The word "Carer" - We want your feedback!

[nashy]

Hi all!

As you know, over this year we have been thinking about the future of the SANE Forums, we have sought out your feedback a few different times – so thank you so much for always being up for being involved in the direction of the service you use and the community you belong to. One of the things we keep hearing out in the world is the limits of the word ‘carer’. It’s been a very important term to bring understanding to the incredible work family, friends and loved ones do supporting people with complex mental health issues. But it also has its limits.

For example, the Carer Forum is for any person who cares about someone experiencing complex mental health issues – it could be a friend, boyfriend/girlfriend/partner, spouse, colleague, any direct or extended family members (including sons/daughters/children, parents, aunties and uncles, grandparents, cousins etc etc etc) – really anyone who has a question or needs support to do with their role as someone who cares about/supports someone with mental health issues.

It’s estimated that for every person experiencing a complex mental health issue there are 5 people around them supporting them in some way. But we’re not reaching them and we wonder if they would think that the ‘Carer Forum’ is for them. We’d love to hear from both people with their own lived experience as well as family, friends and carers:

1.    How comfortable are you with the term carer?

2.    Do you think calling the forum here 'Carer Forum' comes with challenges?

3.    What other term do you identify or connect with? Why?

4.    What do you think about the term ‘Family & Friends’ or “Family, Friends & Carer’ (including the name Family & Friends Forum)?

Thanks so much awesome community For further musings we also have a really interesting article around this here.

[eth]

@nashy  just thinking out loud ..... the NDIS calls most of those people you mention 'informal supports' and only one person is the legal nominated 'carer' (with centrelink too).  But I don't think that language would work for the forums.  I think 'carers forum' works in this context.

I just did a quick google for synonyms for the word care and the only two I see that are remotely suitable is 'helpers', or possibly 'supporters'.

[Darcy]

1.    How comfortable are you with the term carer?

I think of the term more in relation to medical communication and am very comfortable with it and generally only use it in that context, it denotes that you are the person who provides dedicated care to the person in treatment.

It is also the official term used in Govt services, carer gateway /centrelink.

2.    Do you think calling the forum here 'Carer Forum' comes with challenges?

Not at all, we are here because we care.

3.    What other term do you identify or connect with? Why

This depends on the situation. I would only use the term 'responsible person' or 'enduring guardian' should the need arise if involuntary treatment papers are given. In day to day life I think of my husband as my partner/lover as I am his.

The terms family,  carers  (caregivers) and to a lesser extent support people is used in scholarly articles and it is an accepted term across jurisdictions. To my mind, support people tends to denote those who are paid to provide care such as a social worker in a group home.

4.    What do you think about the term ‘Family & Friends’ or “Family, Friends & Carer’ (including the name Family & Friends Forum)?

Not sure,  it seems to me though that few friends seem to post, the majority of carer forumites being parents, partners or siblings. Depending on the level of care required, often one person in the family is the designated care giver. Using both families and carers denotes a separation which may not reflect that most carers are family members, although not all family members provide dedicated care.

[Appleblossom]

I found it difficult to get used to the word carer at first, but understand why it may have been suggested.  It irked me as overly formal, but it was also good to have the role defined, apart from the "family" and "friend" words which can both be triggering for me.  Ahhhh ... dear ... words ... they are what make us human ...

[Corny]

Good morning @nashy pear, I don't know about you but it was sweltering here last night. At 9pm it was still 27 degrees. 

I don't have anything original to add and I know I am probably beginning to sound like a feisty broken record but for me the word carer has a connotation of an adult or someone equal in age, and it does not account for the fact that youth are often carers.

The invisibility of children really worries me and nothing much has changed since I was a child. My sibs and I were carers from early primary school for my mother with schizophrenia, by 11 years old I did not have a working parent. 

There is no medical care or psychological care for child carers that addresses the power differential and the impact that this role reversal has on children. Not everyone's parents are abusive but a child carer can often grow up with feelings of unworthiness and that their needs do not matter. We become pathologically self sacrificing as we are not given age appropriate responsibility, and this affects all of our relationships.

