Alone in the Shadows

Helping Caregivers, Patients, and Families Connect Through Difficult Times

It’s safe to say that most of us thrive on connection, companionship, and social interactions. The mental stimulation we get from conversations and activities with others can expose us to new ideas, knowledge, and perspectives, not to mention the shared laughter and joy. Our social connections in many ways are the foundation of our well-being.

Enter stage left: Cancer. Death. Widowhood. None of these topics are easy to talk about. They may make us feel uncomfortable. They may tug at our own fears of mortality or conjure feelings of powerlessness. Some of us may need to protect ourselves from our own emotional pain and so we might keep conversations on these topics light and non-confrontational. Or, we might be afraid we’ll say the wrong thing, so we say nothing at all.

Six weeks after my husband died, I met a couple of friends for dinner. It was my first time out since his death, and I had not spoken with any of them since his memorial service. I didn’t feel like going, it was our first holiday season without Nasir, but I thought the social connection was important. I figured I’d share a few minutes when asked about how my children and I were doing. Except, neither my husband’s recent passing nor how we were doing ever came up in conversation. Instead, the two-hour dinner conversation was about upcoming holiday plans, challenges in their marriages, and losing the holiday weight in the new year. I left the restaurant feeling more alone than when I arrived. These were thoughtful women. I figured they either didn’t want to trigger me or be brought down by a conversation reminding us of our mortality. Or maybe they were afraid they might say the wrong thing. Prior to my husband’s passing, I had been guilty of each of these in my life.

The truth is I knew my husband died. It wasn’t going to trigger anything that I wasn’t already living. And whatever was said would not be wrong because I can promise you the words shared are going to be better than acting like the life changing event never happened. A simple “how are you doing?” would have meant so much. I was grateful they asked me to join for dinner, but I could also see I had entered space that was difficult for even my friends to broach.

The suffering in the absence of social connections can make whatever we are dealing with seem that much more insurmountable. It can increase the risk of depression and depending on the duration and intensity, contribute to cognitive decline. It can also lead to chronic stress causing a cascade of hormonal changes resulting in sleep disturbances, weight gain or weight loss, and long-term ill health issues for the caregiver, patient, or family member feeling isolated.

The COVID-19 Pandemic brought isolation front and center in most people’s lives. When asked what the worst thing was about the pandemic, many share the isolation. However, the difference between the isolation during the pandemic and the isolation for a family dealing with a chronic cancer or other illness is that we all experienced the pandemic induced isolation together. So, even though we were isolated from each other physically, going through the pandemic together created a shared experience that led to greater understanding and empathy for each other. We had something in common to talk about and we created new ways to connect (i.e., online) helping us feel less alone in our pandemic induced struggles.

The intense isolation often cited by long-term cancer caregivers and patients is often rooted in not knowing anybody else experiencing what the family is living. This is especially true for young families when a parent or child is chronically ill. Other factors might include the demands of caregiving making it harder to maintain social connections. In some situations, it might be the changing relationship dynamics with some people drifting away or relationships becoming strained. Cultural beliefs around illness and death can also impact isolation by how openly family members discuss and deal with the issues. The point is: There are many factors that can work together to foster isolation for the caregiver and patient.

Two weeks ago, I was out of town and joined a water aerobics class at the local recreation center. I didn’t know anybody in the class. Halfway through the instructor was talking about one of the regular members who was absent. Her name, coincidentally, was Jeannie. One of the participants asked which Jeannie and the instructor replied, “Not breast cancer Jeannie, but the other Jeannie.” I kid you not. I can’t make this stuff up.

In a surreal moment while still treading water, I asked myself were we ever identified as “the family with cancer?” We were in the shadows of cancer treatments for over ten years. It directed much of our life and significantly limited many of our social interactions. How could people not think of us or refer to us as “the family with cancer.” It was a fact. We were a family trying to survive a relentless cancer. How could our family’s identity not be tied to our experience with cancer.

I spent the last half of the water aerobics class wondering if “breast cancer Jeannie” was treated differently by the instructor and others after her diagnosis? Even if subtly, could this change in treatment contribute to feelings of isolation for her and, in turn, her primary caregiver and children? I have no doubt it would, but I also suspect it depends on how long and how intense her treatments were, and if she survived or not.

Helping Caregivers, Patients, and Families Connect Through Difficult Times

The truth is we are each going to find ourselves as a caregiver or facing the death of a spouse or another loved one. The most significant thing any of us can do to help stave off isolation for the caregiver or patient is to be emotionally present for the person. It’s not easy sometimes. It might require us to do our own emotional check in if we are feeling anxious and not sure what to do. We don’t have to have cared for a chronically ill loved one to know that what a person is going through is difficult. Ask how they are doing. If it’s a death, let them know that you know they are hurting. Grief is not something that goes away in a designated time frame either. It is lifelong. With time the pain of loss will lessen. However, in the first one, two, and even three years (maybe more for some people) the pain may still be very much alive and periodically asking them how they are doing helps them feel connected and lessen the burden of feeling alone.