Barry

Age at interview: 67

Brief Outline:

At age 51 Barry had a stroke that affected his speech, hearing, reading and writing but he remained mobile. Eight years later he was diagnosed with Chronic Obstructive Pulmonary Disease (COPD). He also has a condition of the adrenal glands.

Background:

Barry is married with one adult child. He is a retired bricklayer and education welfare officer. Ethnic Background: White English.

More about me...

Barry feels he would have been unable to deal with the aftermath of a stroke without his wife’s support. She came into hospital to provide personal care. He criticises hospital nursing and care staff who “lacked the basics” and “didn’t have any common sense.” Barry suffered from memory loss after the stroke. There followed a period of depression and excessive alcohol consumption. He gets angry and aggressive and feels he has undergone a “total personality change”; he thinks he’s now “very right wing” compared to before his stroke. Barry had smoked since childhood but gave up after the stroke.

Barry’s Chronic Obstructive Pulmonary Disease (COPD) is monitored by telehealth whereby his breathing is assessed over the telephone every morning. He uses a portable oxygen cylinder to help him breathe when away from home. He needs a knee operation, but surgeons won’t do it because of his medical history, as he would be “too much of a risk.” Barry thinks his GP is “good,” although he seems to have no understanding of what it’s like to have had a stroke. Barry’s medicines haven’t been reviewed in the last eight years: “I think they diagnose you and that’s the end of the story.” He wants to stop taking statins. His wife manages his medicines for him.

Barry attends a Breathe Easy group with his wife. He values the pamphlets and information provided. On dealing with daily life, he notes:

 “I want to do things all the time and suddenly I realise I can’t. The toilet bowl went wrong yesterday and I bent down, I knelt down to turn off the stop-cock before I phoned the plumber. I couldn’t get back up, you know. You think you’re alright, you do it and suddenly realise, ‘I shouldn’t have done that’.”

Barry used to work with asbestos and he wonders whether that caused his health problems. He also smoked for forty years.

And I know you mentioned earlier that you worked as a bricklayer and you were exposed to asbestos.

Yes.

And they don’t know if there’s any link.

No, I used to, when it was raining, today you get you get paid, but when it was raining, you never got paid if it, which means you work in all the elements. So we used to keep one house for dry weather, for wet weather and one, and we used to go and nail asbestos garage roofs on inside the garage. And if it was very cold, we’d shut the door and you’d be in the garage working, sawing asbestos and you might put a blanket across your nose, you might and I often look back at that stage and think, “I wonder if that’s what caused it?” Because it wasn’t until forty years later that this came on.

And I think before we started, your wife mentioned as well that you’d given up smoking by that point or?

Yeah, I used to smoke quite heavy until I had my stroke. I smoked I smoked from when I was about ten and I used to roll my own, and I smoked until ‘97 so it was about forty years I suppose of smoking.

Barry prefers to be told what to do by medical professionals rather than having input into decisions himself. He prefers not to know much about the details of his conditions.

In terms of the interactions that you have with medical professionals.

Yeah.

How do you find that? How do you find, do you feel you have input.

No.

Into discussions there? No?

No, not at all because I know. I don’t know. I was like you. I mean you’re an expert in your job and the doctors are the experts in their job. They know what they’re talking about and, as I say, about this doctor I went to see up with my eye, you know, a five minute job or you can go for a forty-five minute job, it’s up to you [laughs].

So do you feel that you’re ever asked what you would like or?

No, never.

Right. 

I’m never asked what I’d like at all and I I find that okay with me because I think if I was to tell somebody what I told the doctor about that and he just piffled it off. So what can you do?

Would you like more input into decisions.

Not really.

About your treatment?

Not really.

Right.

No, no. I don’t, I think that, because we used to have, keep a medical dictionary, when I was bad, and that’s the worst thing you can do.

Right.

[Laughs] chuck it out the door because you’ve bona fide got something wrong with you [laughs]. I don’t want to know too much. Do your job or a hobby, which but you don’t want to know too much about anything really. Because you get too involved then and, like I was with the medical dictionary, if you had a look through it, you’d find you’d got something.

Barry feels that his personality has undergone a total change since his stroke. He feels he has become angry and more “right wing”.

Barry: I told you about me all about me being aggressive, you know.

Margaret: You told her, okay [laughs].

[Laughs] so is that you find that sometimes you feel angry?

Barry: Yeah, very.

That type of thing?

Barry: Because, as I say, I’ve lost the finesse of my job what I used to do. Now I think I’m very right wing, you know.

Right.

Barry: Like let’s thump everybody but, you know, I hate to feel people have got away with it. When they appeal like I want to say to the people, give them some more.

Then they wouldn’t appeal so often then. I’m terribly right wing now, whereas I never used to go, I used to go over the centre of the road.

Okay and is that a personality change that you’ve noticed.

Barry: Yeah.

Since the stroke?

Barry: Personality, yeah. It is totally personality change.

Right. 