Just my 2 cents.

Corny 

[TheVorticon]

I'm not going to answer all the questions, but I'm in a relationship with someone who's on disability for mental health reasons. In general I do not consider myself to be a 'carer' - to me that term connotes a more intentional decision to "provide care for" a person in a dynamic where things are unequal. Not just "care about" a person in an equal relationship.

It would slip into what I would consider 'carer' territory if I was picking up medication/supplies for them in lieu of them getting it themselves, accompanying them places when they need support with any challenges caused by the day's activities, making one-way sacrifices to make things easier for them when it's needed etc. These are all fine things to do if the intention is to be a 'carer' but I'm not that type of person and am not up for the role. I care about the person I'm in a relationship with and will support them when they're having a hard time, but I'm not interested in setting up a caretaker dynamic (even though that's what my natural pattern is to have happen - I have to work to avoid that because it irks the hell out of me).

[Teej]

Hi all 👋

i do have issues with the word carer for a number of reasons. 

1.    How comfortable are you with the term carer?

I think carer is a term that sounds like that is all you are, a carer. It feels to me like it changes the equality in the relationship. I concur with @TheVorticon on this one. I have a friend who I only want to have as a friend and not fall into a carer responsibility or relationship but there are times it would be helpful to have some support around helping her with her mh. In this case signing up to a carers forum would feel like I’m crossing the line of friend and carer. 

When I was unwell it was suggested that my adolescent kids access carer services. I struggled with that being their mum but also they struggled with that word and concept. I think if it had been worded more around would you like some tips and tricks to help mum out it might have been received better. For me it brings shame that my children were my ‘carers’. I’m not elderly or incapacitated which is the only time I think it’s ok for a child to be called a carer. It doesn’t mean they can’t help or seek help for themselves in dealing with me. I feel that is part of the relationship. 

2.Do you think calling the forum here 'Carer Forum' comes with challenges?
Yes. I struggle to term myself as a carer so it seems strange to write on that forum. 

3.    What other term do you identify or connect with? Why?

I do like Family, Friends and carers forum name. It feels more inclusive of all relationship and all kinds of care/support. 

Edited* I’m wondering if Family, Friends, Partners and Carers forum is too much of a mouthful. It feels inclusive of all relationships. 

sorry if this is a bit direct and abrupt. I mean no disrespect to anyone and it’s only my opinion.......and if I didn’t get it out now and fast I might have missed writing anything 🙄

[TheVorticon]

Thanks @Teej I think you worded that better than I did. I was in the same boat trying to figure out how to articulate what it is about the word that doesn't sit right with me.

[Eden1919]

@nashy  i dont like the term much. for me it implies that there is a level of being incapable and needing to be managed by another pseron. it implies dependancy, the term is often used with children and older people or people who dont have the ability to make decisions for themselves. to me it says "you're not fully competent". it also makes me feel uncomfortable because it kind of sets up a power dynamic where the carer ends up as the one with more of a voice because it is assumed that the person with the MH issues isnt fully able to look after themselves. it makes things unequal in a way. I prefer the term support person even though that still isnt perfect but it is more like the person is there to help you do it for yourself and has more of an independant connotation. 

i do get that there are some people with MH issues that need someone to do things for them so perhaps you couls say carers and support persons or something more inclusive but that also doesnt make it sound like people with MH issues need to be cared for like a child. 

thats just my opinion though. 

[Sherry]

@nashy  ... I think something with "Supporters" in it would be more inclusive than Carers. It would likely encourage more groups of people (such as friends of people experiencing MH challenges), rather than just official carers.  For those lucky enough to have good friends, they are often the best support for people with mental illnesses. 

In saying this, I do not personally have a problem with the existing 'carers' forum terminology either.  That could be because I have an "official carer" label however.  Perhaps without my official/legal role, I may not realise that the carers forum covers far more than just official carers.  Supporters forum, or something similar, may therefore be more appropriate.

Sherry