Dissertation interest and feedback

[Guest]

Hello everyone,


First of all I can i just take this opportunity to say, that just from browsing through this website, I've found all your stories so inspiring. You are collectively the strongest group of people I think I've ever met, your determination to keep caring even when obstacles are thrown at you is remarkable, you're all truly amazing people.

I'm currently conducting research into my undergradute dissertation. It's a matter very close to my heart as I and three of my close family friends are family carers, one looks after a mentally ill mother full time whilst his dad works, another cares for his brother with severe Autism, and my best friend cares for her sister who has DS. I care for my aunt who is single and lives on her own, and is physically disabled. I know they've all had personal struggles and feel sometimes they have to limit their activities e.g. don't feel comfortable walking in certain parts of the community with the person they're caring for as they are verbally assaulted. Equally, due to not qualifying for different allowances, it means one of their family has to be a full time carer.

The reason I am posting, is to get an insight into the real everyday experiences of caring. Through my research, there is a lot of literature surrounding the discrimination experienced by disabled people, but there is a distinct lack of literature surrounding the discrimination experienced by carers. So if you feel you could express your views on the following questions I'd be everso grateful.

- Do you feel supported within your community, or excluded by them? In what way?
- Do you feel the appropriate short break services and respite care services are made clear and available to you?
- Do you feel financially supported by authorities, and feel all your options are made available to you?


Thank you for taking time to read my post, I really hope I can offer support on this site to as many people as possible.

Best wishes



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[tangentc]

Hi sbegg,

Great you've got an academic interest in us carers... I do research myself, so I am duty bound to help Please forgive the tone, as the questions incite some emotion.

1. I feel neither supported nor excluded... more 'invisible' or 'forgotten'. You talk to people, but as time goes on, you're forgotten. I feel they don't mean it - how would they know what's going on in my life? There are times when months can go past and no-one knows what you're doing. They neither exclude, nor support.

2. What services are these? The only one I managed to arrange was via a charity locally. As far as I know, there are none of these services apart from the elusive 'respite care' that social services offer after you jump through hoops for minimum six weeks. So that's a 'no'.

3. ??? LOL This could be why you have no answers... financially supported, well, yes, 53.90 a week, plus Income Support top-up, really doesn't scratch the surface, particularly when some carers end up in the situation after leaving very well paid jobs. With HP and other debts from our previous lives, no, we're not well supported at all. As to 'all your options made available', again, no, options have to be hunted out like fox on a foxhunt...all without the dogs and the horses, while being blindfold! And more than likely, there's no fox either.


Lina xxx

[joyhibbs]

Hello back, sbegg and thanks for posting.

Yes, I am excluded. I care for my mother 24/7. She receives the higher rate of Attendance Allowance , which is what you get if you need care day and night. I get no help from any outside agencies. I help my mum eat, I bath her, help her dress, cook, and in effect do everything myself. I'm sure I'm not unusual.

In terms of discrimination and exclusion....I find, that, when I take my mum out around my local area, the retired people (who I don't even know) will often smile and say hello. People my own age ignore us. I think I make people my own age uncomfortable, because they perceive what I am doing as 'not the norm' for a person of working age. I am definitely considered quite unusual by neighbours because of the choice I've made (to give up work to care for mum). It doesn't appear to be considered 'unusual' in a good way, except by older people.

In terms of discrimination in the workplace, that surely exists and has been proved. I experienced it when I tried to seek funding for a community project, and was asked what else I did apart from the project. When I explained that I care full-time, I was asked how they would be able to rely on me to be there....what if I had to be called away to care for my mum etc. Needless to say I did not get the funding from that source.

I have also noticed that I am perceived as less intelligent, and people do talk down to me now. On other occasions people make the assumption that I can't read or write (not linked to intelligence, I hasten to add). I wonder if other carers agree? For example I went into the Jobcentre (having been turned away twice because they said they can't give jobseeking advice to carers - which is incorrect) to ask how to raise the issue as a complaint. They made the assumption, when I told them I cared full-time for my mum, that I would need help with writing on the form, and that I couldn't write it myself. It was a very interesting experience.

All the best.

[Catja]

Hello everyone,

Hello Sue,

- Do you feel supported within your community, or excluded by them? In what way?

Forgotten and/or excluded. there's so much that I just can't join in with because of the time of day it takes place, or the fact that it requires a regular commitment and regular attendance.

- Do you feel the appropriate short break services and respite care services are made clear and available to you?

I feel that, were there something appropriate and available, I would be aware of it by now - I have looked, I have asked repeatedly. However, there is no appropriate respite etc available in this area for a person who is neither a child, nor elderly, nor dying of cancer. The same goes for the carers of such people.

- Do you feel financially supported by authorities, and feel all your options are made available to you?

Financially supported in so far as my caree and I have been helped to claim our benefits, but that's as far as it goes. All what options?

FWIW I was recently contacted by my old polytechnic (trying to raise funds). The caller was so dismissive when I said that most of the time since my graduation I'd been a fulltime unpaid carer for my (now) husband, that I found myself bursting into tears for a few days after it. And it takes a lot to make me cry.

[Scally]

- Do you feel supported within your community, or excluded by them? In what way?
I feel in total charge of my situation and manage my relationships with my community according to my own wishes and preferences.
- Do you feel the appropriate short break services and respite care services are made clear and available to you?
I feel empowered enough to locate that information and act as a care broker for my caree without being spoonfed by someone else, whether they are good, bad, or indifferent.
- Do you feel financially supported by authorities, and feel all your options are made available to you?
Yes, but only because I know my rights and am willing to do my homework first

[joyhibbs]

Excalibur - Do you think that your (admirable) self-confidence stems from the fact that you also work as well as being a carer and that feeds your sense of confidence and also makes you feel you have a greater sense of being in control? I care full-time for my mum and since giving up work (in order to be her carer) I feel I have, to some extent, less of a distinct identity within society, and feel more excluded.