“Never say stay strong or be positive” – Advice from carer who has been looking after husband with cancer
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People looking after someone with cancer often need as much support as the person diagnosed, but it can be hard to know how to help.
Maggie’s Ambassador Charles, 62, has been looking after his husband Martin since he was diagnosed with cancer nine years ago.
He has come up with 10 top tips as a guide for those who know someone caring for a friend or family member with cancer – including never telling someone to ‘stay strong’ or ‘be positive’.
He said: “Being a carer for someone with cancer can be brutal and has a huge physical and emotional burden that comes with it, and as well-meaning as it might be, when people say things like ‘stay strong’ it can make you feel even more annoyed, frustrated and even hopeless – how is it possible for you to ‘stay strong’ under the circumstances?
“But it is important that carers accept some support.
"I hope these tips give people a better understanding of how they can best help even it seems really difficult to know what to do.
“A person caring for someone with cancer will be tired, stressed, overwhelmed, angry and much more, but there are still a few simple things to do or keep in mind to help ease their burden.”
Charles’ top ways to support a carer:
- Tell them they are doing a fantastic job.
- Treat them as an individual.
- Be blunt when appropriate - say "you must be exhausted, give me something to do to help" – make it a closed question as they will not allow you to do anything.
- Never treat them as invisible - know that they are just as vulnerable and exhausted.
- Make them feel proud of what they do.
- Be clear they have legal rights in terms of employment and support.
- Let them be angry and negative, in fact encourage this.
- Get to know the friend or family member’s illness, do not expect the carer to be the expert.
- Know that they will be experiencing anxiety and depression. This should not be blanketed in terms of "you are under a lot of pressure" it should be explicit.
- Never say "stay strong" or "be positive" these are the most diminishing statements of all.
Recently Charles’ husband Martin has made the difficult decision to stop treatment, and Charles has had to stop work and dedicates most of his time and energy to looking after Martin in what time they have left together.
Last week Maggie’s launched their You Care About Them, We Care About You campaign with research that showed that nine out of 10 people looking after someone with cancer experience feelings of anger. (Full results below)
In 2021 carers sought support from Maggie’s more than 80,000 times.
Chief executive of Maggie’s Dame Laura Lee said: “A cancer diagnosis sends a ripple through the whole family, but with so much focus on the person with the diagnosis the needs of close family and friends can be forgotten.
"And yet, they can need just as much support as the person diagnosed.
“We also know that when family and friends find the support they need, there is a hugely positive impact on the person with cancer.
“Yet many people looking after a friend or family member with cancer don’t consider themselves to be carers or realise that we can support them too.
“I hear many people say things like ‘I’m not a carer – he is my husband’ or ‘I don’t think of myself as a carer, we are just in this together’ – many people don’t need or want a label, but that doesn’t mean we can’t support them.
“We want everyone to understand that whether someone thinks of themselves as a carer or not, our centres are waiting to welcome them.
"It might just be somewhere to take a moment for themselves, or to speak to our expert staff about the variety tailored support we can offer, including better understanding treatment options, money worries and psychological support.
“Coming to Maggie’s for support for yourself is the best way possible of supporting the person you love with cancer.”
Since Maggie’s opened its first centre in 1996, the charity has developed a programme of support that is proven to help people with cancer, as well as family and friends, take back control.
Maggie’s professional staff include psychologists, cancer support specialists and benefits advisors.
Throughout the pandemic Maggie’s has been there for people by phone, e-mail and online, as well offering face- to-face appointments in our centres when possible.
Maggie’s centres are open, and this face-to-face support runs alongside our ongoing phone, e-mail and digital support.