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What cancer means for carers


by Sue_maggies

‘You can do anything, but not everything'

(David Allen)

Most of us can identify with the moment we hear someone close to us has cancer. If it’s a family member, our partner, or a close friend then our lives can tip upside down too.

You may find you’re overwhelmed by feelings of anxiety – this is someone who is very important to you – and the cancer can be a life changing event. Some people deal with it by being immediately practical – thinking of the treatment process, finding out facts, assuring the person that everything will be fine. Indeed, in many cases it will be…eventually, but there are hurdles to cross along the way.

For others, thoughts of an uncertain future, and the possibility that their loved one may not recover from the cancer, can loom large and yet remain unspoken. It can shake your foundations.

Feelings

This is an emotional time – you’ll have good and bad days. You may find you have a short fuse, difficulty concentrating, feel on 'alert' waiting for the next crisis. It's possible to feel overloaded with trying to keep on top of normal daily life hassles – as well as the caring factors themselves.

If you’re a parent of young or teenage children, there may be other pressures on your time, and trying to keep it all together can feel very difficult sometimes. Meanwhile, if it’s one of your parents…you may be feeling torn between wanting to look after and protect them, whilst also upset at seeing them unwell, and frail.

If the cancer has come back, or is now not curative, then along with the physical and practical caring issues, are the worries about how you might manage. You may wonder how you’ll handle the changing situation, more involved care needs, more financial stresses, and managing the grieving you may feel for the future lost.

These are natural emotions and feelings. Macmillan Cancer Support discusses these in their website article on ‘how you might feel’ (when caring for someone close to you with cancer). They talk about a range of emotions, which you may identify with, including resentment, fear, depression, anger, loneliness/isolation, frustration, and guilt. I’d throw in anxiety and sadness too.

A study discussed on the ASCO Post website looked at psychosocial and mental health concerns of breast cancer survivor’s partners – the researchers found that almost half had long term anxiety, sometimes years after the original cancer diagnosis. There can also be relationship tensions, and parenting worries. Interestingly, it noted that some partners coped by withdrawing emotionally, and with aggressive behaviour. This could be a warning sign to both the cancer patient and partner, that anxiety levels are very high.

Having made caring sound the most depressing task you’ll ever undertake, that’s not the whole picture. There will be times when you find you may grow closer – that there are moments you’ll treasure, new memories made. If it’s helping someone through their cancer treatment and beyond, there can be relief that the treatment is over too. Like the person with cancer, though, you may find you’re watching and waiting for new symptoms, or struggling with how cancer has sometimes changed the relationship…so looking after yourself is important.

What does seem apparent, is that coping strategies are needed to help get through this difficult time for both the person with the cancer – and you.

