At the end of last month, my husband Dilip and I went on a nine-day road trip from Calgary through the Canadian Rockies to Whistler, British Columbia, on to Vancouver Island, and back to Calgary via Vancouver. It was more than 30 hours of driv­ing al­to­gether, al­though we never drove more than seven hours in one stretch. In our love­ly sum­mer weather, this is doable, which prob­a­bly ex­plains why the traffic was heavy.

Dilip did all the driving, although I offered to help. Maybe I am fine as a ‘co-pilot’, reading the GPS and maps.

During the long drive, which we spread over several days, we had a lot of time to listen to music and talk with each other. I took our driving time as an opportunity to ask him what it has meant for him to be my caregiver for some years now, because I realize that there is also a journey for care­givers.

How do caregivers cope after the initial diagnosis of their loved one? How do they cope with helping their loved ones through the treatments and recovery from cancer, with the hope of a long survival? What do care­givers sacrifice in their own lives to help look after patients?

These were some of the questions I had for my husband.

At first, right after my diagnosis, Dilip dropped almost everything else except his work to help me because I was incapacitated by pain from the vertebral fractures that had led to my diagnosis. We used to share all household and outdoor tasks, such as mowing the lawn and shoveling snow, but he took on all of it. Doing all of the shopping, cooking, and driving certainly took a toll on him. We hired extra help so that he would not have to be doing all of the housework.

At the time of my diagnosis, Dilip was running half marathons, and he dropped out of that too. Preparing for these events was just too time consuming. He nevertheless managed to keep on running and cycling. Fi­nal­ly, this year, our daughters got him to run a half marathon again, along with them. Since they and their hus­bands compete in road races and triathlons, he was able to train along with them.

We have since tried to simplify our household so that we can still stay in our house without it being too much work for either one of us. There is a smaller display of annual flowers outdoors, for example. Indoors, I still strive to reduce clutter and be realistic about what I actually do have time for. Many bags and boxes of clothes, books, and household items have been donated to charity. I am fine with that, since recycling pos­ses­sions has become the norm now.

Dilip still does a lot of the driving for both of us. There are days when I just don’t feel up to driving, especially when I am taking dexa­meth­a­sone. He comes with me to a lot of my medical appointments, and it helps to have him there for discussions with the doctors and nurses.

Six years post diagnosis, Dilip still remonstrates with me about lifting heavy items, and about avoiding crowds where I could get sick. He reminds me that, if I re-injure myself, it will cause me more pain, and I won’t be able to do what I can do normally now. Mostly, I am able to live a normal life, although I bruise easily due to taking daily low-dose aspirin, and I need more rest than when I was not on medications. Some­times I just forget about the restrictions I have now, but he is there to remind me.

We do try to look after each other, though, because both of us are taking daily medications for chronic health conditions, so it is not all a one-way street of caregiving. Luckily, his health problem is not a cancer, but high blood pressure also needs to be controlled.

We try to focus on each other’s needs and dreams to make those a reality. Both of us have had to make ad­just­ments to our lifestyles, but we don’t want the myeloma diagnosis to take over our lives and deny us op­por­tu­ni­ties to pursue our interests in life. I don’t want my illness to be the main focus of our family, except in dire circumstances.

In addition, I realize that caregivers will most likely have more energy than patients do. I don’t think it’s fair to expect the caregivers to slow down to match one’s own pace. They need time to pursue their own activities, interests, and friendships.

Whether or not we ever get back on the same routines again as we previously had, we are just as close as before, and enjoy the time we spend together.

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The quotation for this month is from Epicurus (341 – 270 BC), a Greek philosopher, who said: “You don't develop courage by being happy in your relationships everyday. You develop it by surviving difficult times and challenging adversity.”