By Yulinda Rahman
I am the mother of three, one of whom has sickle cell. I am the part-time caretaker of a parent with dementia. I am intimately familiar with being a caregiver and I have learned that self-care is an essential component of caring for someone else.
I learned that my youngest daughter has sickle cell from her newborn screening. After the initial shock, I did everything I could to become educated on the disease. Sickle cell is a blood disorder that causes red blood cells to change from their normal pliable circular shape to a sickle shape. These cells are sticky and can become stuck in blood vessels, leading to numerous complications, one being severe pain in the area of the sickling.
When my daughter was seven months old, she spiked a fever of 103 degrees. Anything over 101 degrees is an automatic emergency room visit for her. People with sickle cell have a compromised spleen and cannot effectively fight off bacterial infections. If left untreated it an infection can be fatal. Luckily, my daughter’s illness was just a virus, but it took five days in the hospital to make sure. That was the first of a series of extremely stressful emergency room visits and hospital stays for my daughter.
My daughter had her first pain crisis at the age of three. I was going through a divorce, but I had to put all of that aside and put on the cloak of caretaker. I did everything within my power to make sure that my child was okay and well taken care of. There was a month of around-the-clock pain med distribution, every three hours, 24/7. When my daughter was in the hospital, I spent the nights on that uncomfortable chair that folds out into a “bed,” hearing my child cry out in pain every time she changed positions. The pain, which was centered in her lower back, was so extreme, she was unable walk. I took her to the doctor to see if she would need physical therapy in order to walk again. I was strong for her. And through the intense, non-stop blur, I was somehow meeting the increased needs of my other two children. We got through it.
When things quieted down, I had to shift gears and spend some time with my dad. I had a simple plan: we’d go for a walk. I told him that we were going to go to the park. He said okay. He put on his shoes then asked, “Hey, where are we going?” “We’re going to the park, Dad.” “Okay.” He got his hat. “Hey, where are we going?” “We’re going to the park Dad.” “Okay.” He got his keys. “Hey, where are we going?” “We’re going to the park Dad.” “Okay.”
We left the house. “Hey, where are we going?” “We’re going to the park Dad.” “Okay.” We got to the park and walked for five miles, laughing and joking while enjoying some fresh air. We returned home and I played some old songs and we sang together like we did when I was seven. When it was time to go, I kissed him on his forehead and I got in my car. I sat in the driver’s seat and cried. It’s hard to see a loved one like that, but had to go home and be a parent to my three girls. I sucked it up, I wiped my tears, and I kept it moving.
During this time of caretaking I never stopped to honor myself. I was constantly running on empty, and after months and months and months of neglecting my own needs I hit a wall. I was depleted, there was just nothing left to give, to anyone. I knew I had to do something, so I implemented a few caring-for-the-caretaker ideas. I began taking 30-minute walks on the hospital grounds when my child was comfortable and asleep. I talked to my therapist regularly — having someone to talk to was indispensable. I began dedicating one day a week to myself (as much as possible for a single mom of three children):I didn’t go sit with my dad, I didn’t take too many calls, I didn’t obligate myself to be available to others. I catered to me.
Self-care is an extremely important and often overlooked task for most caregivers. In order to continue to pour care into others we must regularly and consistently replenish our reservoir. We are all worthy of being holistically well.
(Yulinda Rahman, a licensed clinical professional counselor and certified life coach, provides therapy services at Beverly Therapists, including a free monthly support group for parents. Learn more and connect at www.BeverlyTherapists.com.)
