What we call "the new grief" begins when a family member learns that he or she has a terminal or potentially terminal illness. Receiving that kind of diagnosis confronts families with a type of crisis that is entirely different from the type that they confront when they learn that a family member has suddenly died. Sudden death -- even in a family member who is known to have a serious medical condition -- affects families differently from a terminal diagnosis that marks the beginning of a long and difficult journey. Like it or not, ongoing advances in medical diagnosis and treatment mean that families are increasingly likely to find themselves facing this latter crisis. Not all families will react the same way.
Mark's diagnosis of advanced colon cancer came as a shock to both him and his wife Julie. Only 49, Mark had rarely suffered from so much as a cold, much less cancer. Always an active and athletic man, he was also a highly motivated and successful attorney, a loving husband and father, and an unofficial coach and tutor to his two daughters.
Shocking and upsetting as it was, Mark's attitude about his diagnosis pretty much reflected his attitude about everything else in his life, be it a challenging legal case, a desire to complete a marathon, or helping a daughter who was struggling with math. His approach to all of these things was marked by optimism and perseverance.
When Mark and Julie told their daughters about his diagnosis, the girls were understandably upset. As you'd expect, they were anxious, and they cried. At the same time, neither one panicked. They expressed concern for their father, but aside from that their lives went on, as Mark wanted them to.
The glitch came when Mark told his siblings and parents about the diagnosis. He had two younger siblings: a brother, Jim, and a sister, Jessica. His brother, along with his parents, lived close by. His sister, however, had left home to go away to college and had never returned other than for vacations. She and her own family lived a thousand miles away. Mark's and Jessica's families maintained regular contact via phone and email, but they got together only twice a year.
To his chagrin, Mark found that his parents and his brother reacted to the news, in his words, "as if they either couldn't hear it or didn't want to hear it." It was immediately, abundantly, and shockingly clear to him that his diagnosis made them so upset that they could not deal with it. When Julie tried calling Mark's mother, the response she got was, "There's nothing wrong with Mark!" Then the call was dropped.
Given that reaction, Mark decided not to pursue the issue. As he went through a grueling treatment regimen that sapped his strength, he did not ask either his brother or his parents for help -- for example, to take him to his chemotherapy treatments or pick him up from them. His sister was more willing to listen, and she called and emailed Mark often. But she lived too far away to be able to offer any concrete help.
As Julie described it, she, Mark, and their daughters endured the crisis of his diagnosis, prolonged treatment, and eventual death three years later more or less by themselves, with some emotional support from her family (who also lived far away) and Jessica. Thankfully, Julie had several close women friends who offered tangible help (e.g., taking the girls for overnight visits, doing food shopping, etc.). Mark, though, hesitated to ask the few friends he had for that kind of help, and he saw them less and less often as time passed. Julie thought Mark must have felt very lonely, though if he did, he never let on.
The differences in how families react when faced with a terminal diagnosis are determined in part by personality factors. One of the most important of these is what is called "resilience." Not only do individuals differ from one another in terms of how psychologically resilient (versus "fragile") they are, but entire families can be more or less resilient. That's because every family tends to establish its own culture, and one aspect of that culture has to do with how resilient it is.
What is resilience? It is a personality trait that is associated with certain ways of looking at life and responding to crises. Research has shown that individuals with a resilient approach to life are less vulnerable to both emotional problems (e.g., anxiety, depression) and physical problems (e.g., hypertension, insomnia). To sum it up, resilient people (and families) have the following outlook on life and its crises:
In contrast to the above, psychologically "fragile" people (and families) act as if they believed the following:
Individuals and families are not necessarily conscious of the above beliefs; rather, these beliefs are revealed through their actions. Here is the essential difference between psychologically resilient versus psychologically fragile individuals and families: faced with a crisis such as terminal diagnosis, resilient individuals and families will marshal resources and confront it; fragile ones, in contrast, will avoid it as much as possible and become paralyzed.
