Today I Cried

Yesterday, suddenly, my father’s right side became so weak he could not stand. His speech slurred. It reminded me of when I admitted him to hospital back in October when I thought he was having a stroke.

My thoughts were in contrast to what I should have been feeling. I should have been in great concern, but instead I was annoyed – annoyed that I would have to spend the rest of the day in the hospital. My thoughts about this being “it” were borderline hopeful. But I think I knew he would be okay.

He must have asked me the same questions a dozen times, as did every nurse and doctor.

I came home at about 1 AM after about 9 hours by his side. My wife was up and we spoke and I realized that I did not speak hushed while near the room where he had been sleeping for the last 6 months. In the morning I felt free to walk around my home partly disrobed. For some reason there was less tension between my toddlers and me. It was our home once more … at least for a couple of hours.

Now I’m by his bedside again and I will be taking him back home today.

We are so tired.

Only now am I starting to focus on and compartmentalize my various responsibilities. My father was diagnosed with brain cancer in early October 2009 and since then it has been a whirlwind of tasks and emotions. I realized just last week that I am starting to keep my feelings in check and not feel distraught or lost constantly. I am able to figure out what to do next in a structured, thoughtful way. It took six months to straighten out how I am going to help him for what is probably only another 3 months but now it seems rhythmic and paced.

It is obvious and yet I have to say it because is really is not so obvious: caregiving will impact every facet of your life. Six months it took for me to incorporate this sudden, painful change into my life. I still don’t want to accept that in a few short months my father will no longer be around; seeing him as the walking dead is difficult. But I now know what I can and cannot do for him, and there is some solace in that.

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.

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.

Prior to confronting a life-threatening health event, all the information we are societally provided is engineered towards the best possible medical outcome, so it is a shock when a medical outcome is just one of several matters that must be considered when the cancer bombshell is dropped. For example, in the American medical “system” inadequate financial planning during a period of illness could do more to harm an individual than not obtaining a second opinion. Society insinuates that obtaining a second opinion should be immediate and instinctual. Combined with the self-imposed pressure to do every forthcoming step correctly, not getting the diagnosis reaffirmed seems like absolute failure. If handling a crisis were simple this expected course of action would always be viable, but you quickly learn that nothing is simple with cancer and viability needs to be determined on a case-by-case basis.

Logisitics of obtaining a second opinion

When a patient is in a state where the simplest direction or process cannot be followed, as may be the case in a brain cancer patient, caregiver responsibilities cascade overwhelmingly. With such a dire diagnosis, one immediately embarks on a whirlwind of information-gathering and planning that includes

• learning about medical treatments, outcomes, alternatives, side effects, options, best practices, doctors, and health insurance minutiae;
• setting up and maintaining possibly dozens of appointments;
• understanding the legal ramifications of the situation on the patient and the family and establishing power of attorney;
• financial planning including deciphering the patient’s circumstance, as well as anticipating the impact on a family’s finances;
• figuring out the best possibly quality of life for your loved one

– to name a few.

When a patient can manage some of their health care on their own, then, with support, obtaining a second opinion may not be nearly as challenging. However, in a situation where the caregiver must take over for the patient entirely, as in our case, there are several obstacles. The most restrictive is the inability of the patient to get to appointments, or even just sign in, on their own. The most common course of treatment for brain cancer patients is several weeks of daily radiation combined with chemo therapy. The chemo, in the form of Temodar, is given in pill form, which is a relief because that can be administered at home. But of course radiation is only given at a clinic, so daily commutes are necessary. Keep in mind that the caregiver most likely has a day job, has personal responsibilities that can’t ignored, and may have a family of their own that also needs attention. Also keep in mind that cancer treatment is not a short term course of action. If the first opinion treatment requires so much time invested, it is not easily possible to add a round of second opinion appointments.

“What if I have failed?”

When you believe you only have one shot at getting it right, the pressure to do things correctly is immense. Society may blame any diminishment in the patient’s health as potentially the caregiver’s inability to “do enough.” If the patient is capable of making his or her own decisions, then not doing everything possible may mean the patient must have “given up.” Society’s assumptions are incorrect and the pressure put upon patients and caregivers, even when self-imposed, is an unnecessary additional burden.

Advice from a social worker

I visited CancerCare out of desperation to get a sense of direction. Even though I felt my father had received the best medical care up to that point, the guilt of not having gotten a second opinion weighed heavily on me. In our suite of care providers, we had the hospital’s chief of neurosurgery on the case, as well as a top-rated medical oncologist and a radiation oncologist (who was also later recommended by a family friend). This sounds like a dream team and yet I couldn’t stop feeling like I hadn’t done enough because I had not purposely chosen these people, they had been assigned to us by the hospital. The social worker at CancerCare told me that getting a second opinion is really about feeling comfortable about the diagnosis and medical care-giving. I was comfortable with our doctors and didn’t feel they had steered us wrong. My information-gathering activities had told me that there were few treatment options for my father and we hadn’t exhausted any at that point. Besides, we were already regularly seeing three doctors and had seen countless others. How many does it take before I actually have a second opinion?

More can always be done if you are superhuman enough

Exhausted from being in the hospital for about two weeks, traumatized from a bad night-nurse experience in the ICU after his biopsy, overwhelmed by the onslaught of doctors that saw him in the hospital and thereafter, suffering from confusion over the types of medications and treatments being prescribed, and the stress of moving in with me meant that my father couldn’t take more. Of course, I was with him every step of the way, taking on the full responsibility of his medical situation as would any caregiver. The deluge of responsibility is a reality that most people could not be aware of on the outset.

I’m not suggesting that a second opinion is unimportant; I don’t write this to convince people dealing with cancer to avoid a second opinion. Of course getting confirmation on a diagnosis makes sense to do. What I am saying is that we are not superhuman, especially not when dealing with such illness. After one attempts to manage all aspects of a patient’s life, finding more doctors, getting to more appointments, and managing all that this entails may be impossible. Do not beat yourself up over not having done everything like in the movies. It is highly doubtful you have not done enough. Most likely you have seen several doctors but still may not have technically obtained a second opinion.

Cancer is not easy. People who have not faced the reality of the problem will never really understand. You will challenge yourself to do your best — who wouldn’t for a loved one — but don’t feel like you failed if a second opinion, or any “must do” task, becomes insurmountable.

To the hospital’s credit, it did automatically require a second opinion on the biopsy results. As someone not in the medical field, I had no idea a biopsy, or any test, could have a second opinion done on it without going through the process of acquiring the materials again. In my father’s case the results were no different.

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

————–

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.