Self-care for partners and caregivers

Cancer Council Queensland’s Sylvia Burns discusses the importance of self-care for partners and carers.

A diagnosis of cancer can be a really distressing and challenging event, not only for the individual concerned, but also for partners and close family members as well. Although brain tumours are relatively rare, the combined effects of cancer, treatment and the brain injury that follows pose not only a threat to life but to a person’s sense of self.

Depending on the location, the size and spread of the tumour, people can experience diverse changes in their physical functioning, thinking abilities, emotions and behaviour. The effects of neurological damage from brain tumours and treatment can make it more difficult for individuals to fully understand and come to terms with their illness creating further barriers to talking openly about what is happening for them, their fears, and concerns with loved ones.

Improve Coping

The long term support needs of people with brain tumours and those who care for them are complex. The combination of stress at diagnosis, the uncertainty of outcomes, and complex neurological impairments can be overwhelming. Often both the individual with brain cancer and their families are left with ongoing emotional distress and poorer quality of life.

Strategies to improve coping for partners, caregivers and family include ways of managing the stress reactions that can arise from frustration and helplessness when it is so difficult to make things better for those they love and care for. Although it is easy for us to put words to a page outlining what might help, taking the time to read and then translate these ideas into a coping kit and self-care plan is often put off and then forgotten.

Be informed Understand the circumstances you are facing

Become familiar with the potential impact of the tumour and treatment Ask questions until you do understand

Find Support Support group

Peer support volunteer (CCQ) Talk with a supportive friend

Access professional support from social workers or counsellors to develop your coping and caring skills

Accept help When help is offered accept it

Delegate tasks that others can readily assist with

Stay in touch Divert calls to message bank or an answering machine

Record an update message for callers – Bill is doing okay with treatment. He is mainly resting. Thank you for your concern.

Nominate someone to send out a regular email update to friends/family

Know your limits Become more aware of signs of stress

Have someone organise a roster of family/friends so you can run errands or have time for yourself

Partners and family caregivers describe the feelings of guilt that make it very difficult to take time for themselves, even when they recognise they are overstretched and drained. It can seem selfish when compared to the challenges their loved one may be facing.

Even the thought of asking for support or accepting  help from friends or other family members can be so uncomfortable, that this too is avoided until the pressure of trying to manage becomes too much.

With these tendencies in mind, you may find yourself dismissing the idea of developing a Self Care Plan. And yet, if you could stop for a moment and consider how valuable you are – your presence, your energy, your time, thoughtfulness and loving care – to your loved one dealing with a brain tumour, it makes sense.

It’s actually essential to protect yourself, to ensure that you don’t burn out and meet frustration with words and actions that can never be taken back. To make sure your future memories are as good as the situation allows, there are some simple strategies that can help and be applied to a whole range of situations.

Self Care Plan – maintaining your own wellbeing

Stay active Make time to run/ride/walk/jog/ garden regularly
Eat well Eat healthy foods and accept meals rather than resort to take-away
Relax Do things that you enjoy and that recharge your batteries Learn meditation, yoga, tai chi or other forms of relaxation Attend mindfulness classes for yourself or together
Nurture relationships Acknowledge and respect differences

As much as possible plan and solve problems together and discuss how you can best support each other

Spend relaxed time with friends and family

Plan ways to include your loved one even when unwell Be patient with yourself and others

Incorporating self-care into your routine need not take up large chunks of time or money. Perhaps taking a few moments to really enjoy your first cup of tea or coffee in the morning, really savouring the aroma, the warmth of the cup in your hands and the liquid in your mouth, the sensations of swallowing and the feeling of warmth in your stomach. Being really present for small things that you do every day can take you out of your head for a moment and ground you in your body, a simple shift that can help calm the mind.

Taking a breath (a little like counting to 10) when you feel yourself winding up or growing tense, can create a breathing space, allowing you to notice what is happening in your body, your mind and emotions, and to consider how best to respond or take care of yourself in the situation.

Be mindful especially when things are tough

Make some time now to list a few everyday things that you enjoy doing, perhaps cooking a meal or washing the car; activities that help you feel refreshed and energised. Decide to do at least one of these things in your week. Starting small in this way helps nurturing yourself become a new and beneficial habit.

S = Stop!

T = Take a breath

O = Observe/stay Open

P = Proceed with considered action