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IN TOUCH – Blind carers, Where to get help when you lose your sight

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TX:Ìý 24.04.2018Ìý 2040-2100

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PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý CHERYL GABRIEL

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White

Tonight, we’d like to start with a couple of conversations.Ìý First, who cares for the carers?Ìý An estimated 50,000 visually impaired people are looking after someone else.Ìý And the things you didn’t know you didn’t know.

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Clip

One morning I woke up and one of my eyes had failed quite miserably and you realise then – ooh I can’t do the things that I used to be able to do but where do I go to get the help that I need to be able to do or try and do the things I used to be able to do?

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White

We’ll be starting a list as part of a fond farewell – all will become clear later in the programme.

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But first, however capable we may think we are blind and partially sighted people are often portrayed as in need of looking after.Ìý But a recent RNIB survey says in fact more than 50,000 of us are looking after someone else.Ìý The most obvious example, frequently featured on In Touch, is parents looking after children.Ìý But we’re often the ones doing the caring for parents, older relatives, brothers or sisters.Ìý People like Jean McKeegan, now she’s been taking care of her father, George, full-time for a couple of years now.Ìý Well she got in touch with the programme to find out how other people coped in this situation.Ìý This caught our attention, so reporter Tom Walker has been to see how Jean, herself, is coping.

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McKeegan

Dad!Ìý This is Tom.Ìý Tom has come from Radio 4 to have a chat with us.

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Walker

Are you having a nice day?

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McKeegan

Well dad is 95 years old and he was a little bit distant when it came to remembering things about five, six years ago and they realised that he was actually in the process of being diagnosed – having dementia.Ìý And now his memory is only seconds.Ìý So, it’s very difficult to leave him unsupervised.Ìý With regard to dad’s medication I have been given the blister pack.Ìý When I open up the pack on the cover it has all of dad’s medications, so if anything happened to me – if I had an accident or something – it’s all listed here and someone could literally pick up the pack and know what to give dad.

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Walker

How’s the medication organised?

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McKeegan

The blister pack is arranged each day, you have a line with the morning, breakfast, lunch and dinnertime pills.Ìý So, you just go down the blister pack each day and start a new line.

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Walker

And that’s worked pretty well for you hasn’t it.

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McKeegan

That’s been absolutely marvellous, it has saved me about half an hour every day trying to sort out the medication from little boxes to just pressing a blister and that’s it.

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I also have to deal with his personal hygiene.Ìý As far as showering is concerned we have carers who come in to do that for me because that’s a little bit more difficult and not the best thing to have to do with your own father.Ìý And the other things that he has to be supervised on is obviously his meals have to be prepared for him, he can’t make a cup of tea or do anything in the kitchen because he wouldn’t remember where things were.

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Okay, I’m in the kitchen now, so firstly I want the fridge where I keep my bread, I don’t have to constantly run out to the shops every day.

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Walker

Can you leave your dad if you do need to run out to the shops?

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McKeegan

Not really, no.Ìý I make sure there’s always someone here if I’m going out.Ìý

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Walker

Your kitchen’s very organised here.

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McKeegan

Yes, has to be.

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Walker

Like the rest of your life.

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McKeegan

Yes, the whole – my whole life is now extremely well organised.

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Penfriend talking

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Walker

That’s the sound of the Penfriend.

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McKeegan

Well what you have is you have a stubby shaped pen and I use it in conjunction with my diary most of the time, which means that I can keep all the appointments up to date.Ìý So, I’m into April and I will have stickers on that page with all the appointments.Ìý Here we go:

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Penfriend talking

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Walker

For you, as a totally blind person, there must be certain activities that maybe you’d like to do with your dad that you’re unable to do.

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McKeegan

Yes, there’s lots of things I would like to do with him, I would like to do crosswords with him but that’s not possible.Ìý I do have dominos with tactile dots on them, so I can do that.Ìý However, it’s difficult actually to find the time to concentrate on activities like that because he is very slow.Ìý And there are so many things to do round the house and dog to deal with, make sure she gets her exercise every day.Ìý It’s just challenging.

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Walker

So, not only do you have to deal with your own challenges of being visually impaired or totally blind but you also have to deal with the fact that your dad often forgets that you’re totally blind as well.

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McKeegan

He does, he forgets all the time, because he will ask me to find something for him or he’ll say what colour is this, just lots of questions that indicate he’s totally forgotten that I can’t see anything.

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Where’s your walker, did you take it over with you to the chair?

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Mr McKeegan

No, that’s right in front of you.

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Walker

How do you monitor what he’s doing because presumably you have to be pretty aware all the time of what he’s up to?

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McKeegan

Yes, it’s just a case of listening, the whole time I’m listening to what’s happening.Ìý Fortunately, my house is slightly open plan, so if I am upstairs and he’s doing something downstairs that perhaps I could be concerned about I can hear and I will come downstairs and find out what’s happening.

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Walker

Did the authorities have any concerns about the fact that you are a totally blind carer?

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McKeegan

Well if they did they didn’t say too much about that.

