Narelle

Age at interview: 69

Brief Outline: Narelle cared for her husband David at home until it became too difficult. He'd had a major stroke and, later, needed care from four carers. He now lives in a residential care home where Narelle visits him every day. He has a suprapubic catheter.

Background: Narelle is married and has 2 adult children. She is self-employed. Ethnic background / nationality: White British.

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Narelle cared for her husband David at home until it became too difficult. At this point, David had four carers coming in to help him every day. He was diagnosed with prostate cancer in 2003 and treated successfully with radiotherapy. A distended bladder was evident when David had a stroke in 2006, and so he was fitted with a urethral catheter. A few months later, the doctor wanted to see if David could live without the catheter but this was not possible as he had no bladder control. David had recurring urinary tract infections with a urethral catheter. The doctor then recommend David have a suprapubic catheter, which has worked successfully since then.

 

After David’s stroke, he could walk, feed himself and use his left hand. His cognitive skills, though, were badly affected and he was unable to write or use a touch screen computer. Up until then, he and Narelle had run their own business, supplying multi-lingual touch screen information systems to prisons. Narelle now works alone in the business, keeping David updated, and has some support on an ad-hoc basis. 

 

After his stroke, David needed 24-hour care at home, and Narelle said she managed to cope for a couple of years. She took David to the toilet every 2 hours and, at first, he had a flip flow valve. He later had a leg bag instead, which is what he continues to use. With more and higher doses of anti-convulsant medication, however, David became less and less able. He gradually found it difficult to walk and needed more help from professional carers. 

 

Narelle looked after David at home for 2 years but it became increasingly difficult. When a room became available in an excellent residential nursing home close to their own home, David moved there. He has been there for almost 4 years and Narelle visits him every day, and gives him his lunch. She said she is very happy with the care that David gets there and praised the staff. 

 

David and Narelle have also had a lot of support over the years from family and friends, many of whom now visit David at the nursing home.    

 

David could control his bowels but not his bladder. The doctor recommended a suprapubic catheter...

He’d [David] had prostate cancer treated by radiotherapy two years before, which is about 6, 7 years ago now. And obviously very successfully because his PSA is still 0.1, whatever the grade is, I can’t remember, but it’s very low. And so that was fine. 

 

But when he went into hospital with the stroke, he had a huge bladder capacity, which the bladder was very distended. And they put in a urethral catheter and drained off nearly 6 litres of urine. So that stayed. 

 

Three or four months later, they tried very hard to see if he could live without a catheter. But obviously the control wasn’t there. He had control over his bowels, but not control of that. So then eventually it was recommended by a doctor that David had a suprapubic catheter, which has been very, very successful. 

 

When Narelle’s husband, David, left hospital he went home. On the whole Narelle was pleased with...

Were you happy with the care from the district nurses or were there ever any issues or anything that you felt could have been improved?

 

Narelle' No. I think they were very good. They tended to send their more experienced people. At that time when David was at home, he only had one carer in the morning and one at night. And in fact he didn’t really need the one at night. We could cope with that. It was just, it gave me ten minutes break in the mornings. But if I thought there was something wrong, then I’d press the buttons and they’d come and sort him out.

Are you alright He probably hates me talking like this, but I mean we haven’t got any choice.

 

And was this care, was it through your private health scheme?

 

Narelle' No, no. It was local authority.

 

Yes. Was that quite easy to come by or difficult? If somebody is in a similar situation and they want to find out what kind of support can we get, were you told about all of this or did you have to find it all out for yourselves?

 

Narelle' No, on the whole, from day one, it was 24^th August 2006, we just went into the system and it was brilliant. Everybody did everything right. I think David was a huge fighter and determined he wasn’t going to be beaten by this, and he went along with everything. And was, oh, just a good person at knowing what to, what he should do and what he shouldn’t.

 

David' What is that?

 

Narelle' Didn’t you?

 

David' Fighter.

 

Narelle' There were some issues that were rather, I don’t know, bad, where carers didn’t bother doing things. So again I slightly hit the roof and demanded that they come and sort it out. And it was sorted out. 

