Impact on families and relationships
Your child’s illness will affect each family member, each relationship, and the family as a whole. Everything feels different and more difficult because of changes in routines, changes in roles and responsibilities, and because of the added stress including sometimes being separated from each other when your child is in hospital
It is natural for everyone in your family to have different ways of understanding, feeling, and expressing themselves. These differences can be challenging. If you can talk openly about each person’s thoughts, feelings and needs, you can help everyone to understand and help one another. It can take time and practice to get comfortable talking about difficult feelings but talking together can help to bring your family closer. As one girl said, “We made it through a really hard time before, so I know we can make it through anything together.”
This section talks about some of the reasons why relationships change and how you can help. Learn more about changes to relationships with your:
- Child who is ill
- Other children
- Extended family and friends
Depending on how long your child has been ill, you might find that your relationship has changed. Sometimes it feels closer, and other times it might feel strained. This section talks about some of the reasons why relationships change and how you can help.
More time together
When your child is ill, you may spend a lot more time together. This time will give you and your child a chance to get to know each other better. You can learn to support each other in different ways. But it is also natural that, at times, you might get on each other’s nerves.
How you can help
- Take breaks from your child. Ask another family member, trusted friend or babysitter to spend time with your child while you go for a walk, visit with a friend, or do something that you need or want to do.
- Invite your child’s friends to visit.
- Find a volunteer in the hospice or hospital, or at home, to be with your child.
- Do “normal” activities in a different way. For example, hold a movie night, or a spa day. Decorate the room or play music to change the mood.
Stress and worry
You and your child may both be feeling stress and worry. It’s natural for you and your child to pick up on how each other is feeling. You each might avoid talking about feelings or worries in order to try to protect one another. Unfortunately, this usually makes both people feel more isolated and worried about the other person.
How you can help
- Talk openly about your feelings. Offer clear information and listen to your child.
- Encourage your child to talk about their feelings and worries.
Different ways of caring
When your child is in the hospital, nurses and other healthcare providers may do some of the parenting tasks you did before your child got sick, like bathing or changing your child. At the same time, you may have to learn to do many new things for them. You may have to learn a lot about their illness, treatment and medicines. Sometimes, you have to help them with things they used to do for themselves, like feeding, dressing and other kinds of physical care. This kind of help can make children and teenagers feel frustrated about losing independence and control.
How you can help
- Think about what you do and don’t want to do to care for your child. Talk to your healthcare team. If there are things you’d like to do yourself, let them know. If there are things you’d like to learn to do, they can teach you. But If you feel uncomfortable with things like holding your child for a needle or giving them medicines, ask a team member to take on those roles. It’s okay to do some things sometimes and ask for help at other times, if you feel too overwhelmed.
- Speak with your child about their own preferences for care including who cares for them and how they are cared for. This may help to ease the sense of frustration they may feel.
- Talk to a Child Life Specialist at the hospital or hospice. They can help you think about other ways to manage your new roles. They can help your child cope with medical experiences.
If you have a partner, your relationship to each other and as co-parents will be affected by your child’s illness and care. You may have heard that many couples separate or divorce when a child has a serious illness. Some couples do separate or divorce, but it does not usually happen just because of the stress of the illness. Many couples grow closer after going through a difficult experience together.
If you are separated or divorced, it can be very difficult to co-parent when your child is seriously ill. It will help your child if you can find a way to work together and communicate in a positive way to make sure that your child gets the best care possible.
“At first, my son’s step-father started off recognizing that although we were divorced, we still were a family unit. We were the ones who were going make the decisions, and to gather as a unit to figure out what steps were next. He was properly just being a support person for his new wife.” – Steve, father of Jack
In a partnership, it is difficult but also natural for each person to have different:
- Understandings of the child’s disease and their future
- Wishes about treatment plans
- Feelings of grief and hope
- Ways of coping with stress
- Needs for support or time to themselves
- Ways of expressing their thoughts, feelings and wishes
- Comfort levels with how much they share or keep to themselves
How you can help
- Talk openly and without judging
- Listen to your partner
- Try to understand your partner’s feelings and needs
- Talk to your healthcare team if you need more help. They can help you find a counsellor, therapist or support group
“Near the end the choice was to go back to hospital or not. Helen was clear that no, she didn’t want to. I questioned it for a couple minutes. I didn’t question her, I just questioned for myself if it was good to stay at home. We were pretty much on the same page, just worrying about each other because his care was for an extended period of time. I was just making sure we had the support and I was advocating for that support in-house. I think the trick is to do as much as possible and build that home team up as much as possible-- to hope for the best while preparing for the rest.” – Darren, father of Tyler
If you have other children, they will probably feel the strain of the illness on your relationships with them. Siblings of children with serious illnesses often feel left out or “forgotten” even if they understand why their brother or sister is getting so much attention. It’s hard to support your other children when you are exhausted, stressed, grieving, and pulled in too many directions.
