Intensive Care: What to do with your children when a parent gets sick

When my husband and I promised, “Til death do us part,” I thought we’d have a little longer to drive each other nuts. But as I finished up my work day one Friday in September, my husband called.

“I think I have jaundice,” he moaned.

“Stop smoking crack, honey, you don’t have jaundice,” I sighed.

But he did, and a visit that same day to the emergency room turned into a month-long stay in intensive care.

One of the reasons we’d missed the slow onset of Scott’s illness is that much of our focus each day is given to other people: our employers, to be certain, but primarily our 3-year-old daughter Emerson. And while she provided moments of humor and levity at the hospital, it was clear that she was in the way of medical personnel, and that her presence was not welcome in many quarters of the hospital.

That left a divide between what was happening in our lives and what was happening in her life.

Toddlers and preschoolers, adventurous as they are, still crave order and structure, and tend to be creatures of habit. So when Daddy wasn’t there in the morning to grump around, and Mommy wasn’t there to give her “hugs and mooches,” it could have thrown her off considerably.

But Scott’s brother and his wife took her in while I stayed with Scott for what we thought would be an overnight or weekend visit. But he was in the midst of acute liver, kidney and lung failure brought on by a spontaneous bout with a dangerous autoimmune disorder called thrombotic thrombocytopenic purpura (TTP).

He walked into the ER on a Friday night. By Saturday, he was unconscious and breathing only with the help of a ventilator in the Cardio-Pulmonary Intensive Care Unit at University Hospital.

Our shocked family watched him balance on the precipice between life and death. Together, we learned to read his monitors, watched over his vital signs, read to him and massaged his muscles.

There was just one hitch: The one person who has the greatest effect on him is Emerson. But children are not allowed in the ICU patient rooms.

And while her stay with her greatly adored aunt and uncle softened the transition, Emerson was the one person who could have taken my focus from my then-dying husband. And I needed to be with him.

So after a few days, we shipped her off to my parents’ home in Atlanta. And while I’ve never regretted the decision, I’ve often wondered if I could have done better for her.

Dr. Reginald Pilcher, a member of the pediatrics staff at Doctors Hospital, says that parents need to choose what is best for the individual situation — but that the philosophy to cling to is one of honesty, patience and inclusion.

“Our instincts say, ‘Protect the child from all of this.’ The worst thing you can do is to isolate the child from the situation,” Pilcher said.

And, of course, that’s exactly what I did for the first two weeks, when everything was touch-and-go and I spent almost 24 hours a day at the hospital, in an area where Emerson was not allowed. She knew her father was sick and that doctors were taking care of him.

And she knew that Mommy was with Daddy.

Luckily, my family reported that Emmie was mostly the happy-go-lucky child she usually is, except for occasions when she would stop and moan, “I miss Mommy and Daddy.” But she was easily distracted from her distress by other forms of play, and they repeated that doctors were doing their best for Scott.

It would have been easier for them to tell her that Daddy was going to be fine, but Pilcher says that’s a dangerous trap to set.

“Don’t make promises that can’t be kept, like, ‘I promise you that Daddy will be here for Christmas.’ You just don’t know,” Pilcher said. “It’s important because after [illness or death], they’ve got to have that strong faith and trust to fall back on.”

And making statements that later turn out to be false undermines that trust.

Once Scott was stable, and I felt we’d asked enough of my extended family, we brought her home, got her back on her regular schedule and back into her wonderful preschool. But it might have been better if we’d never gotten her off the schedule at all.

“It is good to try to keep activities going for the child,” Pilcher said. “If the child’s in soccer, and the mother’s sick, the dad needs to try to keep the soccer going, and to make the games. To try to keep things as normal as they can. And to try to plan new activities, like, ‘Today we’re going on a picnic.’ Those can create good memories that the child can rely on later.”

Oh well. She had lots of fun with her cousins. And when she returned, we had a better handle on Scott’s illness. I could explain to her that Daddy was very sick, that Mommy and the doctors were doing their very best to help him and that she wouldn’t be able to see him for a while.

When she asked, “Will he come home soon?” I answered honestly, “I don’t know, honey, but I really hope so.”

Those explanations were adequate, according to Pilcher.

“By keeping the child informed with accurate information at their level — the trust can always be there,” he said. “Children need things in increments, just like we do, but it doesn’t hurt for a child to know almost everything that you know.”

The American Academy of Child and Adolescent Psychiatry (AACAP) breaks down children’s reactions to illness and death by age, with the caveat that each child is different: Preschool children like Emerson usually see death as temporary and reversible, a belief reinforced by cartoon characters who die and come to life again. So they aren’t usually overly anxious about a serious illness.

Children between 5 and 9 begin to think more like adults about death, yet they still believe it will never happen to them or anyone they know. So they are more easily shocked when serious illnesses or death invade their childhood paradise, and may experience acute anxiety about safety.

Children older than this tend to understand the permanence of death. They react more like grieving adults, and respond in ways adults recognize and to which they can respond.

But there is also something called “anticipatory grief,” Pilcher said, which should also be taken seriously.

“Children whose parents are in the armed forces or in jobs like policemen or firemen, where they’re seeing on TV all the time that these people are getting killed — they can go through the same grief process as someone who has a relative at home who is terminally ill,” Pilcher said.

An 8-year-old boy can put together that his father may not make it home from Iraq, for example, and begin to act out. A child who has a parent with a non-terminal but long-term illness can react similarly.

