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.