David might have used ISC if its benefits had been properly explained to him. Narelle doesn’t...

About 11 years ago, David went to see an urologist, recommended because he had to do intermittent catheterisation and to follow up on this. But he didn’t. 

 

I suppose he was scared. He needed to be educated on the reasons why. David read engineering at Cambridge and he said, as an engineer, “I don’t understand why, if my bladder is emptying, there’s a problem.” And he didn’t have the explanations as to why a catheter intermittently would help. 

 

Meanwhile his PSA was rocketing and they discovered that he had prostate cancer. And he was treated, radiotherapy, I think I mentioned that before. And it overshadowed this gut that David had that was obviously holding 6 litres of urine. So, if he had been advised or had listened maybe, maybe a busy 50, 60 man who wasn’t going to listen. So I don’t blame the doctors but I do think stringent education would have been more helpful to him.

 

David went into hospital again. Then after a short period at home, he went into a residential...

Narelle' Quite often there was a weird sequence of events because I had David home for four months after six months in hospital. He then had one seizure, which I panicked, and he went into hospital where he was for two weeks. They couldn’t find anything untoward. He had some physio while he was there and then he came home. And we think it was all to do with UTIs [urinary tract infections.

 

So he then was at home again. We went down to Oxford for Christmas. We led a fairly normal life, didn’t we, David? And then the following February, this was about fifteen months, eighteen months after the stroke, he collapsed one morning. It wasn’t a stroke and I called the ambulance and they took him in. And he was in hospital for four months, which is where they started increasing the medication for the epilepsy. He was able to walk out, just, with a, and come home, walk up the stairs, but within two weeks he was in a hospital bed at home.

 

And that’s when we had two carers four times a day. And they basically knew how to handle the catheter, ‘cos it was suprapubic by then. And then the Continuing Care realised that we just couldn’t keep up this pressure and we were very, very fortunate that a room became available here.

 

Yes. Did they tell you about this nursing home themselves? Or,

 

Narelle' No, I actually knew about this one. I knew people who’d been in here. But the National Health Service was fantastic and if there was anything, they came and they talked to me and they explained to me. The Continuing Care people were brilliant. And so David was just one big package of problems, weren’t you David? Yes. No speech, incontinent by this stage so….but you’re happy now, aren’t you? Well as happy as you could ever be in this situation.

 

Do you like it here David?

 

David' Yes.

 

Are you happy here?

 

David' Yes.

 

That’s good. Do they look after you well here? Do they give you good food?

 

David' Food.

 

Food.

 

Narelle' That means yes.

 

Is it good food?

 

Narelle' Wholesome comfort food that most boys liked when they were at prep school. 

When David was in hospital, Narelle visited him every day and got useful tips from the therapists...

So while David was at home and you were caring for him, were there things that kept you going or were really helpful? Any routines to have or anything like that, for somebody who is going to be maybe new to that role? Anything that you would advise?

 

Narelle' Oh that really is difficult because I visited him every day for six months when he was in rehab. And I got to learn an awful lot of tips and tricks from the physios, the occupational therapists, the speech therapists. And we just tried to sort of get back to a normal living at home life. If I think of something I’ll say, but at the moment I can’t think of anything that wasn’t hard, lots and lots of tolerance and patience I think is the answer. And some sleep, if they’ll sleep at night.

 

Did you feel that you were always given all the information you needed?

 

Narelle' Yes.

 

In terms of the catheter, in terms of caring?

 

Narelle' Yes. Yes.

 

Any information you asked for you got the answers, did you?

 

Narelle' Yes, I mean it was just to try and keep it [the catheter] as hygienic and clean as possible, and empty it [the bladder] regularly. I don’t understand the logistics of how the bladder should or shouldn’t empty and how regularly, and whether having a bag would have been better than having just the tap. But I don’t think it created any more UTI’s than maybe he would have got anyhow.

 

And were you told in terms of drinking lots of fluid, that kind of thing?

 

Narelle' Oh yes. Yes, lots of fluids, the odd beer or Guinness I don’t think did any harm.