What’s your experience been like as a caregiver?
You know the Maya Angelou poem about the cage? I felt like my adult son who I’ve been caring for was in a cage; and I was in the cage with him. I could fly out, but I don’t fly out because he can’t. And I know it’s crazy, but it pretty much sums it up. And I’ve met people through C-TAC and the Louisville of Care program who made me feel like it was all right to fly out of that cage sometimes, and that’s the best way I can sum it up.
The folks at the Summit last year let me know that and I could care for myself and do things for myself and not feel guilty. And that’s the way I look at it. But it’s all right to fly out, and that really is the way I see it, because I did not before. I don’t think I would’ve considered it.
I never thought about caregiver burnout. I dealt with emotional stress, frustration, and worry, but I didn’t connect it to burnout. It wasn’t until later that I realized the toll caregiving had on me. I started suffering from constant anxiety and noticed how my health had deteriorated — my immune system was weakened, and I felt tired and run-down all the time. It even affected my blood pressure, but I didn’t realize it was linked to caregiving until much later.
At last year’s Summit, the participants committed to helping as part of “Team Sallie”. What’s happened since then?
The Summit changed my outlook. I went there – and was skeptical – but I found people who really cared. People who cared about me and are working every day to change the system. I left with hope.
Before, I struggled to find help, especially with finding a companion service for Walter. The folks at the Summit opened my eyes to resources I didn’t know existed. For example, I was introduced to a place called Transitions, which offers adult daycare, not just for seniors but also for people with brain injuries and strokes like Walter. This was a turning point for both of us. For the first time in four years, I had six hours to myself during the day. It felt amazing, and it reminded me how much I missed having time for myself.
Finally, I left last year’s event with the realization that caregivers to take care of themselves. If you don’t, you won’t be able to take care of your loved one. Caregiving is hard. I used to think burning out was a sign of weakness, but I know now that it’s not. It’s a sign that you’re doing everything you can, and that’s okay. You have to remember that there’s a “you” in there too, and you deserve care just as much as the person you’re looking after.
Thank you, Sallie. We look forward to your session at the upcoming Summit on Tearing Down the Walls of Social Isolation. You’ve inspired us and we hope – you were a teacher before you retired – that you’ll continue to teach us how to better support those facing serious illness.
It’s so wonderful to hear because sometimes I’ve been running, running, running all my life, and then there comes a time when you have to just face it. You got to sit down and tell people to go on ahead of you. I can’t go any further. But you can. So keep up the fight for us.
