, and that members make a commitment to attend regularly and to support each other. Claire also learned that each leader meets with prospective members to get to know them and make sure that the group is the best way to meet their needs. The specialist reviewed her availability with Claire, and Claire selected a time and day that worked best with her other responsibilities. Right after that, she received the contact information for the leader of that particular support group.
Claire hesitated to call the support group leader. She wasn’t sure what the conversation would be like and was intimidated about the idea of joining a group where everyone already knew each other, and she would be expected to share her struggles. She was worried about feeling burdened by the experiences of the other caregivers, or not being able to relate to what they were saying. What if she had it easy? What if no one else had the same crazy thoughts that ran through her head? What if they thought she was a terrible, unloving wife for being so frustrated with George and sometimes wishing she didn’t have to do this anymore?
Eventually, Claire called Mary, a long-time volunteer support group leader, who immediately put Claire at ease with her warmth and interest. Mary asked Claire questions about her relationship and her family, what caregiving has been like, and what Claire hoped to get out of a group. She talked to Claire about the other caregivers in the group and the kinds of things they discussed. Claire felt understood, and some relief at not having to pretend like it wasn’t as difficult as it actually was, the way she did sometimes with family and friends.
Claire joined the group a week later. She was nervous walking into the room, but she remembered what Mary had said about trying three sessions to see if the group was a good fit, and focused on getting to know the other caregivers. She talked about her situation, and felt gratified to see other people nodding and to hear their words of validation and support. When others spoke about their struggles, she felt a connection, realizing that despite their different circumstances and backgrounds, the struggles of all caregivers are similar. After a few months, Claire noticed that she was less distressed during the week, knowing that she had a place to talk and be understood. Thanks to the other members, she had a new perspective on the difficulties she was having with her husband. It didn’t make the sadness of her husband’s decline less acute, but the group gave her strength to cope and to work on figuring out what the next chapter of her life would look like.
As her husband declined and his care needs changed, and his ability to relate to her became diminished, Claire was grateful to have the support of the men and women who came together a few times a month to share and provide support. She was also happy to have Mary’s guidance, which kept the group focused and connected.
George and Claire’s Journey continues on the next page...
Please visit out support group page here.