[speaker001:] You need help, but who cares? And who gives a damn about the people who do care? Let's find out. [introduction music]
[speaker002:] Maybe we should start by defining what a carer is. A carer, I suggest, is someone with responsibility for a child, or an old person, or someone with a handicap, or a chronic illness. There are professional carers as well of course, who are paid to care for other people, but this discussion is probably going to concentrate on the problems of... home carers. Now why did I say problems? Isn't caring a rewarding occupation? Well perhaps. And a hundred women will share their views and experiences in a moment. But let me offer you one figure to consider, one third of the population in Scotland is either over sixty five, or under eleven, or is variously disabled... how much care will they need? How much care will they get? And who's going to give it? It's a challenge that's been talked about all over world, but who's going to respond and how? Let's talk! Let's start with a vote. Are you, or have you been a carer? Button one for yes, and button two for no. And, there's a hundred here... sixty five... have been or are... thirty five, a third, not, or possibly I should say, not yet. Now, of those sixty five who would like to say something about their experience, whether it's, it's present or past? What are you talking about? Yes?
[speaker003:] Ten years ago I had four dependent relatives, I took both my parents and parents-in-law into the one house... the fathers are now both dead, and I still have both the mothers.
[speaker002:] Are you working as well?
[speaker003:] Er, I run a voluntary help line for other carers, and I've got sixteen hundred and fifty carers on file right across Scotland.
[speaker002:] Did you set up this help line yourself?
[speaker003:] I did, yes.
[speaker002:] When?
[speaker003:] Erm, about five years ago, nineteen eighty six... because, there was just nothing! I mean, I knew from my own experience that carers were not getting the help, they were not getting the back-up, so any sort of really good telephone numbers I had laid my hands on got sort of written away in a wee book, and I was lucky enough to come across an association that actually backed up carers and actually were willing to sort of, put their life on the line and say to me, yes, you have got rights and you need support and we are here to give you that support.
[speaker002:] Do you think things are better now than they were five years ago when you started your help line?
[speaker003:] Well, for me yes, because erm there are now things like the Independent Living Fund, things like that, if people fit into the right boxes and contact the right people, then they can get some sort of help... but I mean, it's still an absolute maze out there for anybody who doesn't have that sort of back up.
[speaker002:] Okay, there's one experience, we'll come back. Who else? Where, who are the other sixty five? What's, what's your experience? Yep?
[speaker004:] I was involved in setting up a charity called SNIP which is a Special Needs Information Point for parents and carers of children with special needs to get more information out to them about benefits or... help in any way.
[speaker002:] Would er th er, over here it was described as a, er er it's still a maze out there if you don't know where you're going, would you agree?
[speaker004:] I would agree er, that it's strange er once you start something, I mean people come up and say well we've got a whole information bank here and... other people have a whole information bank there and yet the ability of people who are caring, for adults or children, to get out, run round forty agencies and come home loaded with leaflets, pushing three children and a parent, you know is is quite difficult! And we found that er situating
[speaker003:] This is why phone works.
[speaker004:] in the sick childrens which we do
[speaker002:] Mhm.
[speaker004:] is ideal, it's easy, and it has to be much more available to people.
[speaker002:] So is the support there? Is it the communication system that isn't quite working... but the support is adequate if you can simply find it? Yes?
[speaker005:] I've been a carer for quite a few years now, until recently, when my grandmother died. Now, she had senile dementia, now the hospital helped a lot in the caring, but I didn't have time, or the energy, ha, frankly
[speaker002:] Mm.
[speaker005:] to go running around looking for help.
[speaker006:] I have looked after my husband for seven years, he had a brain tumour operation nearly eight years ago, and he's in a wheelchair... he can't walk, but his, after the first two years of caring for him, he's... become bright enough to do the Daily Telegraph crossword, and so he's er erm brain's alright. Well, I did it alone, just with the help of Crossroads, and the district nurse in, in the mornings, five days a week... and... really that is all the help I had, except that I get domestic staff myself, and any help that I need, I have to pay for. The doctor, my own doctor has been very good... and very kind and helpful, but... er, I know of no other support group other than Crossroads, who help people like me. And it is a day and night job. And my husband, although I'm only very small and under five foot, my husband is thirteen stone and six foot two inches, so moving him about has been a great problem.
[speaker007:] Well I'm a carer by choice. A friend came eight years ago for his tea, he's still here! He's multiple in disability, but we get help in Kilmarnock from Salvation Army, who take him during the day, FAB club where I go with him at night, and the hospital, Curtlingside now, who take him for respite... social and everything.