To combat this, parents and caretakers should be prepared to listen without judgment about how a child feels, and without a goal of fixing the child’s distress. There are no words to fix their feelings, and children should simply be made to feel as though they have a trusted adult to whom they can express themselves.

Adults should also be honest to the child with explanations that are age-appropriate. For example, very young children should be told that when something dies, it stops moving, doesn’t see or hear anymore and won’t wake up again. Or, that Mom or Dad will be very tired and spend a lot of time in bed, and that it is important to help them by playing quietly and by being gentle when touching. Questions should be answered simply but honestly, in a soothing voice with comforting gestures.

And finally, adults should find ways to include children in long-term care. Pilcher recommends that even children as young as 4 or 5 can be given simple jobs to do.

“Now we’re all going to do this together to help Mom. You job is going to be to help mom with her oxygen tank, or to fold all of mom’s gauze, to keep them involved. They’re part of the caregiving then,” he said.

And even in cases where an adult is not terminal, it’s possible to see changes in children’s behavior.

“In those situations, you can go through the same feelings [as with a death], you just don’t have to explain that [the parent] might not be here. That’s a biggie, especially to an older child,” Pilcher said. In other words, there may still be a grieving process, due to fear, anxiety and instability or changes in the family, but the end result may not be as grim.

Again, finding a way to include the child is the optimal way to help them through the illness or grieving process. At Appletree Academy, the children in Emmie’s class made a giant “Get Well” banner that everyone signed, including most of the teachers in the school. Emmie was so proud of it, and she was able to take it to Scott once he was moved out of ICU. It was her gift to him after having been separated for so long.

Well, not too long. Once he woke up, I snuck her in to the CPCU at University Hospital for a brief few seconds of waving and blowing kisses from the doorway, until the nursing staff good-naturedly shooed us away. Shout out to the nursing staff, by the way, with some of whom Scott still keeps in contact. They were nothing short of incredible.

One of the reasons I chanced sneaking her in is because the best way to make the situation as bad as it can be is to keep children in the dark, or to allow the lines of communication to break down between caretaker and child. Pilcher recommends that information about a parent’s illness — or eventual death — come from the primary caretaker, whether that is the second biological parent, the sick parent’s new spouse or another relative closest to the child — and as quickly as information is available. In short, I felt strongly that Emmie needed to see Scott to understand the situation.

That’s because children, little sponges that they are, pick up on more than adults give them credit for. They may not be able to articulate what’s going on around them, but they understand that something is wrong. Not having a name, face or explanation as to what that thing is can give rise to greater, more powerful and encompassing fear than the situation warrants.

They may find something about the situation and make an association that adults cannot connect, and see as strangely superstitious or illogical. For example, if the family attended a Little League game the day before Mom’s diagnosis, a child may associate baseball with illness — or even something as specific as the hot dogs eaten at the game.

Almost every child is going to display some sort of coping or reactionary behavior, according to the AACAP. Many children will regress and act younger than they are. They may blame themselves for what happened. They may lash out in anger, cry more than usual or cling to an adult. Those are normal, and should abate over time, according to Pilcher.

But there are times when children may experience serious coping problems with grief. In those cases, they may need professional assistance to get through the process. According to the AACAP, children who are having serious problems with grief and loss may lose interest in activities for a long time, be unable to sleep or eat, fear being left alone, excessively imitate the person who has passed, repeat statements that they want to join the deceased, withdraw from friends, refuse to attend school or demonstrate a prolonged drop in school performance. Those are all causes for concern, but can be improved by an experienced professional.

Fortunately, Scott’s illness never progressed to the point where that became an issue. He is now home, back at work and while not completely recovered, has greatly improved.

Luckily for us, Emerson was so well supported by our friends, family and her teachers that she experienced few ill effects from the experience. She also benefits from a father who is ridiculously loving and playful with her.

The strength of their relationship has been only slightly affected by the experience.

“When I was growing up in in junior high, this friend of mine’s father was killed in a traffic accident. This kid who was usually pretty withdrawn became the class clown. It was a coping mechanism. Kids will create coping mechanisms,” Pilcher said.

Right now, three months after Daddy’s release from the hospital, Emerson tends to demand that I do everything for her — and while it hurts Scott’s feelings, I think she still fears a little that “Daddy be tired.”

But Pilcher recommends giving about a six-month window to get things back to normal again. And hopefully, by then, we’ll all be back to driving each other happily nuts.
How Children Express Grief or Anticipatory Grief

Preschoolers:

  • Bedwetting
  • Thumb sucking
  • Clinging to adults
  • Exaggerated fears
  • Excessive crying
  • Temper tantrums
  • Regression

Elementary school-age children:

  • School and learning problems
  • Preoccupation with the loss and related worries, daydreaming, trouble paying attention
  • Bedwetting, regression, developmental delays
  • Eating and sleeping problems (overeating, refusing to eat, nightmares, sleepiness)
  • Fighting, anger
  • Pre-teens and early adolescents
  • Physical symptoms (headaches, stomachaches, sleeping and eating disorders, hypochondria)
  • Wide mood swings
  • Able to verbally expresses emotions
  • Feelings of helplessness and hopelessness
  • Increase in risk-taking and self-destructive behaviors
  • Anger, aggression, fighting, oppositional behavior
  • Withdrawal from adults
  • Depression, sadness
  • Lack of concentration and attention
  • Identity confusion, testing limits

Courtesy of the American Academy of Child and Adolescent Psychiatry.

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