Ann & Barry - Interview 48  

Ann & Barry - Interview 48

Age at Interview: 54
Sex: Female
Background: Ann is a retired hospital administration clerk, married with 2 adult sons. Ethnic background/nationality: White British.

Brief outline:Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).

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Female
It helps her to have hospice respite care for her husband. The care is excellent but he'd probably prefer to stay at home. She still visits him every day.

 



And also our GP has put us in contact with our local hospice, who, and I now get respite. I've been getting it for the last two years. Which has been very good. I get three separate weeks during the year, and then Barry goes in there for a week. And she got that set up for us. And they've been very, very good, very helpful. And again it's, it's so good being able to rely on somebody outside because we don't have any family round here. And sometimes you need to lean. Very difficult. And when the professionals actually let you do that, it's excellent. So build up a relationship. It's important. You're going to need people.

The respite care, what's been your husband's experiences of that?

Wonderful. He doesn't like it, and he doesn't like going there. But when he's there, he gets the best of care possible. He actually enjoys the interaction with other people because his normal interaction is totally just with me. And I keep saying to him, “Are you not bored with me?” And, and he says, “No.” But he must be. So he goes in there. And he's a charming man and everybody comes in and talks to him. And it's great for him. He's very happy to come home, but he can't fault it in any single way. The girls are great with him. All the nurses, the doctors there are super. And they'll spend maybe only five minutes a day with him or maybe half an hour, whatever. But he gets not a kick out of it. He, he, he'll never say he enjoys it, but he doesn't hate it. Let's put it that way [laugh]. And he doesn't ever say, “I won't go in. I don't want to go.” He, he manages. And they think he's great, because he doesn't complain. And he's very good that way. He'll eat anything that's put in front of him. And if the buzzer goes, there's somebody else needs the girls, he sends them on their way. And he always, says, you know, “I won't come in if somebody else needs the bed.” But he also knows I need a rest.

And how, is it far? How far do you have to go?

It's only two or three miles away which is a good job really, because even though I do get the rest, I still go in every day. 

Do you?

Yes, I can't help it. I'll maybe not go in one day, where I might go and visit my brother in the north of England or I might go and visit one of our sons. But I'm back the next day [laugh]. But I don't have to think about the cooking and I don't have to spend all day with one ear listening to what might be needed. And that's, that means I get some sleep. I mean don't get me wrong, I do sleep. But it's like having a new baby in the house. You are tuned in. And if anything, a cough, a touch, no sound at all, which is even worse, you wake up, you, or you go into the other room, whatever. You're just focusing on it. So it's, and that's 24 hours a day. So when he's in the hospice I know the girls are looking after him. Because they will phone me if they need anything or they think I ought to know anything that's going on. And I can relax a little bit and, and recharge the batteries. And get the kitchen done and do the garden and this kind of thing.

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