Sometimes during a palliative care visit (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I am asked, "Do you have advice on how I can talk to my children?" The question might come at the time of a diagnosis, when a disease or illness is not responding to medical treatments, or when prognosis appears to be shortening (read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3).
One of the responsibilities of the palliative care specialist is to provide social and emotional support for adult patients with serious illness and their families, which may include young children. This support is usually with the help of the palliative care team's social worker, counselor, art or music therapist, and/or chaplain.
Though I am not trained as a pediatrician, child life specialist, nor grief counselor, the following are initial advice I would offer as a palliative care specialist and mom to an adult patient and fellow parent.
1. Talk to your child as soon as possible after you yourself have had time to process your own overwhelming emotions.
Similar to setting the scene when discussing serious or difficult news (read Post 17: How to Discuss Serious, Difficult, Hard to Hear, Bad News in Six Steps), so pick a time without noise or visual distractions to talk to your child. Rehearse phrasing ahead of time, and if you feel that you would have difficulty speaking because of your emotions, perhaps wait until another time or ask another person you trust, such as your spouse, to talk to your child.
Medical diseases and worsening health do not impact only the person living with them. They impact the whole family, whether it be family members making adjustments to Sunday dinner due to a diabetes diagnosis or being cognizant of the oxygen tubing curling around the floor. Your child is likely observant and insightful, and they will notice changes in day to day routine and behavior.
The first step in maintaining your child's trust that they will not be left out when it comes to big news is for them to hear about your medical illness or health situation early on.
I hear elderly patients, whose adult children are modifying bad news from the doctor in an attempt to keep their parent from suffering, sometimes comment, "I feel like everyone is tiptoeing around me. What is going on? I want to know" and "Sometimes I feel other people know things I don't. Or is it all in my head (read Post 34: Should We Tell Mom About Her Diagnosis? - Two Things to Consider)?"
Would you feel betrayed if you learned that important, life altering news had been kept from you for a long time by a person you trust? Children would likely feel the same.
2. Be truthful with simple, straightforward sentences.
As with discussing difficult news with adults, perhaps start by asking your child what they have noticed going on or what they have heard or what they think is happening.
Ask permission to share, "I'd like to talk to you about something important. Can I talk to you about it?"
Use simple, straightforward sentences to give small chunks of information at a time. The wording used would depend on your child's age.
"Grandpa has been acting differently, and the doctor said it is because he has dementia. Dementia is a brain disease where it becomes more and more difficult for a person to figure out how to do things by themselves, like using the microwave or even using the bathroom, and to remember things like what we had for dinner yesterday."
"Mommy has been tired and her leg has been hurting. The doctor said she has a type of sickness called cancer. Cancer is when some cells in the body grow too much, and strong medicine is needed to try to keep the cancer cells from growing. It's not the type of sickness that you can catch, so you won't get it."
"I saw the nephrologist today. The kidney failure has worsened, and she is recommending I start dialysis."
Your child may ask questions to learn more, or your child may not ask any questions. Give them as much information as they are interested in at the time.
3. Reassure your child that no part of this diagnosis, illness, or prognosis is their fault and that none of this is due to any of their words, thoughts, or behavior.
Developmentally, children's views are centered around self. Children commonly believe that somehow they are at fault.
"I threw a football that hit Grandpa's head back on Halloween. Is that why he has dementia?"
"I told Mommy she was mean for not letting me watch iPad. Maybe that's why bad cells are growing in her."
"This is my fault. I should have pushed you to eat better."
Give reassurances whether or not your child voices self blame.
"Dementia happens to some people as they get older. You or I or anyone in this family didn't do anything to cause Grandpa's dementia. We don't know exactly why some people get dementia and some don't."
"We all say things when we're happy and when we're mad. That's normal. Nothing you said and nothing you thought caused the cancer. We don't know why Mommy has cancer. Sometimes it just happens."
