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Care for the Carer

Two people holding hands in an affectionate manner

All you want is the best outcome for your loved one, to see them thrive once more and you’ll do anything you can to make that happen. But life can be tough and often lonely for you too. Aside from the immense shock and sadness for everyone involved, there can be impacts that affect you physically, emotionally and psychologically.

From the moment of diagnosis, the dynamics of your relationship may shift slightly which can be disconcerting and uncomfortable. There’s no rule book written to tell you how to cope with this. Up until now you may have been purely the partner, son, mother, wife, friend…but now you may also be the researcher, the advocate, the note-taker, the ‘strong reliable one’ helping everyone else. Your roles and responsibilities may have to alter.

Your routine may be very much changed and life in general can be uncertain and exhausting for you both. Watching someone you love having to give up or postpone parts of the life they loved, noticing their fear and witnessing the drug side effects and the discomfort and tiredness can be very distressing. Often the very person you want to share all these thoughts and feelings with is the very person you also want to protect and shelter from any more worries.

 

Both of you may find it hard to broach certain topics, each of you trying be strong for the other. You both want things to return to the time ‘before diagnosis’, when life was more carefree, where the world seemed a safer more predictable place. All these feelings are very normal although it seems like you are on an emotional rollercoaster that seems impossible to stop.

Facing an unknown future makes it so hard to be present in the here and now, especially when there are multitudes of appointments to attend, myriads of problems to address such as financial and employment changes, accessing trials and treatments which may mean re-location as well as managing the children’s stresses and routines. What you would both give for a short break when you could press the stop button and return to your life ‘as it was’.

There is hope and there is help. You do not need to do this alone. MPA is here to provide information and emotional support for anyone impacted by melanoma, and that includes both those who’ve been diagnosed and those who love them.

As a starting point, acknowledge your feelings firstly to yourself and then maybe to a supportive friend, relative or the MPA counsellor, as it can be difficult to share these raw feelings with your loved one. Talking with someone who is somewhat removed can be much easier and allow you to express your true feelings. Unfortunately pressing the stop button is not usually an option but being supported with care and information is.

Be kind to yourself, just as you are to your loved one. They are also worried about you and often feel responsible for the often big changes that this diagnosis has brought into your lives. They want you to look after yourself too.

‘Care for the carer’ – just like on the aeroplane, when the flight attendant advises ‘fasten your own oxygen mask first, before helping others.’ If you take care of yourself, you’ll be less likely to suffer stress and anxiety, and better able to support your loved one and enjoy your time together.

Here are some suggestions that may ease the load:

Practical

Consider enlisting some help from your friends, family or community supports to:

  • Share the driving to appointments, maybe contacting local community transport, meals or cleaning services.
  • Set up times when you can each take a break from the seriousness of what’s happening—both together and separately. Friends and family want to help, they just need to know how.
  • Ask friends to mind the kids or help with odd jobs around the home
  • Maybe set up a meal roster at mealtrain.com

Your back-up crew are just waiting to be given ideas about how they can help out – just as you would be wanting to do if this was happening to your friends or family.

Emotional / Spiritual

  • Use counselling services such as MPA, your local GP or faith counsellor.
  • Make a regular special time to nurture your relationship – trying not to talk about the illness, the results nor the treatment during this time, just enjoying each other’s company — maybe try to do something fun, familiar and/or memory making with your loved one.
  • Join a carers’ support group – MPA offers online and face-to-face support groups.
  • Keep up your social and community contacts and activities, even if it’s at a reduced level.
  • Explore relaxation and well-being techniques such as meditation, yoga and massage.

Physical

  • Exercise regularly, especially outdoors.
  • Make time for nutritious meals; don’t rely on snacks if possible.
  • Try to make time for rest, sleep and recuperation.

Remember, MPA is here to provide information and emotional support for anyone who is impacted by melanoma. Call our National Support Line on 1300 88 44 50 for further support, information and counselling.