One of the difficult realities that people living with a terminal illness must deal with is the fact that life goes on much as it did before. Despite the “new normals” of doctor’s appointments and lab tests and physical changes associated with the illness, the need to maintain some semblance of an orderly existence remains. Children still need tending to. Someone needs to pack their lunches and check their homework and tuck them in at night. Laundry still needs folding, meals need to be prepared and bills still need to be paid.
For some people, this sameness of routine is comforting. Emily, who has end-stage renal disease and has been on the waiting list for a kidney transplant for two years, says taking care of her four children keeps her “grounded.” “If it weren’t for the kids, I’d spend my whole day worrying about the future and feeling sorry for myself,” she says. “Sure, they give me grief sometimes. But they’re my lifeline,” she adds.
But not everyone copes as well with the demands of home and family when they are seriously ill. Dan and Janet, for example, are struggling to maintain some degree of normalcy in the face of Dan’s cancer diagnosis six months ago.
“Life wasn’t exactly perfect before,” Janet admits. “We’ve had some financial problems, and dealing with two teenaged kids has been challenging, to say the least. And Dan and I usually disagree about the best way to deal with them when they act up,” she adds. “So we argue quite a bit.”
Now, the strain of Dan’s illness has sent the family into a tailspin, Janet explains. Her youngest son, Andy, is skipping school, missing curfews and acting out in ways that are “not at all like him,” Janet says. “He’s a good kid. And watching him fall apart like this is killing me. He’s failing everything; he’s sullen and withdrawn. And all Dan does is yell at him. And that, of course, only makes things worse.”
“I know Dan doesn’t feel good and he wishes he could get back to work,” Janet adds wearily. “And he’s scared, and Dan doesn’t ‘do’ scared very well. But Andy doesn’t even want to be around him anymore.“
“I’m losing my husband and I’m losing my son,” Janet says as her eyes fill with tears. “I don’t know what to do.”
As is so often the case with families who were struggling with child rearing, financial or marital issues before a life-limiting illness struck, both Dan and Janet feel as if their lives are spinning out of control. With Dan unable to work, financial pressures are mounting. They worry that they’ll have no choice but to declare bankruptcy as the medical bills pile up. And while Andy’s behavior is not at all unusual for a teenage boy in distress, neither Janet nor Dan has the emotional wherewithal to help him right now. Their daughter, Julie, appears to be “holding it together,” Janet says. But she worries about her emotional state too.
Life-limiting illnesses don’t just happen to individuals. Certainly, the person who is ill is most directly impacted and deserving of a great deal of support. But a terminal diagnosis creates shockwaves throughout the entire family. It can be especially hard on children, who may feel guilty, abandoned and afraid.
Nor are there any easy answers to easing the distress of patients and their loved ones. Communication is essential. But for many reasons, families are often unable to have open conversations about what’s happening in their lives. And as tension and distress increase, it typically becomes harder and harder to reach out for help.
But reaching out is of paramount importance, not only for the person who is ill but for those who live alongside them and share in their pain. No one and no family can weather this kind of storm alone. Resources exist, and they can help. But you need to take the first step.
Since I last spoke with them, Janet and Dan and the kids are seeing a family therapist who specializes in working with people who are seriously ill. Dan has also joined a support group, and talking with other people who are dealing with the same kinds of issues he’s facing has helped him “a lot,” he says.
“I see now that Andy has been struggling with the idea of losing his dad,” Dan explains. “Before I joined the group, I was so angry and scared I couldn’t see anyone’s pain but my own. It seems crazy now, but I kept thinking, ‘You’re not the one with cancer, kid. I am!’ Wow! How selfish was that?”
Dan and Janet are doing better now. Things are still tense, Janet freely admits. But they feel less out of control and more grounded today than they have in a long time. And the whole family is grateful for that small measure of peace.
Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.