If you’re a mother or father reading this, then you’ll understand when I say ‘once a parent – always a parent’. It’s a role that we think we have control of, as gradually we let go of our emerging adults, whilst they strive for independence and autonomy. However, if the adult child is diagnosed with cancer, the goalposts can swiftly change.
Parents and their feelings
There is not a great deal of information around about how it feels for the parent of the young adult with cancer – and even less, if the child is over 40. (Academics term ‘young adult’, or ‘provisional adult’, as the period between the ages of 20 -39 years old). Yet, if I were to ask any parent with an adult child with cancer, I’m aware they might say or think some of the following:-
- ‘Is it something I’ve done?’ - Parents often admit to feeling guilty – wondering if it’s their fault. Worries expressed might include concerns about things they ate during pregnancy, environmental factors, family history and genetic influences. Realistically, the guilt is misplaced, but can feel very real.
- ‘I’d rather it was me’ – Many parents I’ve spoken to over the years express the heartfelt wish that the cancer had happened to them rather than their child. A cancer diagnosis brings a sense of helplessness and loss of control. Parents see their role as protecting their child, however old, from pain and distress. The parents may feel they need to treat and nurture the adult as a child again, rather than the adult they’ve become.
- ‘I’m not coping well with the news’ – parents may find they feel preoccupied with the cancer news, to the exclusion of everything else going on in their lives. There may be an overwhelming urge to ‘fix’ the problem – endless internet searches, and questioning. Parents may find they suffer from lack of sleep and concentration, loss of appetite, and feeling anxious and tense.
- ‘I don’t know what to do to help’ – now their children are adults, the lines are blurred between helping and hindering. As parents, the urge to step in and take over may be tempered with the recognition that their child is a grown up and is independent now. There may also be the adult child’s spouses, partners and/or grandchildren to consider.
- ‘I feel so angry/scared’ – intense emotions can feel disabling at a time when the parent feels they should be ‘strong’ for their child. The intense sense of rage, if it happens, can feel unexpected and draining. It’s natural to feel a range of emotions, and at times, feel overwhelmed by them. Anger and fear can sometimes feel closely related – perhaps triggered by the sense that things feel out of control.
How to help
The main thing to remember is that there are things you can do to help. As a parent, you have a unique knowledge of what makes your adult child ‘tick’, although none of you may have faced a life changing event like cancer before.
- Establish good and open communication early on – talk about what is happening. Work out with your son/daughter what you can offer in forms of help. Acknowledge their feelings and your own. However, it may also be a time for portraying less panic than you may be feeling, as that may influence how your children cope too.
- Information gathering – it can be tempting to google everything, and research other treatments etc. Knowledge is power, and knowing about the cancer and treatments can give a sense of control, but not everything on the internet is factual or accurate. (See our blog on ‘Finding accurate cancer information’). There may need to be sensitivity too. Your adult child may feel pressured if you overwhelm them with everything you’ve researched.
- Whilst they are your ‘child’ – they are people with their own views and approaches to life. In many families, your child, (however old), may naturally turn to you for support at this uncertain time. However, some children try to protect their parents, and you may feel side lined a little. Emotions may be fraught at times, and being calm in the midst of other’s distress can be helpful.
- Recognise that your role may be big or small in getting your child through their cancer and its treatment. Family relationships differ. You may have other children who will need support, or they may be the ones providing key support for their sibling.
- Value and respect the other important people in your child’s life. They may have a partner, children, and friends who want to help too. Work together to form a plan/schedule to help support the whole family. Create a list of resources and help you can all tap into, to help the treatment months go as smoothly as possible. People often find an app, such as ‘Jointly app’ (Carers UK) helpful, to keep everyone informed and organise rota’s etc. Acknowledge that it may not be you who is doing most of the organising.
- Offer concrete suggestions of help, rather a vague offer. It may be running them to hospital, attending appointments, looking after grandchildren, liaising with work/college/university, cooking a meal, etc.
- Financial worries? The subject of money can be sensitive. However your child may be worried about work, bills to pay, and the financial implications of having cancer. They may accept your help and advice, but be prepared that they want to sort this on their own. Guide them to seeking advice and support from an appropriate source – for example, Maggie’s Centres have benefits advisors available to talk things through with. Alternatively, they can continue our Maggie’s online benefits advisor.
- If possible, help everyone work towards keeping a feeling of normality about things. Living with cancer may bring new routines, but your adult child will appreciate being identified as the person they are, rather than the cancer they have. They are still the person they always were – warts and all.
Looking after yourself
There’s no doubt that your adult child’s cancer diagnosis is likely to tip your world upside down – particularly in the beginning. There may be other key stages that trigger additional emotional stress and upheaval. If your son or daughter has a cancer recurrence, or has a cancer which cannot be cured – then the goalposts change again. Whilst the bigger picture may be daunting, focusing on the ‘here and now’, can feel more manageable to start with.
Recognise that you can’t do everything for your adult child – and, in fact, they may not want you to. Take time out from the situation, when you can. Your spouse or partner, and the rest of the family may want and need quality time with you too. Have breaks, where you treat yourself – even if it is for a few hours, a day or longer.
You may be putting on a brave face for your family, and particularly for the adult child with cancer. The stress of ‘holding it all together’ can feel overwhelming at times. Your own emotional and physical health may be affected, and compromise your ability to help out when you can. Releasing the inner turmoil, and talking through how you’re feeling, can ease the tensions.
Don’t ignore physical or emotional symptoms – see your own GP if you’re feeling unwell, or are having health problems. Research shows that families, mothers in particular, put their adult child’s care needs above their own – and this can cause future ill health issues
You can find support through local cancer support groups, carer’s organisations and online forums. Maggie’s Centres offer practical, social and emotional support for you and your family. It gives the chance to be among people who understand how things are for you. You can ask about our support for family and friends . Alternatively you may prefer to talk to someone on a one to one basis. You can also message us here online, for support and a listening ear.
Challenges and Role Changes in Caring for Adult Children With Cancer Laura Bourdeanu, NP, PhD, and Patricia Cannistraci, DSN, RN, CNE JADPRO
How I supported my daughter through breast cancer Breast Cancer Now
When your adult child has cancer Canadian Cancer Society
Using the FOCUS model to work with caretakers of adult children with cancer Counseling Today April 2014
In the Shadows: How to Help Your Seriously Ill Adult Child (Paperback – March 1, 2013), by Patricia Ringos Beach (Author), Beth E. White (Author)