How to cope

  • Find someone or somewhere to talk about how you’re feeling. It might be a close friend, other family members, a support group, online forums, or at somewhere like Maggie’s Centres, or here at Maggie’s Online. Be open with your loved one too – keep communication links alive – you’re in this together. He or she may have important things to say to you too – and by brushing the unsaid things under the carpet, it can add to the sense of loneliness.
  • Recognise if you feel you’re struggling, emotionally, physically, and practically. You’re not superhuman – and fatigue, stress, depression and anxiety can build up, because, perhaps, you feel you should be able to cope. Cancer.Net's webpage on 'caregivers taking care of themselves' includes a wise comment:- ‘One of the most important—but often forgotten—tasks for caregivers is caring for themselves. A caregiver's physical, emotional, and mental health is vital to the well-being of the person who has cancer. To be a good caregiver, you must be good to yourself.’
  • Visit your GP and discuss any overwhelming emotional and physical symptoms you’re feeling – sometimes some time out from work is needed, and/or some counselling etc.
  • Speak with work, about the situation you’re dealing with, and negotiate how they might support you, during this time. Flexible working, reduced hours, time off if possible for hospital appointments, etc. (See NHS Choices Employment rights for carers, and Maggie’s Cancerlink’s section on Work and caring. - links at bottom of page)
  • You may be concerned about the financial impact that being a carer is having. There’s still bills to pay, more travel costs, time off work, extra costs for the household, particularly if you’re caring for someone at home. Maggie’s CancerLink’s section on Financial help for carers has links to helpful websites and resources. You can also drop into one of our Maggie’s Centres to speak to a benefits advisor, or read through our benefits blogs online.
  • Take time out, away from the situation. You need a breather, time to do things for you. Even if it’s only a couple of hours away from being on ‘full alert’…you can hopefully relax a little. Spend some time with family and friends if you can…these relationships are important building blocks both now, and in the future.
  • Accept offers of help. You’ll find many people make vague offers, and genuinely mean them…but people need to be directed. There’s a helpful phone app from Carersuk.org, Jointly’, which is a mobile and online application created by carers for carers - it is designed to make caring a little easier, less stressful and a lot more organised. It can help with organising practicalities, keeping people updated, and could be used to allocate reminders and tasks that need to be done…things that someone might help with. A lift to hospital…childminding for a couple of hours…collecting a prescription, etc.
  • If you're a long distance carer - many of us live some distance from family, and there may be added stresses for you at this time. Do read 'Being a long distance carer' for more useful tips and advice.
  •  I mentioned earlier about your own health. Look after yourself – try and eat regularly, take some exercise, and rest when you can. This can be hard to negotiate some days, but your wellbeing is important. (See our blog 'Nutrition: - Carers').

Conclusion

When someone you care about has cancer, you may find you put all your energy, and love, into supporting them. It may feel selfish sometimes, to long for life to be as it was before. It can be hard balancing home life, work, caring for the children, or looking after an elderly relative. 'Me' time becomes a rare commodity.

If you're looking after someone with cancer, then remember to look after yourself too. You may need help and support, so that you keep well, physically and emotionally. Maggie's is here for family and friends, as well as the person living with cancer. Hopefully, my blog will give some help and support for anyone who is a carer, and feeling alone.

Meanwhile, I’ve added some useful links for carers to access - knowledge is power. 

Warm wishes

Sue

Resources

Support for carers     Maggie's Cancerlinks

Work and caring      Maggie’s Cancerlinks

Financial help for carers     Maggie’s Cancerlinks

Jointly app      - Carers UK

How to care for someone with cancer      - (Netdoctor)

Your own needs as a carer     - Marie Curie

Looking after someone with cancer   -  Be.Macmillan

If you're about to become a cancer caregiver -  American Cancer Society

How you might feel       - Macmillan Cancer Support

Survivorship Symposium 2017: Almost Half of Partners and Caregivers of Young Breast Cancer Survivors Experience Long-Lasting Anxiety    -     The ASCO Post   

Caregivers taking care of themselves    -  Cancer.Net

Benefits and Carers 1: Who counts as a carer?  Benefits blog/Maggie's

The conversation: Benefits and Carers      Maggie's Online Community

2 Comments

  • Tom_maggies wrote

    Carers should be able to access financial support in a simple and clear way. However, in recent years there have been some added complications and slowing up of processes, with interesting developments in Scotland.

    There are amounts carers can claim individually. Other amounts may depend on your finances and to a greater or lesser extent on the finances of the person you care for. You can see a mini-series of three blogs on Benefit for Carers, starting with the one in the resources link above. You can also find wider information on benefits for the person you care for, as you may be helping them sort those out too.

    Please feel free to post any general queries and share experiences of carer's benefits in the Benefits and Carers conversation (see link above). For an individual, private chat, you are welcome to message me or drop in at your nearest Maggie's Centre to speak to one of my Benefit Advisor colleagues.

  • Rachel24 wrote

    So good to read this. I have been struggling to express how I feel, and to admit I'm not really ok when I'm not the one who has the cancer. Really reassuring to realise that those emotions are ok to experience. Thank you.