Love Yourself First: An Interview With Caregiver/Spouse, Shelfina Wilkins

Love Yourself First This interview is a brief glimpse into the life of a caregiver/spouse, Shelfina Wilkins, as she dealt with the death of her husband who died from complications of sickle cell disease (SCD). She became a certified sickle cell community health worker after the death of her husband and is a staunch advocate for the sickle cell community. How long were you married? For 10 years, but we were together 17–18 years total. When you got together, were you familiar with SCD? I was very much aware of SCD. My godson has it. When you married your husband, were you aware that on average, people with SCD have shortened lifespans? He told me if I married him, he would give me a least a decade [laughing]. I didn’t fall in love with him because he had SCD—he just happened to have SCD. SCD did not define him as a person, it was something extra that was there that we dealt with. Was he relatively healthy when you first got together? He was in and out of the hospital. He was 10 years older than me. They told us when he was 45/46 years old that he had 6 months to live, but he was stubborn and lived another 4 years. But I could tell the difference in his battle with SCD. How did that affect you, knowing that he was not going to be around for probably most of your life? The grief process—what a lot of people don’t understand—the grief process starts before a person dies, especially when you see it and you are dealing with it on a daily basis. I always had to put on a strong front for him. You know, looking back you learn a lot of things, but while you are in the moment of it I was withdrawing. I was getting more anxious because I was trying to deal with all these emotions of him leaving, him not being here and trying to take care of him while he was here, to give him as much comfort as I possibly could—and then also teenage boys and them dealing with the grief of their father passing—but I still had joy in the fact that I had him here. Did SCD affect the family finances? I knew going in. He was on disability, he received a small amount, but it helped. I worked when we first got together—that caused issues because I made more money than him. Did you feel your health deteriorated caring for him? I couldn’t hold a job and help him with his doctor’s appointments. With end stage SCD there are so many doctor’s appointments—it is not just going to your hematologist. It’s nephrologist, urologists, podiatrists—it goes on and on. Trying to keep up with all those different doctors gets overwhelming, especially when that person can’t do it for themselves. Me trying to juggle being a nurse manager, being a wife, being a mother, being a caregiver, and my health declining—because when he was in hospice, I was on disability myself. It was a lot. Did you feel that you neglected yourself? I neglected myself at first, and that was one of the things I had to go to counseling about. The fact that you can’t care for someone else if you pour everything out of yourself. [But] that’s not how caregivers normally are, caregivers are normally very selfless. We take care of everyone else and don’t take care of ourselves, but that’s not good, it’s not healthy. And I can say yes, my health very much declined. Did that add to your stress level? Absolutely! How did you deal with that? Counseling and therapy. Did you go to counseling on your own? I started grief counseling before he passed, but before then I did it for traumas I had been through. Working on me made me a better caregiver. I know your husband had dreadlocks, and that you had to cut them off when he was in hospice, talk about the emotional toll that took on you. I cried like a baby. He cried. I got a lot of flak from family, but I made the best choice for my husband. Did you have family support? No. Just me. When he went on hospice, had you talked with him about end-of-life issues? He fought to the end, he didn’t want to go on hospice. They told him to go on hospice or palliative care a year before he died. He went on 1 month before he passed. He did not want to go on life support or be intubated, we had those discussions. Did you feel guilty when you took time for yourself? Absolutely, I felt like I had to be there every moment, especially when he was in hospice. Is there anything looking back that you would say to your younger self that you would change? Stop trying to push for additional time and cherish the time that you have. Is there anything you would tell other caregivers? Take care of yourself. Take 30 minutes for yourself every day. Any other advice you would like to give caregivers? Love yourself first. If you don’t love yourself, you can’t love anyone else. It may sound selfish to say it, but it’s more selfish to not do so. You are not your best and cannot give the best version of yourself to your warrior.   Yvonne Carroll, RN, JD IASCNAPA Board Member Director Patient Service Hematology St. Jude Children’s Research Hospital Memphis, Tennessee, United States