[speaker002:] Now plenty of people are carers by choice, and people want to look after the people who need care in their family, but th i, it's a problem isn't it? I mean, what are,wha what are the pro, inevitable problems that go with being a carer by choice? First of all, you can't work full time, even if you want
[speaker007:] I do.
[speaker002:] to. And what?
[speaker007:] I do work full time, I'm a community worker. But I, I have a need, I had a need, cos, and he fills that need... cos I didn't have a parents, and fills my need. He gives back a lot more... than we give him.
[speaker002:] Yes? Down here.
[speaker009:] I think when you're a carer, caring for a disabled person, in my own case it's... child, you're not just erm... it's not just a disabled child, you've got a disabled family, because the whole family's disabled... because of what holds you back with this one child.
[speaker010:] I'm a carer through choice, er, I took both my parents to... live with me... erm, when they no longer could cope on their own... and it totally changes your life!
[speaker002:] Yep.
[speaker010:] I took my parents when I, my son was two and a half, and I can honestly say that my son, I wasn't able to devote as much time as I would have wanted to give. You've not only... you're, you're not only yourself but you've got ki, your child to look, look after, you've also got who you're caring for, you've got their emotional needs as well, and you're emotional needs tend to... take a back seat, for want of a better... way of putting it. It totally changes.
[speaker002:] So did anybody else have that experience of of of caring for children and parents, or or parents-in-law at the same time? Yes?
[speaker001:] Er, I I had to care for my elderly parents when my son was two and a half and I had a six month old baby... and er, I would agree with the previous speaker, it certainly does change your life. My memory of those days was being tired all the time, waking up tired, going through the day [LAUGHTER] tired [], going to bed tired. I would say the thing that kept me sane during that period was the fact that I had a part time job, and erm... we were able to pay for some home help.
[speaker002:] Now this situation is multiplied thousands of times all over Scotland! Plenty of people are in this situation. Of course, we're all women here tonight,th, there are men carers as well, but would it be fair to say that the bulk of care responsibility falls on women... or or is that... is that unfair? Yes? Yes, I would think that would be true, because I think the woman is more intelligent and more capable of coping
[speaker001:] [LAUGHTER]
[speaker002:] with er... you know, the problem. And I think what's getting to me tonight, they're all saying it's a problem, and it's tired, I mean, so is life! Mm. It's part of life! You know, I catered for my father who was disabled... and I mean it was nay till I was... much older, oh he is disabled! He was my father. He was... you know, nothing wrong with him, till somebody said... oh it's got a disability! Oh, and you start thinking... what is disability? You've still got to get on with life! And I had five sons, a disabled father, according to the media, and er, I got on with it.
[speaker003:] It is part of life but er wha... sa so is death and so is schooling, and so is education, and and all these issues are social, social issues, they are only problems when there aren't the resources to help support people who need support. Now the community care legislation says that... carers now have a right... to ask for their needs to be assessed, I think that's very important! Many carers, I have heard say, time and time again, that they feel guilty even asking... they didn't even know they had a right to ask, well this legislation now allows people to ask, doesn't mean to say their needs are gonna be met, but at least it gives them a right to ask. It says that they have a right to have their own needs assessed, the wishes of the family and other carers... erm, have to be taken into account... carers have to be involved in drawing up local plans
[speaker002:] Mhm.
[speaker003:] for services, information has to be made available so that you know what sort of services are, are available, erm... on which to base a judgement about what so, what sort of erm, services you would like.
[speaker002:] Do you think it's working? The legislation, I mean do you think th th th this sounds like an improvement? Er, do you, do you think it is?
[speaker003:] Well it sounds like an improvement, but without the financial commitment and the political will then I'm afraid that the erm, the ideaology and the principles will all for nought. At the moment, the evidence is that the sort of money that's being put into developing new services is very tiny, five million pounds towards the specific mental illness grant, which actually isn't new money but... top slice from local authority money and then, erm directed
[speaker002:] Mm.
[speaker003:] particularly for mental illness and dementia services. Wo wo, it's less than the price of a cup of tea.
[speaker004:] Can I just say that my father who is eighty four, is caring for my mother... er for the past eleven years, and we keep sort of saying well is it not time... that she should maybe go into hospital? That's, we as the family.
[speaker002:] Mm.
[speaker004:] But dad's attitude is... your mother's looked after me all these years, it's my turn! Which I think's lovely!
[speaker002:] Lilian?
[speaker005:] Well I work for the organization Crossroads, and I think what I find in... in my contacts with carers... is that they need help in the way, and when they need it... however, our organization is restricted by lack of funding
[speaker002:] Mhm.