Barry: I just don’t, I just can’t stand people being left wing or middle of the road. I’m right wing and there is an answer, they go on about these people being on expenses but there’s, there’s a certain, there’s a limit you should pay out and I’m afraid I’m getting quite right wing.

It’s terrible really that you feel like that. I just get so angry at mainly what other people do.

Right.

Barry: And but I know I can’t do anything about it but I would like to change the world [laughs].

Barry went through a period of depression. His wife Margaret describes how he was put on strong tablets which have now been reduced. The tablets also prevent him from having a knee operation.

Margaret: We did have an episode about a couple of months ago, didn’t we, where you felt really depressed didn’t you.

Barry: Yeah.

Margaret: And wanted to sort of drink your life away, didn’t you.

Barry: Yeah.

Margaret: And you know, that was quite a bad time.

Yes.

Margaret: And you felt depressed and that. It’s was like during the winter months, you know.

Right.

Margaret: Because it was day after day like this really, you know.

Yes, yeah. 

Margaret: And you only thing you could do was like just go and have some lunch somewhere in the car and then come back home, you know.

And that, I mean that weren’t a very good time was it.

Barry: No.

Margaret: But he’s got over the he just wanted to go and be knocked out somewhere. That’s he felt, you know.

Right.

Margaret: Like a chemical cosh, you know, and that type of thing. The doctor put him on quite quite strong tablets.

Right.

Margaret: But we’ve managed to get off them all those haven’t we.

Barry: Yeah, yeah.

Margaret: And sleeping tablets, just down to a small dose now, you know.

Right.

Margaret: So gradually we’ve managed to do that because I don’t like him being on those tablets for very long and, you know, obviously, it is addictive. And another problem, and also this problem that he’s got, it’s stopped him from having a new knee.

Right. Right.

Margaret: So that’s, you know, it’s made his mobility.

Barry: Not good.

After he had a stroke, Barry was able to rely on his wife for reminders about things he had forgotten.

And that affected you in terms of your speech, and did it affect your mobility as well?

Yes, I had a stroke, as I said, in 1997 and, at the time, I couldn’t speak or I spoke double dutch, mobility was pretty poor down one side. Memory loss was complete. I was rendered deaf. And, luckily enough, I knew my wife for fifty years I think I’ve known her, well, she knows virtually everything I know so I could I could fall back on the information and then it would come flooding back. Because one lady I met in a local supermarket and she and she started talking to me and I said, “Excuse me, do you mind telling me who you are?” Shock, well, she said, “I’ve known you this last thirteen years.” 

Barry feels that doctors focus on diagnosis. He feels his GP should have reviewed his medicines in the last 8 years, but he does get hands-on advice from his local pharmacist.

And do you feel that, the medical professionals you deal with, do you feel that they view you and your conditions as a whole or do they tend to focus on individual things or how does that?

They, I think they diagnose you and that’s the end of the story. I’ve had my medication for the last eight years, never been reviewed at all. I’ve got five different types of inhalers. Medication, I take as well and I and I’m sure I’ve no need to take a lot but just allow it.

Is that something you’d ever ask your GP about or?

No, never, never. I you hear so much about they’re so busy but you know to ask them to review is, you’re not ill are you. And the chemist up there is very good. The chap is, he checks it all and he’ll say to me, he says something to me like, go to your doctor to see.

And I’ll say, “Why?” And he’ll tell me and I’ll go and sort it out. Now my grandson’s doctor gave him medication for a man and told [pharmacist name] about it, the pharmacist up there, and he says, “This is for a man, how old?” I says, “My grandson, he’s only nine.” “Well, he can’t have this,” he says. So when I go to the doctor, he realises that he’s made a mistake but not, you know, the pharmacist shouldn’t have to sort this out.

Barry would like a review of his COPD and his medicines. He is concerned about statins after reading a newspaper article on possible side effects. He doesn’t feel the doctor has sufficient time to address such issues.

If I could ask you now to tell me any messages or advice you might have for your, for healthcare professionals, in how they could help you better? What would you like that they might be able to do that could improve things for you?

I realise with my stroke, there’s nothing they can do. You’ve lost your brain cells and that’s the end of the story. They don’t regenerate but with the COPD, I would like a review on the point of view it doesn’t happen. I would like to see about my breathing initially, plus medication but you’ve got to and to stop I take statins and it said in the paper they give muscle fatigue. Well, I’ve got terrible muscle in my arm, just a just a sort of terrible but can’t say anything because I can’t stop statins [laughs]. I’d drop dead [laughs]. I can put up with it, you know. But I would like to be reviewed but I can’t see, it’s like you coming today, the doctor just hasn’t got that time.

Barry says that the only way forwards is to accept the reality brought by multiple conditions and “keep trying.” Never give up.

Could I ask you for any advice or messages you might have for other people who are living with more than one condition?

Just get on with it really because you get you get the medication from your doctors and I’ve often said, it depends on impression. If you’re a wimp, you’re always going to be a wimp. If you’re just going to accept it and get on then that’s the only way forward really is to keep on trying but also, on the other hand, know your limitations as well. But you you’ve got to try. You mustn’t give up.