Jean

Age at interview: 80

Brief Outline: Jean has been in pain from ankylosing spondylitis since her twenties but feels she copes with it well. She has also had a stroke and has diabetes, atrial fibrillation and kidney disease, which give her a mix of other symptoms including incontinence, breathing problems and immobility.

Background: Jean is widowed with three grown-up children. She is a retired homeopathic practitioner. Ethnic Background: British.

More about me...

Jean is an academic historian and homeopathic practitioner of long standing. She was diagnosed with ankylosing spondylitis in her 20s. She was in a wheelchair for two years “but I’ve got myself back on my feet and got walking again.” She had a subarachnoid haemorrhage (an uncommon type of stroke caused by bleeding on the surface of the brain) in 1998 that needed surgery and she was left with weakness on one side of her body and walks with sticks or uses a wheelchair. She sustained heart muscle damage after repeated resuscitation attempts, and now suffers from angina and atrial fibrillation. Jean still experiences “periods where I bleed in my brain” and has also developed diabetes and kidney disease. Whilst her heart problems would normally be treated with anticoagulants, she is not able to take the full dose because of the risk of bleeds. Jean started using oxygen two years ago and cannot now get through the night without it.

At one point Jean was considered to be terminally ill and received 22 hours of care but that has now been cut down to 12 and a half hours, which means she can no longer attend an exercise pool. Carers only provide “basic care,” and not housework. Jean feels socially isolated and as if she is “just waiting for death.” She had an accident and cut her leg open the day before this interview. 

Jean thinks her GP is “brilliant”; he comes whenever she wants and she communicates with him by email. She is no longer able to attend the surgery herself since carer support was cut due to government austerity policies. She self-treats with homeopathic remedies as a trained practitioner, but no longer treats other people. She pays for physiotherapy.

Jean’s heart condition appears to be prioritised over her other conditions. Jean wears an alarm button around her neck. A large cyst in her liver presses on one of her lungs, which affects her breathing and makes her susceptible to pneumonia. She nursed her husband for the last ten years of his life, “when he died, I had another stroke.” She has to sleep sitting up. Of her situation, she says:
“I live on the edge all the time. You just don’t make plans for the future that’s all [laughs].”

Jean describes a range of health problems. The risk of brain bleeds means that she cannot take the anticoagulants which would help with her heart condition.

The heart muscle was damaged and so, subsequently, I’ve been suffering from angina and heart failure, which went into atrial fibrillation, which I’m in constantly.

Can’t get out of, and this has affected other parts in that I developed diabetes. One of my kidneys doesn’t work very well and periodically I have I have periods of where I bleed in my brain. I have to be very, very careful on anticoagulants because that causes me to bleed in my brain and I lose my balance and I’m off my feet for several days. So it’s like the true devil and deep blue sea really. They can’t give me anticoagulants because it makes me bleed and yet that’s the one thing that would stop the heart, the blood from coagulating and giving me more thrombosis. So we stagger on from day to day. So, basically, that that’s what’s wrong with me is heart failure and also this problem with the brain tissue being damaged right, I go between the two and with the diabetes as well doesn’t help, and recently I’ve started to have problems with my breathing. 

I’ve been on oxygen now for about two years, off and on, but my use of oxygen has become more and more constant. In fact, I can’t get through the night without oxygen now. 

Jean has to sleep sitting up whilst breathing oxygen. She could not have heart surgery for her heart problems as it would be too risky for her to have a general anaesthetic.

I have to sleep sitting up. I can’t lie down. And I have oxygen on all night. I can’t, I can’t get through the night without oxygen.

And then in, so now I’m taking half of this bisoprolol fumarate, which is a beta-blocker in the morning as well now.

And he said, we’ve got to try and keep my diastolic down and the pulse down and, hopefully, give the heart some opportunity to heal. It’s pumping too hard. It’s pumping too hard and too erratically.

They can’t they can’t give me a bypass or a pacemaker. I couldn’t take the anaesthetic.

Jean doesn’t get the level of help she would like with everyday activities. She feels socially isolated and bemoans the loss of family networks close by.