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Walker

Is that because – is that because you were probably saving them some money?

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McKeegan
Possibly because I was coping as best I could.Ìý And yes, I didn’t have to put – I did say several times that if I didn’t have certain things then dad would have to actually be in a care home.Ìý Whereas, if I had certain pieces of equipment, certain help, then I could care for him at home.

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Walker

So, being fairly assertive but also persuasive is always a good plan.

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McKeegan

Definitely assertive and also know what you need.Ìý If you come across something, you think oh I wish I had something or other to help me out with this then just ask and it might be found for you.

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Walker

Now when your dad moved in you approached the local authority, what was their response?

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McKeegan

Social services – their response was we can’t do anything for three months.Ìý I was very upset.Ìý And I did try the doctor, I tried everyone to try and get an assessment brought forward but it wasn’t possible.Ìý If you weren’t really strong you’d be inclined just to give up and you would say no, sorry I can’t cope, my relative has to go into a care home.

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Walker

How could social services improve the service that they provided you?

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McKeegan

Well they could certainly take into account everyone’s individual situation and work according to that.

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Walker

Have you come across other carers in a similar situation?

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McKeegan

No I haven’t actually, no one.Ìý In fact, that’s why I telephoned In Touch, to ask if anyone else in the same situation could share with me their experience and we could perhaps liaise with different problems we might have.

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White

Jean McKeegan.Ìý Well it sounded to us as if Jean is doing pretty well already but as she said, she’d very much like to know what tips others in a similar situation might have to pass on.Ìý We’ll be giving you some details of how to do that at the end of the programme.

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But it was another conversation, started by columnist Mike Lambert, which has also got listeners thinking.Ìý Mike described what he’d got out of an experience you might think would have little to offer someone who’s blind or anyone else for that matter – a huge whale sneezing in your face.Ìý In the event, dare I say, it was an eye-opener for Mike and it prompted this from Dave Williams.

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Williams

Why do so many of us blind and partially sighted people bother with traditionally visual pursuits?Ìý How do we shape our expectations about what’s going to be possible and can the risk of complete humiliation ever really be avoided?Ìý

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Last summer I took my family to the Caribbean to witness a total solar eclipse.Ìý I’ve been fascinated by astronomy since I was a boy.Ìý The Italian astronomer, Galileo, famously lost his sight in later life but continued to make important scientific contributions.Ìý As the day of the solar eclipse drew near I felt increasingly self-conscious.Ìý Would the other eclipse watchers be pointing and exchanging a look – what on earth is that blind guy doing here.Ìý I realise now they were probably much more interested in enjoying their own holidays.

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As with many blind people I do have a small amount of residual light perception, so I was hopeful that when the moon passed in front of the sun I should be able to make out the sky darken.Ìý And I did.Ìý And I also felt the temperature drop.Ìý I heard the cheers of the other eclipse watchers, the enthusiastic descriptions of the changes in light as the shadow of the moon swept over us.Ìý And my sighted nine-year-old son’s fear of the dark turned to awe as the eclipse unfolded.

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I treasure these shared experiences, often the descriptions are natural, unforced, enthusiastic, emotional and can be inadvertently inclusive.Ìý Being there, close to the excitement of others, brings an experience alive and makes it feel real.Ìý It’s the difference between hearing that your team won or being at the match.Ìý For me, sometimes, doing the really big things like moving house, organising a wedding or taking the family abroad can feel more manageable than getting across a busy main road, cooking a three-course meal or choosing what to wear.

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People losing sight are often told to contact RNIB, make yourself known to your local voluntary association and register with the local sensory impairment team.Ìý These things are important steps on the rehabilitation journey and they are but when you’re ready also make contact with other blind people.Ìý We’ve got tried and tested tools and techniques that enable us to manage in all kinds of situations and the chances are whatever it is you want to do there’s probably a blind person somewhere who’s at least tried it.Ìý As well as mobility, independent living skills and access to information, all of which are important, we need to be talking more about attitudinal barriers.Ìý The way some sighted people pull their little darlings back when the scary blind man comes near.Ìý The way some sighted people appear to lose the power of speech when I’m searching for a seat on the bus.Ìý Or the way even close relatives will sometimes say, in slightly hushed tones, he’s doing really well, you know, with his eyes and everything, oh and his wife’s the same.

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I’m blind and I’m genuinely okay with that.Ìý The issue is that other people are often uncomfortable around blindness.Ìý And allaying those fears is tough.Ìý But we could do a lot worse than getting out there and showing that doing anything that is truly rewarding often involves an element of risk.Ìý

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It’s okay that sighted people don’t instantly understand how I live as a blind person.Ìý And if they don’t deal with my blindness well on the first meeting, well every day’s a school day.Ìý And yes, it can be exhausting.

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White

David Williams.Ìý And if you’d like to add to that or give your views we’d certainly like to hear from you.Ìý And for reasons which will become clear our own Cheryl Gabriel, who’s been producing this programme for more than 20 years, that really is true, has chosen today to start an In Touch conversation of her own, prompted I think, Cheryl, by a request that you got from a friend.

