Interview 24

Age at interview: 61

Age at diagnosis: 57

Brief Outline: Diagnosed with chronic obstructive pulmonary disease in 1999. Treated with flixotide and serevent inhalers, and on a nebuliser four times a day.

Background: Nurse (retired), divorced, 2 children

She would like access to hospice care or something similar when she needs it.

I'm living on my own. As I say my daughter is away and the one thing I do not want to have to do is to burden my daughter. Not that she would look at it with as a burden, I know, but she's got her life and her family. Living here on my own. I would until I really couldn't. 

My other daughter... no way could I ever go; not that... I think she would try and she's... has problems of her own and... we just don't really get on if we're together for a long time. Short spaces of times and we're fine but not for a long time and so that could never be a consideration. 

I have a very good friend, a neighbour who comes in and helps me now and does a lot of work for me but again she's older than I am and there'll be a time when she won't be able to do it either and ok I've got church people but you can only put onto them, or not put onto them. I mean people are willing to help but when it becomes sort of day in day out it's really too much to ask them to do it, so that's why I am looking for either a rest home that... actually nursing home that would... actually deals with, that specific deal with life threatening diseases and knows how to cope with you or a hospice that one can go into, yes.

She is getting enough support and personal care from social services at the moment.

Can you tell me what the home care involves?

Yes. Home care. If you think you need home care then you've got to get either referred by your doctor or another social worker helpline and they will come out and see you. But I was referred when I came out of hospital after being diagnosed COPD [chronic obstructive pulmonary disease], and I was looked after with what they called Hospital Social Service for 3 weeks and when she'd finished with me she referred me over to the social services and said that I needed this care. And so she filled in forms and what I needed, and yes, I'm very lucky. 

Personal care is anything from helping you to wash, or bath or shower, washing hair, dressing... If it's sort of just normal creams then they will put creams on but if its any sort of dressings then of course the district nurse comes in. But that is basically personal care and they look after your bathroom. They just make sure your bathroom is tidy and that your kitchen... the hygiene part of it is clean 

And do you get all these sorts of help?

Yes. And they also will get my breakfast for me because after I've personally have had a bath I'm so exhausted. I would have to sit here for an hour before I could really get going and then with the lifestyle that I have I would probably have to go without it so they get my breakfast as well.

Do you get Meals on Wheels [now called Meals at Home]?

No, I don't because I like cooking for myself. I have a chair that's out in the kitchen so I can sit and do my vegetables and that. And no I haven't got to that stage, yet thank goodness.

Do you feel you are getting enough social services support?

For me, at the moment, yes I do.

Suggests that when applying for Disability Living Allowance people should indicate what they can...

We've just had another break and we were talking about conditions for getting DLA [Disability Living Allowance] weren't we? 

That's right yes.

Could you just clarify that?

Yeah. As I was just saying the DLA is hard to get and if you are able to walk... without... too much pain for more than say 100 yards then they probably wouldn't allow you to have the mobility, but for care, if you need help basically for everyday living perhaps you won't be able to prepare your food or you may have... 

There's a whole stream of questions in there to come up to that criteria you must really read or get somebody to come and help you with the forms. Try not to fill in anything yourself because a lot of people will put down their good days, and good days normally are not as often as bad days and so one has to really think about what your putting down and basically you've got to put down your bad days. How you are on a bad day. Whether you can cope with things like this every day or not, so I would say, yes but you know get somebody... go and find an advocate. Go to... they do have a helpline number on there but do try and see if there is somebody who will come and help you fill in your forms. 

CAB [citizen's advice bureau] will probably help you and there are organisations around that have advocates that could probably help.

Advises people to consult their doctors when depressed and to keep as active as possible.

Well I think everybody is individual and it takes you differently. All I know is that when you start to feel suicidal you've gone down so low that its very hard to try and climb back up and I think if anybody does start to feel exactly like that then they really must go to a doctor and get help.  

I don't think medication is the be all and end all to help you with depression; it is talking to people who understand what you're going through and I think groups... people can help you on that. Especially people perhaps who've gone through similar and come back up and out you know. I've not always been positive. 

Even now I still have my down days but I I've now learnt that they are my down days and sometimes I'm very depressed but again, just like my physical illness, I just go with it. I don't worry about it. I don't worry anymore because having the treatment I had when I had my breakdown I keep going back to that and OK I could be down I think to myself 'you've got to do something, you really have to go do something' because it's like a circle. 

If you go down you could stay down and if you don't do anything you go wrong. You've got to try and break that circle and if somebody says, 'Why don't you go out for a walk'  and you often turn round and say, ' I don't want to go' , or, 'I cant be bothered.' that's when you've got to talk to yourself very hard and say 'ok', because if you can keep your mind active enough to do something, even just go and sit in the garden or... 

I'm not saying at that point you feel like doing any reading or anything but just giving yourself a little bit of exercise just to go out even in a wheelchair to go out to feel the breeze on your face and see the sun, when we get it, we've had a lot of that just lately! But even the rain, go out and just look at shops. Something might just click in you to make you feel just that little bit better. You certainly will be better than staying in and not doing anything.

Discusses the complex issues involved in euthanasia and believes that God can help.

We talked about all the discussion that's gone on in the country about euthanasia and assisted suicide?

Yes

Well I wondered what you're views are on that? 

Well as I said in the break I've got very mixed feelings on that subject being a Christian person we are told that life is very special and God gives life and God takes life away, but I also believe that there are times and there are cases where I believe that God would not want that person to continue. 

Do you mean because of the suffering?

With the... I was just going to say, with the suffering and the... what's the word I want... quality of life which they probably wouldn't have any at all. So I don't think that God would frown upon that happening but of course I mean euthanasia goes for all sorts of things and its not just for terminal illness or anything like that and I think that you've got to be very very careful if if this was made law. Legalised. If the quality of life is such that somebody could live it, all be it very frustrating and then I would, don't think I would like to see euthanasia used in that context. If the quality of life is virtually nil and they have got such an illness diagnosis handicap or whatever, reluctantly I think I would say yes.

You see I mean how do you measure it?  What is quality of life for one person is not quality of life for somebody else, and I do wonder sometimes whether you know somebody who does suffer like that perhaps are thinking more about their carers than themselves but they would never let on because they would never want their carer to know. 

It's a big ball game.