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Eileen's story

Eileen's story

April 5, 2024

For Acute Myeloid Leukemia World Awareness Day, Eileen shares her experience of caring for her daughter when she was diagnosed with acute myeloid leukemia.

What impact did caring for someone with AML have on your well-being?

Nothing can ever prepare you for being with your 24-year-old daughter and being told that she has leukemia. My daughter insisted that I did not leave her, always greatly reassured by my physical presence, so that’s where I stayed. There was my husband, her older brother, and her long-term boyfriend to explain everything to and support. Inside, I had a constant sense of panic, I felt helpless. As a parent you can usually make everything ok, this was one time I could not. I became exhausted physically and emotionally, lost weight, and started having panic attacks; I found it difficult to concentrate. This all takes its toll and I felt broken. I quickly realized that, if I did not pause, reflect, and take care of myself, I would be of no use to anyone. My daughter often shared with us and the team that she felt great reassurance and comfort, just by being with her and explaining everything in a way she understood. The team was very supportive of my presence, I did feel great concern I would get in the way; however, the team reassured me and acknowledged the benefit of my presence. This helped me to ground myself, acknowledge it was ok to feel what I was feeling and step forward as a stronger family.

How did you take care of yourself physically and emotionally and how did it benefit you?

I am naturally a calm, reflective person and was exhausted maintaining that persona whilst by my daughter's side. After pausing as a family and being honest about our feelings, we stepped forward, and supported each other emotionally and with everyday life. Whilst my daughter was an in-patient, I went for walks every day. I went home every afternoon for a few hours. I recognized that it was important for both of us to have time to ourselves. My daughter was fearful at first; however, I was firm and this became an important part of the rhythm of the day, which was essential for my self care. Then, when she later came home for periods, it was easy to get outside—we all benefited from this. I ensured we were all eating our usual healthy balanced diet. Talking to staff was always so helpful, the team consistently took time to check on us. Having a few close friends who were always out there helped hugely and supported me.Witnessing the difference being with my daughter was making to her was the greatest benefit.

Where did you go for further information, support, and practical advice, and what would you suggest for a new caregiver?

Initially, all information came from the team. They took time to carefully explain diagnosis and treatment—which had to start immediately—and explained outcomes. I was extremely overwhelming for my daughter, for all of us. Within hours I was able to explore all the information, research and so on. Carefully, I explained everything to my daughter and close family. Close friends became a huge source of support. Our GP checked in regularly too and visited whilst she was an in-patient. Blood Cancer UK have a wealth of information, alongside other charities.

For a new caregiver, never hesitate to ask questions, there are no silly questions. Embrace the support and guidance offered, as many caregivers do not have a network around them. Through charities, there are opportunities to contact other caregivers on your terms, which can help so much. There are lots of networks for caregivers, providing advice on balancing family life, work, and caring. Importantly, recognize the importance of self-care, it is okay and essential to take a step back at times.

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