I started this blog to share my experiences with other caregivers lost in the medical, financial, and legal chaos that ensues from a life-threatening diagnosis. Instead I find an unavoidable urge to vent about the misery that has consumed me.
Jonathan Rauch’s article in the Atlantic is like reading a better written summary of my own current circumstance. The similarities in the caregiving process, specifically the psychological hurdles and stresses, is akin to stages of grief. The caregiver’s dilemma is instinctual and human, and yet, seldom spoken about.
Image credit: Jon Krause / Article: Jonathan Rauch's "Letting Go of My Father" -- The Atlantic
How can millions of us feel so alone? For anyone seeking reassurance of their own actions, emotions and thoughts; for anyone needing guidance; for anyone that may potentially face the experience of having to care for someone at the end of their life, read Letting Go of My Father. It’s important.
Thank you, Jonathan.
If I am a typical case, the caregiver of a brain cancer patient will have time for nothing. For me, time needs to be split between work, kids, wife, father, personal interests, father’s legal matters, father’s medical matters, and (ours and father’s) bills. I can’t focus on anything because for every task I do, I think about what is not getting done in the other categories. Nothing is ever done right or to satisfaction.
Personal interests are the first thing to go. The brain cancer patient might be mostly homebound but the caregiver becomes trapped too. As the only child, I do not have another to depend on. My wife must focus on the children, who are young, and therefore most of the burden is on me. That is not to say my wife does not do a big part but I do try to shoulder as much of the responsibility as possible so the kids get as much attention as possible.
My three-year old is so upset with me that she does everything to she can to shun me when I do manage to be around. It’s a natural response that I cannot do anything about it.
Caregiving for a brain cancer patient is complicated, thankless and futile and knowing this only makes it all harder. Sadly sometimes I wish it were over, for him and us. And then I just feel guilty again.