Today’s topic is not pretty or trendy. It is a serious topic but one that I hope is useful to families that are dealing with a life-limiting illness diagnosis. I hope that no one needs this information, guidance, and encouragement but the truth is that life-limiting illness affects families from all backgrounds, and often when they least expect it. When Rachel Fearnley PhD, reached out to me with some tips on parenting through a life-limiting illness, I felt compelled to share them because when one find’s oneself cut adrift, it can be useful to have a lighthouse to offer guidance on how to get back to a good place.
Thinking the Unthinkable
by Rachel Fearnley PhD
I’ve worked with children and families (in the UK) for many years, most recently as the manager of a Barnardo’s family support service (a national charity working to support vulnerable children). Through my work I have come to truly believe that being a parent is one of the hardest jobs in the world. You don’t generally get much training for it and just as you get one bit right, something else happens!
But what happens if you are diagnosed with a life-limiting illness? Suddenly your role as a parent becomes a whole lot harder. The life you knew changes in one difficult conversation with your specialist and suddenly the taken for granted way of family life is rocked to the core.
This is a subject we don’t often think about. Let’s face it, it is not the kind of thing we particularly want to think about when we have got busy lives doing 101 things at once. But the sad truth is it is something that might happen just when we least expect it. We know that life-limiting illness is not prejudiced and can (and does) affect people from every social background, colour and race. Here in the UK, over one hundred children a day will experience the death of a parent and thousands more are living with the knowledge that their parent has an illness from which they might not survive.
Research tells us that a parent’s first thoughts, when given their diagnosis, are about their children. What are they going to say to their children? How are they going to tell them? How much information do they give? When, why and how? But research also shows that it is unlikely that the health care professional will offer any support or advice about this really important aspect of the illness.
Through my work in family support and my academic research I have become increasingly interested and curious about how family life is affected following the diagnosis of a life-limiting illness. From stories I have heard I know that suddenly being the parent you were pre-diagnosis often changes. Sometimes the shock of the news means that your perceptions of the kind of parent you are change and parenting is no longer as it was.
But where can you go for support? Certainly here in the UK there is limited support and it often seems a bit of a post code lottery. There are some excellent examples of provision but these are the exception not the rule. I have been working to address this but often feel as though I am a very small pebble in a very big pond. Being the creative type I decided that if my voice was not going to be heard via conventional routes then I would write a novel, Our Family and IT, to help raise awareness about this important but neglected area of social concern.
The family in Our Family and IT are forced to face changes and challenges after the mother’s diagnosis of a life-limiting illness. The chapters are written by the different family members (including the three children aged 6, 14 and 18) and take the reader on a journey. IT becomes the uninvited guest in the family and as the story develops the frustrations, anxieties and impact all become very real.
The book tackles a sensitive and difficult subject and one that as a society we don’t tend to think about, let alone read about in a novel. My sincere hope is that through the book people engage with and relate to the family and start to think more about what is happening to people in every community.
Suggestions For Parenting Through A Life-Limiting Illness
From my practice experience I would like to share my ‘top tips’ for parenting through a life-limiting illness. These might not work for everyone and are certainly not ‘set in stone’ but I do think that they may help parents navigate through a difficult time.
- Talk to your children (about what is happening) and encourage them to talk to you. Some parents understandably try to protect their children by not talking about it but usually the children will have worked out that something is wrong – even when they don’t know for sure.
- Give them information about the illness – involve them so that they don’t feel left out. Ask them how much they want to know about what is happening.
- Don’t be upset if they choose to talk to people who are not within your close family unit. They may feel safer talking to someone who is not so closely connected to the family.
- Make time to listen to your kids. They may take time to feel able to express how they are feeling as they try to work through the news – that is okay.
- Try to maintain routines and boundaries. This is not always easy because of the effects of the illness and treatments but it is important to try and keep things as normal as possible for your children.
- It is okay to ask for help, it is not a sign of failure.
- Remember your children are likely to be experiencing all the emotions that you are – but they might express feelings in different ways.
Most of all remember that you know your children better than anybody else – you are the expert about your family.
Although the diagnosis is likely to affect family life, it is not always negative. There are positive things too to come from the illness, for example being able to spend more time with your family and making time to create special memories. I have heard from families where they have become closer because of the illness and their relationships have become stronger.
Whatever is happening and however difficult it all feels, it is important to try and remember that you are the same person, circumstances have changed not you. I can’t deny that it is not easy being a parent with a life-limiting illness but with support and love from people around you, you can still be the same mum or dad that your children know and love. You may even become a better parent.
There is no way around it. A life-limiting illness is rough news and you need to find ways to grieve, get out your anger, or deal with whatever emotions you may have- a support group may be useful. It is also important to remember that your children still need you and you can go through this together.