Breast Cancer: A Caregiver’s Perspective

When N. J. started her cancer treatments in December of 2018, several people told us to expect “chemo brain”—a common side effect of chemotherapy treatments where the victim—oops, I mean “patient”—has difficulty focusing and thinking clearly.

What neither of us expected was that something like “chemo brain” would happen to me, her caregiver.

I found that I could function well on tasks that are habitual, including talking to people. (I doubt if people I talked to realized how I was feeling.)

I managed to juggle times and locations so I could continue training four days a week for two Masters Provincial swim meets in the spring, while still being available when N. J. needed me. Since I’ve been swimming four times a week since I was in university, that was one of the things I needed to keep doing for both my physical and mental health. (Yes, I did well in both swim meets.)

I felt that I was doing a reasonable job of looking after N. J.:

• I was able to do all the shopping and make good meals, adjusting for the dietary changes her side effects seemed to require.
• I made numerous trips to the library to pick up books and videos to keep her distracted from the pain.
• I took responsibility for getting the medications and even learned to give her daily injections in her stomach or thigh seven days a week for eight cycles.
• From early December until June, N. J. didn’t trust herself to drive, so I had to take her to all her appointments, including the 21 straight days of radiation 30 minutes away in Newmarket.
• I even learned to recognize that N. J.’s numerous periods of grumpiness had nothing at all to do with me, even if I was the target. And that my attempts to diffuse the grumpiness with humour didn’t always go over well (although it did help ME!) :)

But when it came to some of the other things that I wanted (needed) to do—things that required what I consider my strong points: creativity, problem solving, persistence—I found myself coming short.

I had a long list of items that I really wanted to do, but I couldn’t get anywhere with them because, honestly, I just didn’t care enough.

The apathy I felt toward those things was really disturbing. I didn’t feel sad, or gloomy. I. Just. Didn’t. Care.

For example, there was a point in the spring when I had a letter that I should have written and sent two weeks earlier. But it wasn’t ready and I didn’t care. Well, I guess I did care intellectually, but not enough to actually focus on finishing the letter and sending it.

I’d sit down to work on it and be immediately distracted, and end up doing something mindless—reading, watching a movie, watching sports on TV, playing Wordscape, etc. I called it being distracted. And that was clearly a symptom. But it was more than that.

One day, I started thinking I should invite some of our grandsons over for a play day—how many grandparents have a drum set and a Lego room in their basement? But I had no energy to even set something up, and, although I love spending time with my grandkids, I didn’t care.

That was the moment when I realized what was happening.

Before I left IBM in the spring of 2009, I’d gone through a long, difficult time at work, mostly due to ongoing conflict with my boss because of tasks that didn’t fit my skills.

Unfortunately, it led to my neglecting my job.

Then, one Tuesday in January of 2009, I heard Clara Hughes (winner of multiple Olympic medals) talking about her experience with depression on Bell Let’s Talk Day (a national awareness day for mental health).

Clara started listing some of the symptoms of depression that she had experienced and I sat there going, “Got it. Got it. Got it….”

Until that moment, I’d believed depression was about feeling sad and sorry for yourself, and that wasn’t the case for me. I was frustrated and somewhat angry, but not sad. It was an eye opener to realize that I was experiencing depression.

I talked to our family doctor and he explained that I could get counselling or medicines to address it, but I found that, for me, just naming it was enough for me to deal with it.

I did some research on depression and one article hit home for me. The author said depression can be related to medical or psychological reasons, but sometimes it is just a kick in the pants to get out of a situation you shouldn’t be in. That was certainly the case for me at work.

I’m not sure how that advice fits the recent cancer situation, other than living with a cancer patient was definitely not a situation I wanted to be in, but since neither of us had any choice in the matter, we just had to get through it.

Anyway, because of that earlier experience, I was able to relax and accept what was happening to me this time—to realize that it wasn’t the time to do other things, and to just focus on what mattered—N. J.’s health.

Now, I wonder if perhaps the apathy I felt, rather than being a mental health problem, was actually a mental health solution—a coping mechanism. If I’d tried to do everything AND be a caregiver, I would probably have self-destructed.

What I needed to do was talk about it and set expectations with the people who normally counted on me. Thank goodness, “My wife has cancer!” gets pretty universal understanding. I stopped feeling guilty about using that excuse to explain my neglect of other things.

As I think about it today, I can see that there was a sense of internal prioritizing going on, maybe subconsciously.

Perhaps it was a way for my body/spirit to keep me from being overwhelmed by the emotions involved with having my partner go through such trauma. I was able to ignore things that weren’t actual emergencies without the feeling of responsibility (guilt?) that I would normally feel.