[speaker005:] because obviously, we can only help them when we have space.
[speaker002:] Now, Crossroads helps carers, it gives, it gives
[speaker005:] Yes.
[speaker002:] respite, or relief to carers, is that right?
[speaker005:] Crossroads exists to relieve carers on a very short term basis.
[speaker002:] Yeah.
[speaker005:] It can be weekly, fortnightly, monthly, or just occasionally on request... but... quite often we are finding that a person who's assessed as needing help weekly, but... all that we have got is fortnightly, and all of the time there are clients waiting for us to up the amount of help that we're giving to them... and, very much, it needs to be when it benefits them, and when it fits in with their lives.
[speaker002:] Mm.
[speaker006:] The lady, who founded the carers' help line, er, in the literature that you provided for the programme... was suggesting that the government should recognise that there are six million unpaid carers. I believe that the government do recognise that there are six million unpaid carers, er I believe that the government depend very heavily upon these six million people, and I do not believe that the government intend to reward them.
[speaker001:] Mhm.
[speaker006:] Erm,th, I think it's the government's ideal to promote the role of the extended family... which, to me, is anathema in the nineteen nineties. If we look at the look at the role that women play in our society today... they have a very heavy burden already placed
[speaker002:] Mhm.
[speaker006:] upon them. They're very often, er a worker... they're a wife, and they're a mother... and all that that contains... er, the basics, the shopping, the cleaning, the cooking... the decorating, they cut the lawn, they wash the cars, they pay the household accounts. If we go back socially to the days of the extended family, women did not have to play that role in those days, a women, a woman's place was very much in the home, looking after the home and not much else. And, quite frankly, I think that... that women these days have very little time in which to indulge themselves in their own hobbies and interests, and I think women should stand up and say to the government, no you will not inflict this responsibility upon us!
[speaker002:] There.
[speaker007:] Certainly, I'd I'd very much like to agree with what that lady said. I... I work for NUPE, and three
[speaker002:] Mhm.
[speaker007:] out of four of our members er, are women, and many of them are... both the paid carers, the home helps, the care assistants and so on, but also then go home to look after the young or the... er... elderly relatives or or disabled, and so on and... and as well as seeing, wanting to see far more... support in the community
[speaker002:] Mm.
[speaker007:] for people... who are caring for their, their family... we've, we've also said, that employers should recognise that people should be able to get, erm... some kind of leave occasionally from their work... er, perhaps ten days a year when they find the person they're looking after is is sick. All too often women say to me, basically they've had to fake a sick line themselves because their mother or their father
[speaker002:] Mm.
[speaker007:] was ill, but there was no official way... they could contact their employer and say, I need the day off because... I need to sort something
[speaker002:] There.
[speaker007:] out.
[speaker008:] We've not only got to say to the government, that you're not coping... you've got to say, if you're a mother, a worker and a wife, you've got to say to your husband, look, I'm not coping. You can't e expect a body... to cope with everything in your life. You say to your husband, help me! And they should relieve you of it.
[speaker002:] I do, well do husbands help? I mean, I was interested, a couple of the people who who were speaking earlier, Margaret, and in fact,th the two Margarets who... both said I look after, neither of you said we look after. Now, I don't know whether that's because i in your house there isn't a husband or a partner, or whether it didn't occur to you to say we, whether you always think of it as I... or whether he's out winning bread or... you know,wha whatever it is, but
[speaker001:] Well
[speaker002:] are are, do men, do men take the loa,a apart from this fabulous
[speaker001:] Yes.
[speaker002:] er... father of yours who's, who's, who's looking after... er
[speaker001:] Erm
[speaker002:] you mother.
[speaker001:] I couldn't have done it without... the help my husband gave
[speaker002:] Yeah.
[speaker001:] me. I mean, my husband has even at one point had to come into the bathroom, when I got my mother stuck in the bath... er, couldn't get her out, it was, it was him or the fire brigade,tha that was the choice, basically! [LAUGHTER] Erm, I'm not saying he was truly happy about having... I think he was quite embarrassed for my mother. But, no, my husband... has helped an awful lot, I couldn't have done it without him.
[speaker002:] Then what's your... up there? Yes?
[speaker009:] I nursed my mother who was blind and bed ridden for four years before her death. Now, my husband was a wonderful support to me, during that time! And I was sort of juggling, I didn't realize how much I was doing until... one day shortly after mother's death, a lady stopped me and she said has something happened to your mother? And I said, yes, she died. She said, I thought so, it's the first time I've seen you walking instead of running!
[speaker001:] Mm mm.
