Joan's story

Joan, 75, cares for her daughter Joanne who is 41. Joanne was born with physical and learning disabilities as a result of German measles during pregnancy. Joan’s husband is 82 and has had a stroke.

Joanne has been deaf, dumb and partially blind since birth, as she was a rubella baby. In the mornings she rattles the bed to let me know she’s awake and in the evenings she makes a sign to go to bed by putting two hands on her ear.

For the last five years she has been in a wheelchair and everything has to be done for her. She used to walk and play football with her dad, but then she had to have her teeth out and everything seemed to go downhill from then. She was in a wheelchair before we knew it.

Joanne is a happy, chirpy girl. We love her to bits and we wouldn’t be without her, it's as simple as that. I just thank God that she’s got through these things; we nearly lost her once when she went into hospital for pneumonia. They brought her round and said if she goes again we’re not going to revive her.

However it's true that we miss out on a lot because of the caring responsibilities; we can’t leave her.

Our local Carers' Centre has been wonderful support and I can’t praise them enough. They have given both emotional and practical help; the coffee mornings are so good and when you come to these places you find other parents in the same situation.

You talk to one another and realise that they're in the same boat and it makes you feel better – that you’re not on your own. Peter Pan is another organisation that has helped. We would not get anywhere without these places.

We have only had two holidays in the last eight years, both from the 'Time for Me' project at the Manchester Carers Centre. We need specially adapted accommodation for Joanne, as she always comes with us.

Of course there has also been an effect on family relationships, because we have had to give Joanne more of our attention. I think our other children realised that my job was with Joanne.

Since my husband has had a stroke, I’m more or less looking after him too. He’s like a Jekyll and Hyde and wants to go out every day in the car, so I have to go with him. He can’t get his words out anymore and it sounds awful, but I am frightened of anything happening and my not being there.

Looking after a disabled person has its ups and downs. It gets harder as you get older because you don’t have the strength for lifting them. We do have support from care workers, which is an enormous help; they take Joanne out all over the place. I try to look after Joanne at night though, because my husband does not like them coming. Just lately I’ve not been so good in myself and I have to go for an angiogram, so need to try to take things easy. But I’ve got to look after them – they’re my priority.

Our biggest worry now is who will take care of Joanne if we can’t. We’re in a bungalow at the moment, so I am hoping it goes in Joanne’s name and the care workers can go in to her. I would not like her to go in one of these homes – that is the biggest fear. I keep saying please God leave me a few more years.