For those of us who work on the Vectra test, we pride ourselves on keeping rheumatoid arthritis (RA) patients at the center of all that we do. Patient-centricity is part of all our thinking and guides many of our decisions. An important part of the patient perspective that isn’t often mentioned is the patient’s primary caregiver. A primary caregiver is a person who plays a critical role in any patient’s support system.
Being a caregiver can be difficult in many ways. It can be physically exhausting, mentally demanding and quite emotional. Often one of the patient’s biggest supporters, the caregiver also faces his or her own needs and challenges, which may not be as visible to those around them.
We recently held a meeting for Vectra’s patient ambassadors in Tampa, FL. At the gathering Patient Ambassador Lori’s husband, Wayne, and Patient Ambassador Stephen’s wife, Candace, both of whom serve as primary caregivers for their spouses, sat down with us and talked about their role as caregivers and how they stay strong to support their partner and loved one.
Wayne: For me, the hardest part is seeing my wife in all that pain knowing there’s nothing I can do other than being supportive. Of course, I can do little things; for example, if she needs something, I can bring her what she needs, but it’s hard to see her suffer physically.
Candace: I’m a planner, so the unpredictability involved with being a caregiver is what’s difficult for me. Even the best-laid plans can be upended because of a flare. My husband has had so many surgeries that I’ve learned to go with the flow. I love interacting with other rheumatoid arthritis patients because it reminds me that the things Steve and I have to work around really are related mostly to the disease. I support him 100 percent.
Q. Are there any unexpected joys in being a caregiver?
Candace: Because of Steve’s RA, I’ve been able to see a part of him I might not have otherwise. He is so involved with his RA communities, and when he does something, he’s in 110 percent. He really cares about people. He listens to them, hears how they feel, checks in on them and has helped people all across the country. Seeing his deep levels of compassion is part of the joy I feel in being a caregiver.
Wayne: For me, the joy of being a caregiver is fulfilling the promise I made to be her life partner. I need her, and she needs me. I’ll be there for her no matter what. Knowing that our commitment is strong and that we are partners for life is what really brings me joy.
Q. Being a caregiver can be exhausting. How do you recharge so that you are strong for your partner?
Wayne: I haven’t quite figured that out yet! Seriously, though, being around the other Patient Ambassadors is a re-charge. It’s great to hear the progress that is being made with this disease. I feel lots of hope for her. The truth is that whenever I’m feeling tired or exhausted, I think about the pain that she often endures, and it puts things in perspective for me.
Candace: I enjoy traveling, so I recharge in that way. If I’m feeling overwhelmed with what’s happening, I try to plan a trip – and to plan it a bit into the future so that I can look forward to it. I recently went to Istanbul, Cyprus, and Italy, and I travel with my daughter or my sisters. On a daily basis, I find time to retreat into a comfy chair in my office. I meditate, read, or take a nap.
Q. How do you continue to have compassion for your spouse?
Candace: I’m a person of faith, and I spend time each morning reading the Bible and praying. I specifically pray that I’ll be kind-hearted. Steve’s personality is such that he likes to have his ducks in a row, and RA can throw a wrench into things. I see that’s hard for him, and I don’t want to pile onto what is already hard for him. However, I married him 25 years ago, and I am in it forever. I love my husband, and I know he loves me. Having a severe disability has to be mentally exhausting for him. Love and compassion go hand-in-hand. You love your spouse unconditionally.
Wayne: I still think of Lori as my girlfriend. I want her to see what I feel: that I love her, that I’m in the fight with her, that when I said I’d be there, I really meant it. We’re on a journey together, and I want to see how it turns out. I’m sticking around for a happy ending and to have as many laughs as we can along the way.
If you care for a patient with RA, we working on the Vectra team applaud what you do and encourage you to find ways to connect with other caregivers. Learn about rheumatoid arthritis through Creaky Joints, the Arthritis Foundation, and the RA Connection. Find out about issues related to caregiving at https://www.caregiving.com. Above all, take care of yourself.