[speaker002:] Mm!
[speaker009:] And that, I... I was, my hus, during the time mother was ill, my husband took ill, now this is where authorities don't give you any back up, instead of sending him to hospital which was fifteen minutes by bus, I could have visited him every day... they sent him to the other side of the county... which only allowed a visit once a week, and meant I had to leave at twelve o'clock and get home at six!
[speaker002:] Mhm.
[speaker009:] Now... no nothing was done! The worse word you can say to authority is, I can cope, because they leave you to cope!
[speaker002:] Down here.
[speaker010:] My husband he... was very good, but he didn't take any... care with my grandmother, but he was extremely good about the house. He looked after Michael, my young son, he did housework, he even makes now, a good pot of soup, [LAUGHTER] he done [], better than I do! But, he took over most of the housework, whereas I was looking after my grandmother. I mean, without him in the back I wouldn't have been able to do it, but I always tell everybody I was the carer. [LAUGHTER]
[speaker001:] [LAUGHTER]
[speaker002:] Yes? Up there.
[speaker001:] We're still talking about men helping us, instead of expecting them to do it automatically.
[speaker002:] Are we?
[speaker001:] I think we are at the moment, yes.
[speaker002:] Is that, is that your experience?
[speaker001:] Yes, I mean I have a very helpful husband, but he's helping, he sees him himself as helping me rather than doing his share of it... without... having to ask... what help I need.
[speaker002:] Now, that's an interesting distinction! Do you think that's right?
[speaker001:] Mhm. Aha. Mhm. Yeah.
[speaker002:] At the same time, men usually have got full time jobs, as well! Well I meant I mean, if they're working full time and they are helping with the children in the house, I mean, they can't do much more!
[speaker001:] Well I'm working full time too
[speaker003:] I think they can!
[speaker001:] so
[speaker002:] I work as well! Mhm.
[speaker004:] I think erm, I don't men take a lot of responsibility. I mean, I don't want to er, betray my partner here but erm, I mean he does his share but he doesn't do his full share. Erm... I think that erm... men don't like to take on women's work because... it's erm
[speaker001:] Ooh!
[speaker002:] [LAUGHTER] Ooh []!
[speaker001:] [LAUGHTER]
[speaker004:] the hours are too long, the hours are too long and the wages are really bad,th really bad
[speaker002:] So that's, that's er, the women's work is is work that is, the hours are too long, and the wages are really bad?
[speaker004:] Yes!
[speaker002:] That's your definition?
[speaker004:] Well I mean who'd want to take that on, you know! I mean
[speaker005:] it's unpaid.
[speaker004:] Well okay it's
[speaker005:] and invisible.
[speaker004:] it's badly paid, yeah alright, it's invisible
[speaker005:] Yeah.
[speaker004:] for.
[speaker001:] They don't take it on, take it on full time.
[speaker002:] Up there.
[speaker004:] Mm.
[speaker006:] It actually takes the two of you to pull. I've been listening, Sheena, to them talking about... carers, now, since time began women have always been carers. I mean, when you get up and, I believe that it's, a children's duty to look after their parents. I looked after my mother... I was the youngest of our family, and I didn't consider that... I was doing something unusual, it was my duty.
[speaker002:] Mhm.
[speaker006:] And that is why,th with the government talking about, and they're talking about authority... why should they be looking for money from anywhere, when after all, the youth of today are the pensioners to, of tomorrow, and it's only our duty to look after them.
[speaker002:] Mhm.
[speaker007:] I would have to say that social conditions have changed a great deal today, going back to what the first
[speaker002:] Mhm.
[speaker007:] on my left said earlier, and... wo wo women have a tendency to say yes to everything that they can do, just because they can do it, and they know they can but they tend to heap up far too many obligations, and that causes... many carers
[speaker001:] Mm.
[speaker007:] er, to succumb to... health problems, exhaustion, er emotional problems and so on.
[speaker002:] Hazel?
[speaker008:] My er, circumstances are entirely different, I am the person who's being cared for... and my husband died in nineteen eighty seven, and my son in nineteen eighty eight and I was left with my young son, and he looked after me on his own, and then my daughter who li, I was living in Ireland, my daughter lived in England, and she decided it wasn't good enough that it should all be left to him, so... we had a long talk and we discussed it at length for two weeks at Christmas, and... then they all moved Sou, over here, we got a house in Scotland, and I'm looked after by my young son and my daughter, and since then a year ago my daughter got married, her husband moved in and he looks after me as well, so I'm looked after by three young adults.
