Ken - Interview 34  

Ken - Interview 34

Age at Interview: 59
Sex: Male
Age at Diagnosis: 58
Background: Ken (aged 59) and Chris (aged 60) are a married couple with 3 adult children. Ken retired as a soft furnishing workroom manager. Ethnic background/nationality: White British.

Brief outline:Ken was diagnosed with rare inherited (familial) form of MND less than a year ago (2006). He has limited arm and leg movement, has a PEG and uses a Lightwriter to speak, but carried on working until a month ago. Interviewed through his wife Chris.

More about me...

To watch or read an interview clip, click on the heading that interests you. Either a video,audio recording or text will open, depending on the clip
To close transcript boxes, click here
To print the interview’s text, click here
Male
Ken is happy to have day care at the hospice, but she finds it hard to see him there and thinks the volunteers are sometimes a bit over-enthusiastic. [Ken is unable to speak].

 



Chris: Well, the Macmillan nurse, she just came to introduce herself. And she's there if we need her. She doesn't come on a, you know, because Ken doesn't need nursing as such, do you? But I think she just came to get to know us, because obviously further down the line we may need her a bit more. She arranged, asked Ken if he wanted to go to the day centre, which you agreed to, didn't you? So she set all that up for us. You've only been twice, because then you was ill last week, wasn't you? So you didn't go. So she set that up. And again she's a very nice lady. Ken emails her sometimes, or she's on the end of the phone if I need her.

And will the hospice step in if necessary for overnight stays?

Chris: No, it's only a day centre. Nobody stays at this particular one. It's really to give us a break from one another, to give me a bit of a break, a change of scenery for Ken. [pause for Ken typing].

Ken: You didn't like the hospice.

Chris: I didn't, no, I agree. It's the same one that Ken's brother went to. He enjoyed going, didn't he? He took up painting when he was there. And I think - did he just go once a week? I think he did, and they used to pick him up. And because our son was on holiday, we decided that he would take Ken, which he done, didn't he, the first day. And then he picked me up from work. And he said, “Oh, I didn't like leaving Dad there. All these old people just sitting around in chairs.” So then I went with Ken, [son's name], our son to pick Ken up. I must admit we got there a little bit late because we got behind a tractor [laughs]. And so you know what it's like when you want to get somewhere. And so when I arrived people were being picked up. And all I could see was Ken in a chair and lots of old ladies with perms, like the blue-rinse brigade. And I thought, “That's it. He's not coming here any more.” And I got all upset. But Ken wanted to go again, because they were going to massage his legs the next week. So I let him go again. Again our son took him and I went to pick him up with [son's name], our son. And we got there a little bit earlier, and Ken was playing bowls. A lady had picked, playing bowls with you, and he'd won twice. And he was playing with his left hand. So I said, “The others couldn't have been very good.” But they'd given him a massage. And the nurses there are very nice. And I don't mean to be unkind, and it sounds really horrible, but I feel, they're all volunteer workers, but sometimes I feel they're a bit overenthusiastic, you know. I just feel - like they were playing bowls and the lady that was doing it, obviously she must go about every day, every week, I don't know, but Ken rolled his bowl and it was all this, “Oh, well done, Ken!” and all this. And I just feel like, you know, you're being, not, I don't know what I mean really, but…

A bit patronising?

Chris: Yeah. And obviously they don't, you know - and they come round with tea and cake. And I had a cup of tea and a bit of cake. And it is a nice place, isn't it?

Jonathan Miller - Motor Neurone
How Healthtalkonline works, Alan and Elizabeth's story
   Support our work

Mail to a friend

Send