- People's stories Interviews with people getting attendant care, family members, workers . . .
- Alana Alana had a serious car accident aged 14. She has a brain injury.
- Rob Rob had a stroke. He was in a nursing home and now lives at home.
- David David had a car accident when 20. He has a brain injury. He has returned to work and to driving.
- Karel Karel had a bicycle accident. He has a fractured spine. He lives with his wife. They are in their 80s.
- Emma Emma was hit by a car. She has a brain injury and needs 24 hour care.
- Christakis Christakis' head went back in a car accident and he broke his neck. He lives with his wife.
- Attendant Care Provider Brain Injury Service Coordination Managers and Community Support Workers.
- Attendant Care Provider Spinal Injury Service Supervisors and Attendant Care Workers.
- Case Managers Case managers.
- Life Time Care Coordinators Lifetime Care and Support Coordinators speak.
Karel, his wife and worker
A number of years ago while out cycling Karel had a serious accident. It left him with a fractured spine and he was no longer able to walk. He was cycling and crossing the highway coming home. Something he’d been doing for 16 years every day. The next thing he remembered he was in hospital. He lives with his wife. They are in their 80s.
He spent almost 12 months at North Shore hospital and Ryde Rehabilitation Centre. Then his house was modified and he came back home.
- Norma, Karel’s wife
- Lyn, Karel’s personal care worker
How did you find having carers?
Much less traumatic than I thought it would be. I didn’t like the idea of people coming into the house and sort of sharing our lives. I didn’t like the idea that there should be so many of them. But then that worked out very well. I’m happy with the result.
From my point of view I was happy to have them because I couldn’t do everything for Karel. Had I been younger it would have been it would have been a lot easier but I was 80 then and I just appreciated the help.
Norma, Karel’s wife
Norma is a lot more confident in herself. She’s not depressed like she was before. She sees people whereas before she wasn’t seeing people as often. She’s been able to go away to visit her sons and we’ve been able to look after Karel while she’s away so she knows that we take care for him. Karel has become… I don’t know, you’ve just gotten better, haven’t you?
Lyn, Karel’s personal care worker
Norma and Lyn
Karel's Story (10 mins)
Full text of the video Karel's Story
ON SCREEN: Karel’s Story. A number of years ago while out cycling Karel had a serious accident. It left him with a fractured spine and he was no longer able to walk.
ON SCREEN: NORMA Karel’s wife
NORMA: And then one morning Karel had this accident at 6 o’clock and it changed our lives completely.
KAREL: All I can remember is that I was coming home after the cycling trip. And I looked behind me, I couldn’t see any cars. So, I though it was safe to turn, to cross the lanes.
NORMA: He was cycling and crossing the highway coming home. Something he’d been doing for 16 years every day.
KAREL: And the next thing I remember I was in hospital.
NORMA: And this one day a “P” plate driver hit him. He doesn’t remember and we are not sure who was at fault.
KAREL: The injury was I had a broken spine, I had some broken vertebrae in the neck, I had a cracked skull and I had a broken right leg.
NORMA: From then on almost the next 12 months we spent at North Shore hospital and Ryde Rehabilitation Centre. And then our house was modified and we came back here.
ON SCREEN: Their house needed alterations in Karel’s bedroom & bathroom.
NORMA: In the bathroom we had a wall knocked down because the toilet was separate. We then had the bath tub taken out. We had bigger and sliding doors so that the wheelchair could come in and out. Also the shower recess had to be suitable for somebody who hasn’t got… who’s only got the use of his hands.
In the bedroom we had 2 small bedrooms here so they knocked out a wall. They put a big sliding door so that he could get his chair in and out. We needed extra room for his hospital type bed.
We had to have a wooden floor in case of any spillages and that’s cleaned every day. We set up his computer there so he could use it with his desk here. And we needed room for the hoist.
ON SCREEN: Having attendant carers also enabled Karel’s return home. Lyn is one of Karel’s care workers. After 3 years she has a set routine….
LYN: First of all, when you come through that door Norma is usually there in the kitchen.