[speaker002:] I wonder how many of you are now, or expect to need care? Button one for yes, and button two for no? It may take a bit of imagination for, for some of the, some of you but... what do you think? Do you think you're going to need care? And it's something you might think about as well, sitting at home, do you think you're going to need care in due course, and if so, where's it going to come from? And er, where's the money gonna come from? And who's going to look after your carers? Fifty four of the people here think they're going to need care, forty six are going to... stride it out independently to the end. Erm... very briefly, the fifty four of you, who's gonna care for you... do you think?
[speaker009:] I've got a young son
[speaker002:] Yep?
[speaker009:] he's erm... twenty three at the moment, I've got arthritis, sometimes I'm in a wheelchair, sometimes I'm alright, and he says... don't worry mum I'm there to push you around... and I'm quite heavy!
[speaker001:] [LAUGHTER]
[speaker002:] Yes?
[speaker010:] I I on picking up on one thing that was said
[speaker002:] Mhm.
[speaker010:] earlier that, the hardship, I mean i it's okay for some people who have the money and will not feel
[speaker002:] Mm.
[speaker010:] the hardship. I know, er... a gentlemen, like yourself, who's looked after by his young son, by a younger son anyway, and he... he's given up his work... to look after his father.
[speaker002:] Well, in fact, eighty percent of full time carers give up work... to
[speaker010:] But
[speaker002:] look after whoever it is they're looking after.
[speaker010:] we we, we were hearing from Jenny about the government, but... we we must look into other parties... I mean there's a general election going to be coming off soon, we, we as carers should be looking into who... is going to benefit us.
[speaker002:] But it's not just we as carers, or your as carers
[speaker010:] No!
[speaker002:] it's anybody... who cares sufficiently about
[speaker010:] It's anybody who needs help.
[speaker002:] Yes?
[speaker001:] I'm an ex-carer, and I looked after my aunt for three and a half years, and could I say that it's not all negative... although it times you could scream! Really! I mean, at times yo, I can, looking back now I can say that I learnt a lot. Well I sa, I mean I took her on to look after her and I didn't think there would any problem
[speaker002:] Mm.
[speaker001:] about it, but after a while... ah, I... you know, things got more difficult as she deteriorated, but th... I did learn a lot.
[speaker002:] Mm.
[speaker001:] And now, I I almost felt empty when she died, and I didn't have anybody to care for that really needed me all the time... so I I, wanted to help out at a local dementia centre to try and make up for it... and to pass on
[speaker002:] I think that's
[speaker001:] what I've learnt.
[speaker002:] I think that's a very good er... point
[speaker001:] Mm.
[speaker002:] and I, I mean I, I think we've heard earlier a lot o, people who, people who've who have become carers because they need that, they need to care for somebody, and they want that dimension in their life. What's also come out very strongly... er, in this programme is is... that it's a struggle for a lot of people, both financially, and in terms of juggling time and the multiple demands that particularly women have, in trying to care for young people and old people to the point where women may spend their entire lives between, between twenty and sixty looking after somebody or other. And maybe that is... part of... real life, maybe that is a fact of life... that women have to take on board, but perhaps men have to take it on board a bit more as well. Can we have a couple of final comments, cos we're gonna have to draw to close. We've heard a tonight about carers... erm, not knowing about Mm. benefits, not knowing where to find out about benefits, and I think it's right to say that benefits agency staff are there to give information and there is a And that's what you are? Yeah. There is a freeline service which... carers, I think a lady said earlier, over the phone is the best way, there is a freeline service and I think it would be a good idea for carers to take advantage of that, if we can help, we will. I, it's unfair ask you this, but do you think it's sufficient... the care that's avail, the the help that's available? Erm... that is difficult for me to answer but obviously [LAUGHTER] Right! Fine []! I'm going to implement [LAUGHTER] [LAUGHTER] Yeah []! government policy, [LAUGHTER] not to comment on it []! Right. Yes?
[speaker004:] I'd like to end on a, on a slightly different note. I would like to look at the people who are being cared for, the people that we're talking about, are the elderly, quite often these people have lived through two world wars and given up their young married life, they have brought up their children through the bleak days of the general strike, is it right that these people have to suffer the indignity of charity hand-outs? The eve of their life should be free from worry, and stress, and anxiety, and wondering about... who will bury them, and who will pay for it. I I think it's quite wrong... er, the way the elderly are treated, that they
[speaker001:] Yeah.
[speaker004:] have to rely on charity hand-outs.
[speaker002:] As ever, we finish with er... a lot of things touched on, lots more to talk about. I hope you've heard something that'll make you think, and think positively and perhaps act positively. Goodnight. [closing music]