"None of this is your fault. Sometimes we try our best to control the diabetes, but the kidneys are still affected over time. This is definitely not because of anything you did or didn't do."
4. Consider being frank with your emotions so your child knows they are allowed to express their emotions too.
Sometimes a parent may want to remain stoic in front of their child to “stay strong” for their child. Certainly if emotions are overwhelming, it might be better to pause to talk another time or to have someone else talk to your child.
However if a parent never expressed their emotions, their child may think they should hold in their feelings and concerns as well. Keep in mind that expressing feelings in solidarity is not the same as relying on your child to make you feel better.
“I sometimes feel sad that Grandpa has dementia. I feel confused and wonder ‘Why Grandpa?’ because Grandpa always tried his best to stay healthy! Even if there’s no answer, I still wonder ‘Why him?’”
“Sometimes I feel scared because I know Mommy is not feeling well and I’m not sure what to do. Then I remember that Mommy always feels a little better when you lie down quietly next to her so she can tell you how much she loves you and you can tell her how much you love her.”
“Yeah, I'm mad. I worked so hard with my diet, and I ended up needing dialysis anyway.”
5. Discuss what to expect with regards to potential changes in your child’s daily life, and reassure what will remain familiar and routine.
“Grandpa won’t be picking you up at school anymore. He won’t be driving you to practice anymore. You might have to take the bus home, and I’m trying to see if I can leave work earlier on some days to drive you to practice. Your dad could probably drive you to practice on the days I can’t. I'll talk to him.”
“Mommy is going to focus on getting better and feeling stronger. You are going to go to school five days every week instead of just two. You can have more time to play with your friends! You'll have more time on that tire swing you love!”
“In the beginning, I’m going to try to drive myself to and from dialysis. If that doesn’t work out, I might need your help dropping me off on your way to school. I’m going see if the dialysis center could help me find transportation back home. They say I might be too tired on my dialysis days to be really active. So those days you might have to make something simple for dinner.”
(If you are planning to visit a loved one in the hospital or in another home or facility, prepare your child ahead of time for what they might see, such as equipment around the bed, wires connected to your loved one, or changes in your loved one’s appearance.)
6. Remind your child that they will have your love and support regardless of what happens.
Sometimes reassurances of your love may have to include reassurances that the person/people who will take care of your child are also those whom you love and love your child.
Sometimes this statement may have to be made in response to the question, “Are you going to die?”
“People with severe dementia eventually die. Grandpa’s dementia is mild and hopefully it will be that way for years. No matter what happens, I know Grandpa will always love you. Anytime you have questions like this, you know you can talk to me about them, right?”
“Sometimes people die from cancer. There are lots of strong medicines the doctors are going to try to get rid of Mommy’s cancer. She loves you so much, and she and I will make sure you are always taken care of. No matter what happens, Mommy loves you and she will always love you.”
“Well, I know you’ve read the statistics online on how long people live after they start dialysis. All I can say is no matter what happens to me, I will always love you. Sometimes things happen that are out of our control and if that happens and I die…I know your aunt Tee loves you very much and I trust her to support you no matter what you do in life, the way I would.”
7. Normalize all emotions and varying levels of response.
All responses are valid, whether it be crying or seeming disinterest with your child running off to play. Sometimes your child will need time to process information, and they may initiate (or you may have to initiate) multiple conversations or snippets of conversation over time. Remind your child that they can talk to you anytime.
Regularly check in with your child and ask how they are feeling. Sadness? Guilt? Resentment? Anger? Grief? Fear? Allow them to share their emotions without feeling judged or ashamed.
We want to protect our children from hurting, and this desire may result in important conversations never taking place. It could result in children being blindsided by life altering events and becoming hurt anyway.
I hope the above advice are helpful in initiating frank conversations – conversations that enable children to maintain trust that they will always be included with updates and their questions respected as well as conversations that affirm that they will always be loved and cared for.