My son is disabled. He can’t get here. My step-daughter has a business and she can’t get away and it could be weeks before you have a visitor. And I think that’s half the half the problem. No joy in getting old at all. I can’t get out to anything because if I go out anywhere, I’ve got to have support. I’ve got to have somebody with me. I’m so doddery on my feet that if I walk with sticks, I am a bit unbalanced on my feet or if I have a wheelchair. But if I have a wheelchair, I’ve got to have somebody push me and somebody to help me and there isn’t anyone. So the things I might get to, social things I might get to, I can’t get to. I can’t get to a local concert or something the children are doing at the school or something like that. I did try joining the History Society and there was seventy-two people. I counted them. There was seventy-two people at the meeting and I said to the chairman, “Would anyone be willing to bring me the half a mile down the road from my house down the hill to the next meeting?” And not one single person offered. So this big society where everybody is supposed to be helping everybody else, it does not exist. I live in a I live in a street here, neither neighbour talks to anybody else. Right from the beginning I said ‘hello’ when they moved in, didn’t want to know. You know, and I’m quite a friendly person and I’ve always lived quite happily with my neighbours before, couldn’t understand it, but people just don’t want to know there. There isn’t the community. There isn’t the help. I’ve got one neighbour, who lives about ten, fifteen doors down and she’s in her late seventies, she she’ll come in to massage my feet for me because I can’t reach them and that’s it. And I’ve got my carers, who just come in to do my basic care, and that’s all they’re allowed to do is my basic care.

They’re not supposed to do housework. They do. They put the vacuum round but I mean the house needs a good clean and I, my income is such that I’m not in a position to afford to pay people to come and do it. And I would like, my garden is the same. I used to love my garden, used to love pottering around but again, I need somebody with me just in case I fall or, you know, just to be there and that’s not necessary. That’s not counted as essential. The only essential things are my personal care and that’s it. Get my bed changed once a week, get the toilet cleaned once a week, get the bathroom cleaned once a week and the kitchen, and that’s all you’re allowed. And this is supposed to be living. This is what they call living.

No, I find it extraordinary. I’ve worked in preventative medicine all my life and to me, helping somebody stay well and healthy and fit and socially active, is essential. It isn’t it isn’t a gift, an extra, it is part of life and, when we had kinship families, we had families, we had people, we had cousins and aunts and uncles and grandparents and people that we could go to or could come to us. But that doesn’t happen anymore. There’s lots and lots of people just like me, who live totally isolated lives, you know, and it it’s enough to crack you up if you were of less stronger fibre, and I think it does. I was in hospital in in the [name] Hospital with women who’ve had strokes and they just turn their faces to the wall. When they’re told they were hemiplegic or they’re never going to live a full life again, and they just turned their faces to the wall and died, just gave up. And these people who had years of life left in them if they were given the help and the support that they needed.

I mean I’ve had battles royal with the social services but it doesn’t get anywhere.

Jean’s doctor prioritises her heart because it’s “packing up.” This fits her priorities because her heart condition means she can’t go out for walks, which makes her depressed.

And do you find that your, does your GP concentrate on one of your conditions more than the others or?

No, he treats me, well, well, he treats me for the heart basically because it’s the heart that’s packing up, that’s causing the problem.

And of the conditions that you have, do you find that one perhaps dominates more or impacts more?

Well, the heart dominates more, the heart dominates more. I mean the ankylosing spondylitis I have what fifty, sixty years and it’s always painful and it restricts some of my mobility, but without my heart working properly, you know, I’m sitting in a chair day after day after day, and that and that’s depressing. It’s totally depressing, believe me. Sometimes you think, “Well, why am I bothering to go on? Why don’t why don’t I just sort of take a dose of sleeping pills or something?” You can get that depressed.

And is that something you’ve shared with your GP or?

Sorry?

Is that something.

Yes, he knows.

He knows I get, I’ve got depression but he knows I’m not a depressive, if you know what I mean. He knows it’s just the circumstances, you know. I’m not I’m not normally given to depression. I’m pretty, I’ve always, they used they used to call me happy because I was always laughing and joking and because I was full of fun. So it’s not it’s not my nature to be depressive, but it gets depressing. Sometimes you feel like a caged tiger.

