His reactions are difficult to understand. To my wife, he can’t be in the same room with her. To the home health aide, he often gets angry and utters obscenities. To me, he is always kind and understanding, or at the very least, silent about his disapprovals. To the children, my father is lovely.
For my wife the situation is very difficult. Because of work I cannot be home, while she must be home for the children. The aide is there to help but he only comes four hours a day. My wife must take care of the kids and help my father to some extent. It is a thankless job for which I can do no more than thank her. My father responds by being unkind and I do not know if he is to blame. Sometimes when he is lucid he apologizes for his behavior.
It is romantic to think such difficult circumstances can bring people even closer but I fear this will irreparably damage us instead. I don’t want this cancer to affect us forever.
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.
My father is 67, just a few years into retirement. He had never been admitted to a hospital; he had never been seriously ill. My father lived alone for over 20 years, content with being a single man after the divorce, and fully capable of living his own life until October 2009.
When he called me to say he wasn’t feeling quite right, I didn’t waste time going to him. Though we spoke infrequently, he had never complained about not being well. My father can be stubbornly proud and now he was asking for help, so I knew it was serious. When I arrived at his home he explained that he had experienced several days of dizzy spells but what made him call was his sudden inability to read or write that day. I thought he was having a stroke so I took him to the hospital.
Hospitals take stroke and heart attack candidates in immediately, so within an hour a cat scan was taken. The ER doctors pulled me aside, explaining that this was more complicated than a stroke. They never openly stated the terminal nature of their cursory diagnosis but acted consoling enough to give me the hint. It’s impossible to process this in such short time. There is no point in doing so since there is nothing you can do but work alongside the system created by the medical establishment, a system designed specifically for families who don’t know what to do next.
He lay in the ER bed for several hours and then was taken up to the surgical ward to await further assessment. That was day 1; that’s how it all began.