In response to last week’s blog post about cortisol (which featured Dr. Doreen Rabi’s surprising explanation of how this stress hormone rises among heart attack patients AFTER hospital discharge), Jan Oldenburg sent me a note. Her note simply said:
” I’m guessing our children’s stress levels were higher, too. My husband Jon was only 46 at the time of his heart attack.” . . .
This sure caught my attention. Compared with the whack of studies conducted on patients, there’s little attention paid to the subject of how our kids cope with the awful news that one of their parents has just been diagnosed with a serious heart condition.
When Jan’s husband Jon had his heart attack, their son, Andrew, was in 7th grade and their son, Matt, was in high school.
As Jan told their story in the book Participatory Healthcare: A Person-Centered Approach to Healthcare Transformation, her husband Jon suffered an acute heart attack caused by a blocked left anterior descending artery (what doctors still call the widow-maker – the same type of heart attack that I too survived) and worse, he also had major blockages in three other coronary arteries.
He went into what’s called cardiogenic shock, the leading cause of death following an acute heart attack, and was put on a ventilator. Jan explained that during those early days, the whole world seemed to shrink:
” The locus of everything is the hospital bed, the sounds of the ventilator and the machines, the voices of others in the corridor, and the prayers in your head.
“There were so many tubes and monitors going into him and coming out again; so many things beeping, buzzing, and whooshing.
“My sons’ father looked small and frail in the bed, and he couldn’t talk because the ventilator was still in place, but he wrote a note telling them how much he loved them.
“Somehow, seeing Jon through my children’s eyes made it harder for me to cope. We huddled as a family, we cried, we told Jon how much we loved him.”
Jon’s doctors recommended coronary artery bypass surgery, but didn’t feel he was stable enough, so they wanted him to rest and heal for a month first. Jan took him home with what she calls “great trepidation”:
“I wanted him home, of course, but we were going from six days of continuous intensive nursing support to no monitoring at all.
“Each night of that month-long period, I woke up several times and checked to make sure he was still breathing – occasionally, and much to his annoyance, waking him up in the process.”
That month-long wait for surgery was about to suddenly turn a whole lot worse for the Oldenburgs. During that wait, Jon’s mother died of the ovarian cancer she had been living with for several years. Jan described the funeral as “very hard”:
” It was hard enough to lose her prematurely, but in addition, it was all too easy to imagine how close we had come to having it be Jon’s funeral as well.”
Jon did recover from his bypass surgery. But more trauma lay ahead: Jon’s brother died of a heart attack, one of his coronary artery bypass grafts failed, and he then had an ICD (a defibrillator device) implanted into his chest.
When I asked Jan how her two sons managed through one crisis after another, she replied:
” It was terrifying. They coped both in the moment and longterm, but I don’t really know how we would have managed if we had not had family living nearby.
“Both sons coped in part by compartmentalizing it; sometimes they didn’t want to know the things I tried to share with them, and I learned they needed to process in their own ways and in their own time.
“Matt actually expressed that to the Healing Touch therapist that Jon saw just before his open heart surgery. She had asked how he was doing and he said, “Well, I manage it sort of the way I manage being a goalie on the ice after the other team scores on me. I have to put it in a box and not think about it while I focus on the rest of my job. Later, I can take it out of the box and figure out what happened.”
How children manage the stress of a parent’s health crisis can depend on a number of factors, including the personality of the child, the severity of the parent’s diagnosis, and that parent’s longterm prognosis.
And most importantly, the age and developmental stage of each child also have a significant influence on how children may respond. No matter the diagnosis, having a sick parent is a scary and unsettling prospect for kids. Most resources for such families share similar recommendations:
- Younger children can’t always label their feelings, and may instead express them through their actions. Some may act out to get attention. They may misbehave or become clingy or insecure, refusing to leave the parent’s side. Some children start acting younger than their age. They can also lose interest in some of their favourite activities, or have trouble sleeping or with schoolwork. Sometimes younger children worry that they somehow caused the parent’s illness, or that they might “catch” it. As Dr. Renee Dominguez at the Chicago Child Trauma Center advises that for very young children, keep information about the illness basic, e.g. “Mommy is sick and will be going to the hospital to try to get some help to make her body feel better.”
