Wendy, transplant recipient, and her husband, Clark
Going into transplant, both you and your caregiver probably shifted to full-blown patient/caregiver roles. But once you return home after transplant, it can be hard to determine when and how to get back to when you weren’t a “patient” and a “caregiver.” Wendy and her husband Clark, offer a few tips to help you make the transition smoother.
Talk it out
When you come home from transplant, it’s normal to feel a mix of emotions. Clark remembers, “All of a sudden you’re turned loose into the world and reality really hits.” Talking through these emotions with your caregiver can help you connect and cope with them together. Wendy says, “Talk with your caregiver about how you’re doing, how they’re doing, and how things are changing. Try to have these conversations when you’re both calm.”
If you’re not sure how to bring this up, here are a few ideas to help you start the conversation:
- “We’ve been through a lot recently. Can we talk about how our relationship has changed?”
- “I know you’ve taken on a lot as my caregiver. As I start to feel better, I’m hoping you’ll have less caregiving to do. Can we talk about this transition?”
- “I feel like our roles have changed through transplant and I’m looking forward to not feeling like a patient. How do you feel?”
Take it slow
When you’re ready to get back to your pre-transplant routine, it may be helpful to talk with your caregiver about setting boundaries and how your expectations for one another are changing. Your caregiver may feel hesitant because they’re still protective of you.
Clark remembers, “As Wendy got better, she wanted to jump back into her normal life and go grocery shopping, working and going out with friends. We talked about it like ‘OK, if you’re going grocery shopping, let’s go on a day where there are fewer people there.’ Or, ‘If you want to go back to work, that’s great. But let’s not go back full-time. Let’s start with part-time, and we’ll talk with your co-workers about what to do when they feel sick.’”
Ask for help
If you don’t feel comfortable talking about this with your caregiver, ask someone to sit in and help with the conversation. It could be a counselor, someone from your church, or a trusted friend. “There may also be books or other resources out there that can help you,” Clark says, “but don’t be afraid to ask for help.”
One of our BMT Social Workers, Hailey Hassel, MSW, LGSW, offers some advice. “You don’t have to be perfect at communicating”, she says. “The goal isn’t to have the perfect words or the right answers, but to talk and figure it out together. It’s OK to make mistakes along the way.” You can contact Hailey or one of our other BMT Social Workers to talk about life after transplant, including:
- Transitioning away from being a “patient”
- Setting boundaries and expectations with your caregiver
- Changes in your relationships
Connect with us!
- CALL or TEXT: 1 (888) 999-6743
Monday through Friday, 8 a.m.–5 p.m. Central Time - EMAIL: patientinfo@nmdp.org
You can also access these other resources through the Be The Match Patient Support Center:
- Join a group of peers in a telephone support group or on Facebook.
- Connect with someone like Wendy or Clark who’s been through it.