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Gabriel

That’s true and that friend is sitting here with us now Peter, Jane Moore.Ìý Hello Jane.

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Moore

Hello.

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Gabriel

Jane has been recently diagnosed with Macular Degeneration, the same as me, although I’ve had mine a bit longer, and Jane you contacted me for help.

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Moore

I did.

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White

Yeah just explain Jane what you felt your situation was.

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Moore

Well I have had and I still have Macular Degeneration but I’ve been managing with it quite well until one morning I woke up and one of my eyes had failed quite miserably and you realise then – ooh I can’t do the things that I used to be able to do but where do I go to get the help that I need to be able to do or try and do the things I used to be able to do.Ìý Fortunately, I have a Cheryl in my life who has helped me enormously by pointing me in the right direction with things that are available out there to help people like me.

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White

So, you put this, Cheryl, I think all in one place, which was perhaps the key thing, Jane, you were getting stuff from all over the place, but…

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Moore

I was.

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White

But this was concentrated in one source.

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Moore

It was, yes, and you really do need to have that because obviously it’s difficult to read, it’s difficult to receive letters, emails, etc. etc., so just having one source of information to help you makes a big difference.

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White

So, Cheryl, what was on this list?

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Gabriel

Well things like the obvious really, I mean PIP…

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White

Which is Personal Independence Payment and that’s a benefit that people get to compensate them for the extra costs of disability.

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Gabriel

Indeed.Ìý And then I put down the Partially Sighted Society, which was Anita Plant and you went to see Anita didn’t you?

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Moore

I did and that was really worthwhile doing because I came away with some great kit that’s specifically designed for me.

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Gabriel

The Disabled Persons Railcard, that was the next thing, which gives you amazing discounts.

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Moore

It does and I’ve used it, so thank you for that.

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Gabriel

That’s alright.Ìý And then the Freedom Pass, that was there.

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Moore

The Freedom Pass, I’m just in the process of applying for that, but it does make a difference in terms of travel costs.

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White

And that’s the thing about this, there are so many things.Ìý I immediately want to add things like, for example, yeah well that’s fine for trains but if bus travel is your thing there are passes which give you free travel in your area, it varies from local authority to local authority but that’s the basic principle.

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Gabriel

And then my favourite one is the theatre concessions because not everybody knows about that and obviously not everybody wants to go to the theatre but if you do you can ask to go on a theatre access list, so you contact the individual theatres and they’ll put you on their list and then you can ring up and book tickets and basically you get a half price ticket because you get a free ticket for a companion.

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White

If you’re into sport there are things like a lot of football clubs, for example, offer concessions, typically you would have to pay but a companion – they would go free.Ìý And I had the privilege of seeing my side stuffed for only £20 when it could have cost me £60.

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Gabriel

Bargain.

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And also, Pete, just one other thing, Eleanor, the editor, mentioned that you can get a concession if you go to the zoo as well.Ìý So, it’s really just worth asking if you’ve got the nerve – just ask anywhere that you’re going, whether it’s a gallery, an exhibition or wherever, and they’ll probably do some sort of concessionary entry.

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White

And you could go on adding to this ad infinitum, which in a way is what we want to do isn’t it really Cheryl.Ìý Just explain your concept.

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Gabriel

Well when Jane responded to the email so positively and sent me this amazing bouquet of flowers I thought to myself this is important information and maybe it would be useful for other people to have it in one place as well.Ìý So, if we could possibly put the information on the website in the form of the email that people could download and have it if they want to and also add to it if they have anything that’s of use that could be included in the email for other listeners to share.

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White

And for really to try and give them the same sort of help at an early stage that Jane got, that’s really the idea behind it isn’t it.

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Gabriel

It is, it is.

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White

You’ve chosen today because this is your last programme as producer, which I can’t quite believe.Ìý It is more than 20 years, I can honestly say never a cross word in that time.Ìý Few bits of creative tension in terms of – as we decided how to do the programme but it’s been an absolute pleasure to do.Ìý What are you going to do with your Tuesdays?

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Gabriel

Well of course I’ll be listening to In Touch Peter.Ìý But apart from that I’ll be spending more time with my camera.

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White

Which is a great enthusiasm of yours.

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Gabriel

It is, it’s a passion.Ìý So, watch this space.

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White

Well hopefully they’ll be lots more Jane Moores.Ìý Jane, thank you very much for coming in.

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Moore

Thank you.

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White

And very kind of you to send Cheryl a bouquet, I’ll be expecting one after the programme.Ìý I should say In Touch will go on, somehow, before.Ìý It will go on being listener led, so if you’ve got anything to add to Cheryl’s list or you’re a visually impaired carer, do get in touch with us.Ìý You can call our actionline on 0800 044 044 for 24 hours after the programme – heard this before I’m sure – you can email intouch@bbc.co.uk or you go to our website, from where you can also download tonight’s programme.Ìý From me, Peter White, and for the last time producer, Cheryl Gabriel.Ìý Glad we didn’t have to do the whole programme in synchronised speech.Ìý Goodbye.

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