What Caregivers Can Depend on From Me
Hello! My name is Charles and I am sad and glad to be a part of this conversation. I want to formally introduce myself and let you know what you can depend on from me. I hope to make an impact on behalf of my beloved Mother. Naturally, I would not want to be a member in any way of any cancer community, but none of us get any choice in the matter.
Bladder cancer and my caregiver experience
Being my Mom's primary caregiver brought me to this community. Unfortunately, I failed to save her life, although I'm not quite sure how I would have saved it.
I am not an oncologist and have no actual medical training. Mom would often commend the work I was doing as I helped her through her battle. She would say things like, "What would I do without you?" Which I of course shrugged off as just Mom being Mom.
Looking back on things, though, I can see how instrumental I was in my Mom having a sense of hope and control. As she battled her heartbreaking war, she knew she had me by her side. Now I see the value of a dedicated, loving caregiver.
Caregiving affects your daily life
Caregiving meant I was frequently tardy or absent from my day job. My attendance was atrocious! Fortunately, I am a good employee and my employer was pretty understanding and accommodated most of my requests for time off.
Frustratingly, sometimes there were "staffing issues" that prevailed, and I had to find alternate solutions. This ended up falling on my niece's shoulders, and she was an absolute angel at helping me with the task of caregiving. But the time commitment of caregiving alone is immense.
By the end, I was sleeping next to Mom (if I could sleep at all) because she didn't want to be alone and needed help doing everything at all hours of the day. This meant I had to forego my love of working out and had to dial back my business activities outside of my limited participation at work.
I had no time for friends, folly, or frivolous activity. There is no aspect of a caregiver's life that goes unaffected.
Caregivers wear many hats
Mom leaned on me for hope and strength, so I did all I could to always be present. I was Mom's nurse, physical therapist, Reiki therapist, taxi, care coordinator, and counselor. I would have been next to her in every appointment had it not been for COVID restrictions.
As a result, I was relegated to waiting outside or sometimes in the lobby. I did everything I could to help her, and even when I was away from her, I was wracking my mind for ways to improve our situation or her odds of survival. In all the chaos, I lost over 30 pounds without realizing it.
I was fading away with Mom. It was all too easy to disappear inside the immensity of this disease and the unknown.
When I lost Mom to this disease, I felt such a sharp sting of failure.
Everything I had given my life to achieve slipped through my fingers, including my beloved Mom. I couldn't see or think of anything except for where I had failed or could have done better. I felt such immense guilt that I had survived this nightmare, but Mom did not.
She was the one in agonizing pain, not me. She had to face all the surgeries and treatments alone. I remember one time, seeing her dejectedly walk back from a cystoscopy with defeat in her eyes and gait. That hurt and I was right: the cancer came back.
Most importantly, the trauma of these small events added up and left me with consuming guilt, and I had no idea it was even happening. It was a constant merry-go-round of torture. This is the kind of stress a caregiver can take on.
A listening ear
So from me, caregivers, you can depend on an ear to listen to where you are in your journey. You can depend on me to stand for your health and well-being. Furthermore, you can depend on me to cheer you on, because I doubt that you're cheering for yourself.
Moreover, I would encourage you to take as good care of yourself as possible, as you struggle to save your loved one. It is hard work made harder by unrealistic self-expectations.
It is my hope that my participation at BladderCancer.net can be a bridge for patients and caregivers. I would love to increase understanding of one another's worlds more deeply. This was my Mom's second-greatest wish.