- Teenagers are able to understand more about illness, but may still struggle to cope. Some teenagers can seem indifferent, showing little emotion or withdrawing from parents. Others may react with anger, act out or get into trouble. Teens may resent extra responsibilities or respond with offers of help and assurances of love – sometimes both on the same day. Experts recommend that keeping family schedules as consistent as possible (school, sports, Taco Tuesday, Friday game night, whatever is “normal” for a family) – can help to provide a sense of security. Parents can also share what’s happening at home with other significant, trusted adults in the teen’s life (teachers, coaches, etc.)
Some research suggests that reactions can also depend on which parent is sick – especially for younger children.
For example, a 2019 study out of the University of Western Australia on kindergarten children (average age five) living with one chronically ill parent, found that daughters of chronically ill mothers had a higher risk of physical, social, and communication difficulties.(1) Sons of ill mothers had higher risk of developing language and cognitive difficulties. The risk level increased with each additional year of exposure to maternal chronic illness.
Surprisingly, the Australian researchers found no association between fathers’ chronic illness and children’s developmental issues at that young age. They suggested that the latter finding could be because Mums are more likely to be primary caregivers at this age, meaning their illness may impact the family more.
But even adult children can have trouble coping with a parent’s serious diagnosis.
My son Ben, for example, who was in his early 30s when I had my own heart attack, told me just recently that the reason he has never been able to read more than the first few pages of my book* is because it’s too upsetting for him to read about his mother’s suffering.
In the book, I openly described what I’d gone through after being misdiagnosed in mid-heart attack and sent home from Emergency. Both of my children lived far away at the time, and, like many parents, I truly believed that there was no point in worrying them – until I was actually hospitalized with a correct diagnosis.
Each of them flew home immediately upon hearing my shocking news, and took turns being dedicated companions. My daughter Larissa did arrive at my door, however, with this stern scolding:
“Mum! Do not EVER do this to me again!”
Like most mothers, I found it upsetting when I’m the cause of my kids’ upset.
This is also why I now suggest something that may seem odd to the freshly-diagnosed heart patient: our closest family members (like our own children, for example) might NOT be the most appropriate audience for our dramatic patient stories about how awful it was for us, or about our current fears for the future.
Even our grown kids want and need us to be “better” so that they can feel less frightened about what might happen to us. See also: Choose Your Listeners Carefully
When I worked in palliative care, our bereavement counselors used to say that if you’re old enough to love, you’re old enough to grieve. Sadly, some children must cope with not only a parent’s serious illness, but with that parent’s subsequent death. For more information on helping children grieve a death in the family, read this helpful information from Victoria Hospice about how grief affects kids of all ages.
Most resources offered to families with an ill parent focus on the parent-as-cancer-patient. One of the few resources that specifically mentions heart disease is the American Heart Association’s Go Red For Women site.
That’s where I found this observation from Oregon psychologist Dr. Jennifer Connor-Smith: apparently, one of the biggest mistakes parents can make during these challenging times is to share with their children their own personal concerns about how this illness will affect financial or employment decisions. As she warns:
“Those things need to stay adult concerns. They should not be shared with children; they will only make the child feel more anxious and helpless.”
Jon Oldenburg’s heart attack happened almost 20 years ago. Jan told me how grateful she is for those 20 extra years: years of loving, years of watching their two sons grow up, and as Jan now says:
“We’re extraordinarily lucky to have Jon still with us!
“One of the consequences in both the short and long term is that we are a family that says, ‘I love you’ every time we part. We are very aware that we don’t know how much time is given us and every minute of it is precious.”
1. , et al. “Developmental vulnerabilities in children of chronically ill parents: a population-based linked data study”.
Q: How did your children manage when they learned about your diagnosis?
. * NOTE FROM CAROLYN: My book, “A Woman’s Guide to Living With Heart Disease“, was published by Johns Hopkins University Press. You can find this book:
- at your nearest library branch
- at all bookstores (please support your local independent bookshops while they still exist)
- order it online (paperback, hardcover or e-book) at Amazon
- order it directly from Johns Hopkins University Press (and use the code HTWN to save 20% off the list price when you order)
-Jan Oldenburg’s website
–Two books that might help when a child’s parent is sick are A Treasure Hunt for Mama and Me: Helping Children Cope with Parental Illness by Renee Le Verrier and Samuel Frank, M.D. and Where Did Mommy’s Superpowers Go?: Helping Kids Understand a Parent’s Serious Illness by Jenifer Gershman