And there’s nowhere to go. I can’t get out. I can’t get out and walk anywhere. I can’t get down the road. I can’t even, I live in the most beautiful forest. I live in the [area 2]. It it’s glorious and when I had my German Shepherd, when she was alive and I was able to walk, I’d walk up to two miles a day with her and it was lovely. I haven’t been in the forest now for what three, four years.

Jean was critical of nursing care she saw in hospital. She reported an incident to a patient’s relative who then made a complaint. When the nurses turned Jean’s oxygen off, she got out of bed and turned it on again.

And it’s the attitude, the I mean, at one time, you know, nursing was a proud profession but yesterday watching those four nurses lounging around in the in the cubby-hole behind the desk, chatting away and there were people queuing up, desperate, coming into casualty, wanting to see somebody, anybody, and just being ignored as if, “Oh well, we’ll deal with them in a minute.” You know. It’s all wrong. My friend, who was with me, said, “I’ve seen better in East Africa.” He said, “When I was based in Africa, I’ve seen better care.” I said, “Well, better not say anything. It’ll put their backs up.”

And you have to say, “Yes, sir, no, sir, three bags full, sir.” And bite your tongue and not say anything because if you say anything, you’re difficult. I was I was in hospital and the old lady next to me was ninety and deaf and blind and lying on a water bed, and she was calling for a commode in the night, calling for the toilet in the night and they ignored her for three quarters of an hour. In the end, I rang the bell, kept ringing the bell, two young nurses came and they said, “Oh, we’ll put her on a commode, I’ll put her on a bed pan.” I said, “No, she needs a commode. She can’t sit on a bed pan. She’s on a water bed.” “Don’t you tell us our job,” they said. I said, “I’m just saying, she always has a commode.” Anyway, they put her on a bed pan and she soiled herself quite badly and they left her there and in the morning, wrote in the book, “She soiled herself in her sleep.” And when her daughter, I told her daughter what had happened and she complained. When those two nurses came on duty that night, they switched off my oxygen. They came to my bed, said, “Oh you don’t need that.” Switched it off and walked away, you know.

So I just waited until they were out of the ward, got myself out of the bed and switched it on again, but if I hadn’t been knowledgeable, I mean, you know, I would have been without oxygen.

Jean has been told that there’s nothing more that can be done for her health conditions. Without social support, she wonders whether life is still worth living.

So is it more your GP that you deal with now relating to your conditions, or do you still have specialists that you see or?

I don’t see any specialists now. Only my GP. There’s nothing they, there’s nothing they can do.

I mean I’ve been told categorically, “There’s nothing we can do.” They can’t operate on my brain to repair the damaged tissue. They can’t operate on my heart because the heart muscle has packed up and the diabetes is incidental to the heart condition and the kidneys. I mean they all start packing up together. My lungs are packing up and not being able to breathe properly. That’s just getting, because the heart doesn’t pump so I get fluid in my lungs.

I hate taking diuretics but I know I know I have to take them. It’s according to how much longer I want to go on living I think, and on a day like today you want to go on living, when the sun is shining [laughs].

You know. And my cat, what would she do without me I say, yeah. Oh I don’t know. I just, I’m sorry to be moaning about it.

It’s really important for us to hear the wider impact that your conditions have on you as well.

No, I think it’s the isolation. It’s the isolation, lack of support. I think if people with my conditions had more support just to make life a little bit more bearable for them, you know, people would live healthy and happier lives and they would stay healthier. I’m quite certain of it. You can get some exercise, if you can enjoy some of the pleasures in life, just even getting out in the fresh air, like this morning, going round the shops, it was great and that’s the first time since before Christmas that I’ve actually gone and looked in a shop window, not just dashed in, grabbed what food I need and come out again.

You know, I don’t think people realise. It wasn’t wanting to spend money. It was just to see something different, do something a little bit different, pass the time of day with somebody different, you know. 

Yes, just that change of scene. Just a change of scene.

Change of scenery and feeling that you’re alive and you’re not just existing, you know. People are not just waiting for you to pop off, you know.