“Sometimes our daughter acted like she resented her brother for being sick. She acted out and made parenting extremely difficult sometimes when we knew her brother was dying. It was hard to give her the attention she needed when we knew our days were limited with our son. But in the end, we made sure she was included in as many decisions as possible and knew she was as scared as all of us. She had the choice to be with her brother when he died and what she wanted to do at his funeral.” – Carla, mother of Xavier
How you can help
- Talk openly. Try to let your other children know:
- You love them no matter what
- You can see that the changes in your family are very hard for them
- It’s okay for them to have a range of feelings, including feeling angry, lonely, or jealous of the attention their brother or sister is getting. There is no right or wrong way to feel but there are right and wrong ways to act out those feelings
- Spend time together. This time can be as short as 15 minutes every day. You could spend time talking on the phone or by video chat if you can’t be together in person. This regular time together will tell your children that they matter to you. It also helps to keep the lines of communication open.
- Offer choices about when and how they would like to spend time with their brother or sister. If they can’t be together in person, help them arrange phone or video chats. Choices help siblings have a sense of control and can help them feel connected to you and to their brother or sister.
“I found that books were one of our really helpful tools for giving Milena some understanding and for opening the table to conversation and questions from her. You don’t know what a little kid is thinking and creating a space for them to share that is the first step in figuring out how to support them.” – Esther, mother of Elianna and Eli-Grace
When your child has a serious illness, you will have much less time to spend with other family members, colleagues, or friends. When you do have time, you may feel tired, stressed, or distracted. When you are together, you might have trouble relating to people who don’t have the same worries that you have.
Other people might react differently to you as well. It can be very hard for them to understand what you’re going through, how you feel, or what you need. They might not know what to say, or they may say nothing because they’re afraid to say the wrong thing.
Family members and close friends usually want to know what’s going on with your child’s treatment. But they may have different ideas about what they want to know and how they want to get information. Some people don’t want to talk about problems. Others keep bringing up things that are upsetting. Some people look for someone to blame for what’s happening. Every person in your life will react differently.
How you can help
- Tell others how you feel and how you would like to be treated. Share a story to show that it’s okay to talk about your child. Suggest what they could say or do differently.
- Choose how you spend your energy. There may be days when you don’t have enough energy to explain things to others.
- Find someone who “gets it”. When you have so little time and energy to spend with other people, it’s very helpful to talk with a family member, friend, or a parent of another child with a serious illness who understands and is willing to listen.
- Join a support group, in person, or online. Ask a member of your child’s health care team to help you find one.
- Share information with family and friends. It’s up to you and your immediate family to decide how much and with whom you want to share information about your child.
- Make a plan about how to share information with important people in your life. Here are some ways to do this:
- Gather people together in one place to share information
- Set up a group email or blog
- Choose one or two trusted people and ask them to share updates with the larger group
Sometimes your family’s reactions will surprise and worry you. The people you might expect to be helpful may be too overwhelmed by their own feelings. You may find that unexpected friends or family members are the ones who offer the most support. Try not to let the opinions of others have a negative impact.
Relationships with grandparents can pose unique challenges for the parents of children who are seriously ill. Grandparents often feel intense grief and a desire to protect both their children and their grandchildren.
They have experience parenting their own children in a particular way. They may have strong opinions about their grandchild’s care that are different from yours.
At times grandparents may feel helpless, hurt, grateful, guilty, frustrated, disappointed, excluded, misunderstood, or a combination of these or other feelings. Grandparents are often torn in terms of who they hurt for most - their own child or their grandchild. As hard as it may be, try talking openly about these feelings so that everyone can understand each other. Talk about ways to work together to handle the challenges you all face when a child is ill.