Julie came to realize that Mark's family was decidedly on the fragile side of this dimension. "I can see now how they've always been that way," she explained. "I mean, Mark told me more than once how he'd had to 'parent his parents' since he was 12 years old. He gave me examples of how, whenever something went wrong or one of the kids got into trouble -- no matter how minor -- his parents would act as if it were a catastrophe. He said they'd become paralyzed." So Mark, beginning from an early age, had been the one to step up to try to solve crises whenever they struck. As a result, Mark became much more resilient than the rest of his family. But when Mark got sick, his family lost what little resilience it had.
As Julie learned through a series of conversations and emails only after Mark's death, one reason Jessica had moved away and stayed away was that she wanted to avoid playing the kind of role that her brother had taken on.
Julie's family, though far away, stayed in close touch with her and the girls throughout the crisis. "They never seemed to be afraid to hear the truth about how Mark was doing," Julie said. "They'd do their own research online and send it to me. They'd send care packages to the girls. And my widowed aunt flew in and spent the last six weeks of Mark's life with us."
One reason why your family might not be able to "be there" if you are faced with a terminal illness may have to do with how resilient they are. Their reticence does not mean that they do not care; rather, it reflects their (often unconscious) attitudes about life and about crises. That said, the good news is that people can move from being psychologically fragile toward being psychologically resilient. To do so, however, they need to keep the above differences in mind, and to be willing to examine and, if necessary, challenge their outlook every day, so as to gradually embrace beliefs that will support a more resilient approach to life.
Follow Joseph Nowinski, Ph.D. on Twitter: www.twitter.com/NewGrief
Joseph Nowinski, Ph.D.: 5 Steps to Take After a Traumatic Diagnosis
Andrew Kneier, Ph.D.: Accepting Death and Letting Go
Lisa Copen: Why Are We Expected to Be Brave in the Face of Illness?
Indeed, first reactions to the news of a terminal illness mirror to some extent initial reactions to learning of a sudden death: a sense of unreality combined with dread. What I'm talking about here is a different phenomenon: the difficulty some people and families have facing a crisis even after the initial shock has worn off. That is where resilience versus fragility can make a difference. Resilient individuals and families will confront the crisis, whereas fragile ones will want to flee from it. Becoming more resilient begins with understanding it. Unfortunately, fragility can be mistaken for callousness.
Thanks for your comments. Look for my next blog on Mourning and Creativity.
My own family has always dealt with issues of illness (and other problems in life) with discussion and openness.
When I was diagnosed with breast cancer, my children didn't really have the vocabulary to discuss the disease. Since we are all readers, we dealt with it the way we knew best. My daughter (16 at the time) started reading Alexander Solzenitsyn's Cancer Ward. I read it with her. The book offered us a way to face the unknown.
It takes a village...
http://graciouslivingdaybyday.com/
While I was not terminal, 2 years ago I was diagnosed with aggressive cancer. My sister and mother live 1200 miles away (or, a 3 hour plane flight). They did not even OFFER to come out.
I don't have lots of friends (of my own making I'm sure) but did have enough to drive me to surgeries, etc when I could not drive myself. But every chemo and every radiation treatment, I drove myself, sat alone in the chemo room and just accepted it as the way things were.
I think a big part of me will always have some resentment that these two woman(mom and sis) didn't come to help me; but I'm still here and will be here for any friends who ever need a shoulder should disease strike them or someone they love.
Blessings, truly!
You are right in saying that denial is a defense--just not a very useful one. Just as addicts will deny that they've lost control over their addiction (drugs, gambling, etc.) so can we deny losing control when a loved one is diagnosed with a terminal or potentially terminal illness. Denial works in a way, but it does not help make us more resilient. It is a "flight" not a "fight" reaction to a threat. The fact that your sister and mother avoided you in your time of crisis does not necessarily mean that they do not care about you. But too bad for them that they chose to flee--they will probably not handle their own crises very well. I'm glad you're still here and rady to step up for any friends who may need someone to do that.
My sister? I'll never understand that one. But I've moved on and resentment wanes each day. I think the key is to be myself and not use their inaction as anything I'd want to aspire to.