Humor seems so simple. If what was happening to father wasn’t so terrible, the changes in his thought process as a result of the brain cancer would be fascinating. Most recently we noticed he is not able to comprehend humorous circumstances like he used to. The impact on his brain certainly furthered the minor paranoia he has had his whole life but it isn’t just that.
Yesterday we found him walking around with our laundry bag. We started to laugh because we had been looking for it for weeks and he randomly found it. Instead of seeing the joke in a situation that involved all of us, he took offense that we were laughing at him. When I exlained the difference and just what we were laughing at, he simply could not comprehend.
As I write these entries, I won’t be generalizing. The problems I mention are really very specific to my father’s situation. As far as I know, brain cancer can affect any region of the brain. Because our brain has compartmentalized tasks and brain cancer, at least initially, affects a tiny area, the impact on the person will be different from patient to patient.
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- A recent scan depicting multiple gliomas
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- Front MRI image of multiple tumors
In my father’s case, the cancer affects his rear left quarter. It touches on areas of the brain that manage balance, sight, and hearing. However, the cancer also creates inflammation, which affects a wider area. This also causes short term memory loss, emotional instability, and lack of concentration.
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.
Friend: how’s dad?
Me: he’s struggling. We went to a restaurant the other day and it was tough to watch him eat.
Me: overall he’s okay but for us, it’s tough watching someone die.
Me: no happy news there, unfortunately
Friend: right
Friend: how much does he know?
Me: he’s disappointed that the treatments haven’t gone better and that he needs to continue to his medications
Me: he talks to me about what he hopes to do when this is over
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We don’t plan on telling my father his prognosis is bleak. There is no point because, at this point, he cannot process stress well. It will only pain him to know the last few months of his life are spent being dependent and mostly homebound.
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.
Nearly five months out from the original indication that something was wrong, my father feels cold all the time, his sense of proportion is lost, his sight and hearing wanes, the short term memory fails, and sometimes basic or routine functions seem unfamiliar to him.
It’s not fair.
It might have made more sense to have started this blog when the problems first appeared but the chaos that ensues after the initial diagnosis is not trivial and thoughts of doing something for yourself disappear for many months. At least, this is how I experienced it. I see very little information of a personal nature on what and how people deal with brain cancer, so I wanted to put something up to help people who may be going through something similar.
I have learned a lot, not just about medical matters but the legal and financial concerns that come with the burdens of the American medical “system.” I am certain the hurdles faced are similar with anyone that faces a life-threatening disease; the difference that I see is that brain cancer degenerates a person rapidly and therefore all the activities that come with planning for death occur at a heightened pace.
I can’t imagine this site will be uplifting; I certainly feel no joy right now. But I will do my best to explain all the things that we go through and have gone through, so others who might face the same problem will know what to expect and make decisions and find resources with somewhat less stress. You can always contact me if you need someone to stumble through the process with you.
