A letter to those who will be caring for someone who needs help
I wish I'd known how frustrating — and fulfilling — being a caregiver would be
Dear Future Caregiver,
As I look back on the transformative journey I’ve embraced as a caregiver to a person with sickle cell disease — its ups and downs, joys and frustrations, and profound sense of purpose — I want to impart some invaluable insights I dearly wish I had known before stepping into the role.
First and foremost, I wish someone had told me just how frustrating and exhausting caregiving can be. There have been moments when I’ve felt like I was running on empty, drained both physically and emotionally. I wish someone would have told me about the immense sacrifice it would require — of time, of money, and even of a part of yourself.
I also wish someone had conveyed to me the deep sense of fulfillment and gratification that comes from knowing your efforts are making a difference.
Becoming a caregiver is a full-time role and responsibility, even when it’s to someone who isn’t a loved one. There are no days off, and it can be scary. Whenever you feel overwhelmed, however, remember the person who depends on your care. That’s a powerful motivator to reset your thinking.
I now understand the importance of staying organized and preparing for the worst.
My journey began with caring for my little cousin. I had a medical background, which helped to some extent, but what I needed most was to be prepared for the emotional challenges that come with caregiving.
There were nights when I longed for a good night’s sleep after a long shift at work, only to be awakened because my cousin was in crisis. I’d find myself tending to her, sponging away the fever, administering pain medication, and, on occasion, rushing her to the emergency room. My house became a mini-medical supply store, and my first-aid kit overflowed with IV fluids and supplies. It was overwhelming.
You’ll learn that planning is key. You can’t do things on a whim when you’re responsible for someone’s well-being. Think ahead, consider who can step in when you’re unavailable, and communicate with teachers and other guardians to make sure your loved one’s needs are met.
You’ll find that the emotional toll of caregiving is very real. Resentment may creep in when you feel your life is put on hold.
It’s crucial to shift your perspective on the role, however. See this new responsibility as a journey, an opportunity to excel and make a positive impact. Maintain a positive attitude, especially when faced with the challenges of a progressive illness. Be the cheerleader your loved one needs, encouraging them to fight and stay strong. Remember, your strength will inspire them to keep going.
Seek support from others as you support your charge. Join support groups, reach out to friends, and don’t be afraid to ask for help. The caregiving community is a powerful one, filled with people who understand your struggles and can offer valuable advice.
Above all, don’t forget to take care of yourself. Find time to relax and enjoy life’s little pleasures. You can give your best only when you’re at your best.
As a caregiver, you are embarking on a challenging but deeply meaningful journey. Know that your efforts are making a difference, and you’re not alone. Embrace the role with love, compassion, and the knowledge that you are having a positive impact on someone’s life.
With care and support,
A fellow caregiver
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
About the Author
Comments
John
Yes, yes, yes! My son will soon celebrate his 24th birthday. My wife is an Adult Internal Medicine Physician. Her dad was a Pediatrician. We lived in Pennsylvania, where our son was cared for by Dr. Kwaku Oheny Frempong. My wife’s mom was a retired nurse. I was the only lay person in the equation. I felt blessed to have that little guy because I felt God trusted us (me) to care for the life of His gift to us. I cherished our baby & felt a depth of love for my wife, his mother, that I didn’t have before, though I loved her very much. The baby increased my capacity to love her.
Caring for & raising him was the hardest thing to do that I ever loved. He was such an incredible little boy. We moved to the MD, D.C. area to get support from family. I became disabled & my wife needed to find a good paying job, which she never would have in York, PA. My wife’s sister had a condo, in Maryland (MD) that she needed tenants for. Things just seemed to be happening in ways we could not have planned. Something beyond our power was afoot in our lives.
I had been in the military for 4 years & worked as a flight attendant for 29 years. Service wasn’t foreign to me. Staying up all night wasn’t new to me. Working 12-24 hours wasn’t foreign to me. Cleaning up vomit or whatever else wasn’t new to me. Being a father was absolutely new to me. The only reason I wasn’t completely terrified was because of my supporting cast. They made me feel like “we can do this!”.
I was so happy to have a child (I was 48 years old), I didn’t really think about the challenges ahead. More than once, I had given up on finding a wife & having a family. The prime time for that in my life seemed to have passed. But, my prayers were answered & I found a wonderful wife & we had a baby boy. Neither my wife nor I felt we wouldn’t be able to care for him & give him the best life possible. We were both just so happy.
Our first challenge came right after his second birthday, first Christmas he was able to play with the toys he received & enjoy the decorations & tree. Had a high fever & spent a week in the hospital. This was a routine we went through for the next 22 years. At first, I didn’t want to retire due to disability, but it turned out to be the best thing possible. At least one of us didn’t have the responsibilities, restrictions & demands that employment requires. I didn’t have to ask for sick time, tell my boss I wasn’t coming in or I’d be late for work. But, even with that, it was extremely challenging raising a child with Sickle Cell Anemia. Slept in so many hospital rooms & visited so many hospitals that spending nights at a Ronald McDonald house felt like being in the Ritz.
Learned to have food we could pack to eat @ the hospital. Kept a cooler & drinks at the ready. Kept clothes packed & ready for him & me. Kept the gas tank full & the battery charged. Made friends with every medical professional caring for our child & brought donuts, muffins, pizza, etc. for staff members. It’s been a long journey, but it was so rewarding. His younger brother took him to the Sickle Cell Treatment Center at John’s Hopkins the last time he had a pain crisis that required a hospital stay.
Just celebrated my 72nd birthday & when I leave the planet, I will feel like my life had purpose. I will feel validated & fulfilled. We are still a very integral part of our son’s life, but he is in control of his life. It’s beautiful to watch & rewarding to know that he is quite capable of handling his life, with the right support. It’s been more challenging than I could have imagined. But, it’s made our marriage & family relationships stronger. Our love for each other is genuine & authentic. We each are stronger because of our feelings for each other.
Sylvia Amuta
Your journey is incredibly inspiring. The strength, love, and resilience you and your family have shown while caring for your son with Sickle Cell Anemia are truly remarkable. It's evident that the challenges you faced only strengthened your bonds and deepened your love for each other. Your story is a testament to the power of love, support, and unwavering determination in the face of adversity. Thank you for sharing your heartwarming experience, and I wish you and your family continued strength and happiness in the years ahead.