© 2023 MJH Life Sciences™ and CURE - Oncology & Cancer News for Patients & Caregivers. All rights reserved.
As a caregiver, it is crucial that you learn to ask for help.
Although every cancer is different, the reality is that anybody going through cancer needs varying degrees of care. Some hospitals have begun providing patient navigators, and charities and resources like the Leukemia and Lymphoma Society and the American Cancer Society can be great places to start. But that will not be all-encompassing care. Patient care frequently falls on the caregiver.
At the beginning of my sister’s cancer journey, I wish I learned the skill of delegating. I didn't understand how long her journey would be, or how much had to be done. I did my best to manage it all, and as the list got longer, I didn't know what else to do but to continue to try and accomplish it all on my own.
Now I know the importance of reaching out for help. This applies to both the patient and the caregiver. Seeking support is not a sign of weakness. Cancer is hard. It is not something that one or, even as was the case with my sister and me, two people should do alone.
While we had immense help on the home front, that rarely extended to any part of her care beyond picking up or dropping off scripts and aiding with transportation. In the beginning, delegating specific tasks and recruiting people to help would have lessened the burden on me as the main caregiver.
As time wore on, I thought if I stepped back, I’d be seen as someone who was giving up or failing. That made it hard to ask others to step in. I tried to fill every role and in the end, it was beyond exhausting. Often that caused the moments with her when we could have been making genuine memories to be stressful for me.
When it is all beginning, it is easy to underestimate how much needs to be done. At times, we go through our lives on an autopilot of sorts. If you stop and think about each and every single thing that is done in a day, it is quite overwhelming. When you become a caregiver, you not only do those things for yourself, but you are now helping another.
A question that is often posed to cancer caregivers is, “What can I do?”
In those moments, I would advise taking the time to stop and think about it. When I was asked, I automatically said I didn’t need help. This was in part because I didn’t want to admit I needed it. It was also because I didn’t necessarily know what it was I needed. For me, it would’ve been easier had the individuals just done something they thought they could handle and not asked. This isn’t always the case, though, so I do advise taking the help. Even if you don’t have a need in that moment, simply let them know that you’ll get back to them.
A lot has been said about cancer, but what’s rarely said is how persistent it is. Once in someone’s life, it is reluctant to leave. Any amount of time that cancer is there is too long, and this time varies for everyone. For my sister, it lasted almost three years, and I was her caregiver the whole time.
But there was also a care team assembled. She had her oncologist, her surgical oncologist and a transplant oncologist. There were also pain management specialists, palliative care nurses, psychiatrists, social workers, nurses, doctors, physical therapists, neurologists, nephrologists, pulmonologist and dermatologists. We are so lucky that she was given a wonderful care team to help navigate and heal her during cancer.
As physical complications cropped up, a referral was given and she would see somebody new in a white coat to treat her. When she was going through a transplant, a coordinating team was added to further navigate through the bureaucracy of the health care system. As wonderful as her team was, it lacked the daily at-home help that I never knew she would need.
As her caregiver and sister, I was, in essence, an entire care team for her. As opposed to her having a patient advocate, researcher, wellness coach, medication manager, chauffeur, cook, confidant and home health aide, I filled all those roles for her. I did it because I was scared and also wanted to do it all. I didn’t have the important skill of delegating.
Post-cancer, I understand that a care team is needed both in the clinical setting and at home. Patients need a team that is comprehensive, supportive and all-encompassing to aide in all the specific needs that a patient goes through, as well as, people to help support the family and friends that are also affected by the presence of cancer.