[PhilipandfionaParticipant]

Hi all

The more I read on various myeloma places, and cancer places in general, the more i object to use of the word “carer”.

Yes, of course, there are times when the family members of those diagnosed care for our loved ones. But there are plenty of times when they care for us, or don’t “need” care as such, and we’re the ones on the floor needing a pick-me-up. I am his wife, lover, friend, mother of his children, AND carer.

And what about the wider circle of family who are also involved, and may want to visit discussion forums (as a latin scholar in my youth i really want to write fora, or is it fori??!) but are put off by the word and don’t feel they have a place?

I worry that the use of this word has connotations about the relative power positions of the MM patient and their loved ones, and that’s not really reflective of what actually happens.

I think we all need care, and we all give care. that’s what loved ones do. I’d really like that word changed to “family” on the section titles.

• This topic was modified 9 years, 10 months ago by  Philipandfiona.
• This topic was modified 9 years, 10 months ago by  Philipandfiona.

[duskParticipant]

Very apt post Fiona. People who use the ‘carer’ label do not often see things as more complex and interactive, as many personal situations / family life is not so formally compartmentalised to fixed roles. For some of us the fight to remain normal remains strong.  The state social services system is so unrealistic in putting people into defined categories- due to carer’s allowance (for those able to get it).

I also do not like the word carer. My forth admission into hospital recently, in less than as many months, for a rather long stay had nurses asking me whether I wanted care assistants to help me bath- over my dead body was my reply- I will do it in my own time and pace!!!

[jmsmythParticipant]

Hi Fiona

I also hate the word carer. I’m not there for Frank when he needs me, just like he’s there when I need him and I certainly do NOT consider him as my carer. I agree “family” might be. Better option

Best wishes
Jean

[jmsmythParticipant]

Damn predictive txt. Should read I’m there for Frank when he needs me

[sueperkinsParticipant]

Hi Everyone

Thanks for your feedback. We use the term ‘carer’ as this enables us to cover a broad range of people who might be providing any sort of emotional and practical support to myeloma patients but not as part of a professional role.

It is difficult to identify an alternative that would capture everyone who would benefit from specific information or help – this might be friends, family members or others.
We have discussed use of the term ‘carer’ at a number of Patient and Family Infodays and the feedback has been mixed. Some people agree with you that this is not a term they would ever use or like to be labelled with. Others feel that it recognises their status and role within someone else’s myeloma and affords them the credibility to be involved in treatment decisions, care planning and other discussions.

Using ‘carer’ is also consistent with other organisations and can also prompt people to recognise that they themselves are entitled to help and support, for example requesting a GP carer’s assessment or seeking advice / using services available at a local carer’s centre.

We’re very happy to keep this under review and to seek more feedback at Infodays and Support Group meetings and from this Discussion Forum thread.
I hope this is helpful. Thank you for taking the time to give us your feedback on this issue.

Sue Perkins

Service Development Manager

[Author]

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