When a Parent's Life is Limited

The instinct to protect our kids from harm was very strong. Every part of us wanted to not tell them that their dad was ill and dying. But we also knew they'd guess at some point, they might google partial information, blame us for hiding the facts or blame themselves for changes they could see. We realised that we couldn't shield them from sadness. And so, we supported them by openly sharing our feelings.

When things changed we agreed on the facts together, then decided who to tell. We called it, "one truth". We didn't always tell everyone everything; it was sometimes too uncertain to share. But we never lied. If the kids asked, we never denied them the truth. We said, "I don't know" or shared our "one truth", even the hard truth. The kids did not take in all the facts, but we never denied it. And that matters now.

Our kids have a six year age gap, so they had different questions based on the complexity they could handle. We always kept to the same facts, and to reduce overwhelm we adapted the words or details to suit their age. We encouraged them to keep asking questions, so they got the whole truth in their own time, in "bite-size" details that they could cope with. Learn more from the Ruth Strauss Foundation here​.

Sometimes talking about it one-on-one was better, and at other times our kids benefitted from hearing each other's questions. There was no fixed formula to talking, but we encouraged cross-pollination of information between our children so they could learn to support each other. They seemed to help each other to feel safe. We also sometimes "let them" hear the adults talk, so they could ask their own questions.

Giving each child focused attention, plus doing the normal everyday stuff, is exhausting. Sometimes we didn't have the energy to care for our kids, or appointments meant we couldn't be there. Other family members, friends and teachers were crucial to help our kids feel loved, even on tough days. Now those relationships help them to share their grief, and they've learned which adults in their lives "get it".

Usually our kids needed a break to recover from deep conversation or emotionally intense moments. They seem hard wired to avoid overwhelm and often needed to take a break from their feelings. We actively encouraged the activities which felt fun for them, together or alone. For instance getting outside, baking or listening to music. Some days that became the most important way to spend time.

Our kids needed to be active in their own lives, at school and with friends. They wanted to forget about it all when possible. But they also needed to let it out at home. Often when the front door closed or their head hit the pillow it all came out. We still need more days now with nothing on than before, because being alone at home is the only space that they feel safe enough to process their really difficult or big emotions. 

The school holidays are crucial for processing emotions together. They give extended time as a family to talk, listen, play and laugh, without routine limits to our day. We made as many lasting memories as we could on the days that Mark was well. It helps our kids now to know how to remember their dad, and they enjoy doing those things, because they remember that he loved doing it with them.

Incurable illness can make everyday life unpredictable; things can change dramatically in hours. Maintaining routines on a "good day" can help everyone to feel safe and more in control on a "bad day". It might be boring to be organised, but practical support reduces cognitive load and, if "normal" life has a predictable structure, it's easier for kids to advocate for themselves.