Tips for Caregivers

During the course my chemotherapy and immunotherapy treatments to treat my bladder cancer, I did have caregivers who spent a lot of time with me during those difficult times. I wanted to share some tips with those soon to be caregivers or who might be taking on the caregiver role now with a someone facing bladder cancer treatment.

Be aware of emotional needs

I think it’s essential for the caregiver to be aware of the emotional needs of the bladder cancer patient. I wanted things to be as "normal" as they could, yes I was going through treatments, and there were side effects from the therapies, but I still wanted to maintain my daily routine and dignity. I was also more open to talking about my journey, which helped, but as far as talking about my feelings, it was more difficult for me. Caregivers should understand that some people will be willing to share more than others and when they do decide to share, be there to listen.

Be flexible

The other thing is being flexible. As a caregiver, and depending on the needs of bladder cancer patient, caregiving can range from everyday tasks to preparing meals, grocery shopping, housekeeping, and managing side effects. For me, during therapy weeks I needed help with cooking meals, grocery shopping, and housekeeping duties. Most weeks I was too fatigued to do those things, and keep in mind as you go through chemotherapy or immunotherapy the treats are cumulative, so the fatigue builds up over the course of treatment.

Communication is essential

Communication between the cancer patient and the caregiver is an essential. I know for me, making sure to communicate what I needed and even asking my caregivers to accompany me to doctors visits and keeping notes of the conversations was important. A lot of times before appointments, I would have my caregiver write down questions I wanted to ask the doctor so that I didn’t forget any questions. Most times my caregivers would remember the questions before I did and ask them, which was a great help.

Take care of yourself

Another thing I was mindful of with my caregivers is reminding them to take care of themselves. When I was having a good day and feeling good, I wanted my caregivers to take the day off and go something they wanted or needed to do. I have been in the caregiver role and know how crucial it is to get away and spend time friends or someone I could talk to about the stress I was under as a caregiver.

When you’re the caregiver, it easy to ignore your own wellbeing. Be sure to take care of yourself, and if there are early signs that something’s not right, make an appointment to see your healthcare provider.

Editor’s Note: With heavy hearts, we regret to inform readers that on February 27, 2021, Curtis passed away from stage IV bladder cancer. Curtis’s advocacy efforts and writing continue to impact many. He will be deeply missed.