Rachel

Age at interview: 43

Brief Outline: Rachel looks after Roger, who broke his neck in an accident. Although he is in a nursing home she feels that she need to be with him most of the time to make sure his needs are met. In particular she wants to keep an eye on his suprapubic catheter.

Background: Rachel is an informal carer. She is married. Ethnic background/nationality: White British.

More about me...

Rachel works hard as an unpaid carer. She looks after her husband, Roger, who broke his neck in an accident in India (see Roger's Interview). Although Roger is in a nursing home Rachel feels that she must monitor how the official paid carers look after him. In particular she thinks that she should keep an eye on his suprapubic catheter to make sure it is draining correctly. Rachel feels responsible for Roger, but she is not recognised as her husband’s carer. One doctor told her that she had ‘over-involved relative’s syndrome’. 

 

Looking after Roger has not been easy. They both had to get a lawyer to fight the system to get “continuing care”. This means that Roger’s fees in the nursing home or elsewhere are all paid for by the government. Even so Rachel has financial problems, partly because she is not well enough to have a job, and partly because she wants to look after Roger. Rachel has been looking after Roger for the past five years, and she has not had a holiday. At times her health has suffered and she has become quite depressed. Taking Roger out is a major exercise. She says that she has to plan a trip out like a “war campaign”. Rachel thinks that Roger’s suprapubic catheter is better than a urethral catheter, but any sort of catheter has a negative effect on the intimate side of their lives.

 

As a carer Rachel says that she has become extremely cynical and that she doesn’t trust anyone, least of all the government.   

Rachel didn't trust the professional carers. She didn't resent her caring role but she found it...

My role as a carer is looking after my husband and monitoring how the official paid carers look after him.I can’t trust anybody with his care unless I’m supervising it. And they have a special name for that which is very convenient, which is ‘over-involved relative syndrome’.

 

Really?

 

Oh yes.

 

Who gave you that term?

 

It was a doctor at the hospital that I went to. We [my husband and I] want a life. But with a catheter it is extremely difficult. You’re always thinking, you always have to take a pot, gloves, medical things, the whole lot. And you’ve got hampers [of food] and stuff. You know you just want to have a life.

 

What about the effect of all this on the wider family relationships? Has all that had a huge impact on wider family relationships too?

 

Well we don’t really have any, it’s just us, and we’re hugely co-dependant. It [the catheter] has made a huge difference to our relationship.

 

So the catheter’s been a key problem

 

Yeah

 

That’s affected the relationship?

 

Mm. But you see I don’t mind much, I just get along with it. If you really love someone that’s what you do, you don’t mind. But it is physically very wearing. Every time or any single time you go out to a social event, twice a year probably, except to hospitals to get your catheter changed, is, you’re always worrying. Worry, worry, worry all the time. And I’m not a worrier, I’m really easy going. I don’t mind flipping a flop and putting them, getting the urine out and everything because it’s important and many people do not realise how important it is.

 

Has your role as a carer changed a lot over time or has it been much the same over the years?

 

I would say that it’s worn me down and I’ve become more stressed.

 

Is there anything else you want to say as your role as a carer?

 

My house is falling down. I can’t pay any of my bills. My phone's been cut off. They’ve taken away my travel pass so I can’t visit my husband; you know I don’t have that sort of money anymore.

Rachel and her husband talk about the Continuing Healthcare that he receives. At first they found...

So does the government pay continuing care?

 

Rachel' They do now. They wouldn’t have.

 

It was difficult was it?

 

Rachel' Oh yes, very difficult and it cost an awful lot of money, thousands of pounds in legal fees. But what can you do?

 

Does that mean that the government pays the entire cost of a nursing home?

 

Rachel' Yes, it does, yes. And the other thing is a Continuing Care package follows you wherever you want to go.

 

Oh that’s good. So you could go home and then that would pay for carers to come in?

 

Rachel' Oh yes, everything.

 

Husband' But you have to have a special home, with special wet space, special extra space.

 

Yes, of course.

 

Husband' And at least one nurse and one full time carer.

 

For them to pay continuing care?

 

Husband' Which they say they would do.

 

Rachel' Two

 

Husband' They have to legally anyway.

 

Rachel' Two nurses in the day, in each day, one nurse and one carer and then at night one nurse and one carer.

 

So if you need one nurse and one carer both day and night, then they’ll pay continuing care?

 

Rachel' They will.

Even though Rachel's husband was in a nursing home, she felt that she had to keep an eye on his...

 Are there organisations specifically to help you as a carer that you could get in touch with?

 

There are but they’re hopeless. I mean really truly hopeless. It’s just a front. I said, “Okay if you really want to help me,” it’s what I feel like saying. Because of course I can’t because it would be impolite, but have they ever slept at the foot of their husband’s bed? Sorted out the catheter? Do they know about SPC’s [suprapubic catheters]? No they don’t. Do they know about what caring really is? It’s about being with your husband or partner as it is now.

 

I try not to be angry but it’s very difficult not to be. I’ve lost everything I’ve got, you know. I’m too ill to go back to work. My husband can’t work. They’ve taken away everything I’ve got, these government people. Do you know I really don’t mind as long as my husband’s SPC is okay because that is vital for his survival, I really don’t mind.

 

Have you ever been in touch with the Bladder and Bowel Foundation?

 

No.

 

Or heard of any other online support groups?

 

I don’t really do computers.

 

No.

 

I have one which my husband kindly gave me but I don’t have the time.

 

Do you have friends to support you?

 

No.

 

I can see you need support yourself.