ON SCREEN: LYN Attendant Care Worker
LYN: You say Hello to Norma and then you go into Karel and you prepare him with the sling to get him out of the bed and hoist him into the commode. Then the commode goes into the bathroom where the toilet is. And it’s over the toilet. And I help by massaging his stomach and doing various exercises with him we help him to discharge his bowels.
NORMA: They come at 7.30 in the morning. They go to see Karel, put him in his commode… Lift him out of the bed into the commode chair, take him to the toilet and then he has a shower. This takes quite some time. Then they wheel him back into the bedroom and lift him again into the bed and dress him. Now, that takes till about just after 9 am. And then after that they are able to do sorts of jobs, jobs for me that Karel used to do for me. I’ve got two damaged shoulders so there is a lot I can’t do. And they even wash up, they do the vacuum cleaning because Karel used to do that before the accident.
LYN: Ok, come over.
KAREL: See its critical where that board goes because if it’s in the wrong place it won’t work properly.
KAREL: They help me to get into this chair and they would do it with a slide board so I don’t have to be lifted again. And I sit in the chair and I can do various things. I have a computer. I can spend some time on a computer to fill in time. I can do things with my hands.
LYN: Ok, here we go.
KAREL: I’m never bored. I have not been bored since I had the accident. I always have something to do, so that part is not a problem. I haven’t lost desire to go anywhere. Because I can go to places I’ve never really wanted to go like shopping centres and I can’t go to places where I want, where I would like to go which is to climb mountains.
ON SCREEN: At the start the care workers were more a challenge for Karel than Norma
LYN: Would you like a cup of tea or coffee?
NORMA: Not really.
How did you find having carers?
NORMA: Well, there were not problems, were there?
KAREL: Much less traumatic than I thought it would be. I didn’t like the idea of people coming into the house and sort of sharing our lives and unpredictability. I didn’t like the idea that there should be so many of them. But then that worked out very well. I’m happy with the result.
NORMA: From my point of view I was happy to have them because I couldn’t do everything for Karel. Had I been younger it would have been it would have been a lot easier but I was 80 then and I just appreciated the help.
Did you feel the invasion of your privacy?
KAREL: No, not really.
NORMA: Not as much as I thought I would. And it’s become less as time has gone by because we tend to treat the carers as family and they respond accordingly.
LYN: Ok. It’s hot, be careful.
KAREL: I’ll be careful.
NORMA: There, you sit there.
ON SCREEN: In this work Lyn finds it a challenge maintaining professional boundaries.
NORMA: So, Lyn can actually eat her sandwich.
LYN: Yeah, I’m starving!
LYN: There you have to always keep in mind that you are a professional. But in saying that you can still show love and attention to people. You try not to cross boundaries but you have to. You are not supposed to talk about your life but then again how do the people you are looking after get to know you if you can’t talk about your life? You are not supposed to talk about their life but how can you not help them or how can you help them if you don’t know anything about their background?
LYN: Have you heard from Michael and Peter?
NORMA: Yes, I had a text from Peter from Gili Island, that’s off Bali.
Does that create a tension that on one hand they are professional carers and on the other hand they are kind of friends, family members? How do you balance that?
NORMA: Well, it’s almost impossible not to get friendly with people that come doing such intimate things for you. So, I know you are not supposed to get too friendly with them but how can you do it? I don’t know. And you know, if it works there is still a certain amount of respect and duty.
Karel, how do you see that tension?
KAREL: I don’t see, I don’t have any tension. I really don’t have any. I was apprehensive to start with but once it’s started going I found that there is no problem.
NORMA: You’ve got the doors didn’t you?
ON SCREEN: During her 3 years with them, Lyn has noticed changes in Karel & Norma
LYN: Norma is a lot more confident in herself. She’s not depressed like she was before. She sees people whereas before she wasn’t seeing people as often. She’s been able to go away to visit her sons and we’ve been able to look after Karel while she’s away so she knows that we take care for him. Karel has become… I don’t know, you’ve just gotten better, haven’t you?
KAREL: Really? I suppose. Well, when you meet somebody for the first time like this who is going to spend so much time with you, you can’t help feeling apprehensive. But I fortunately lost the apprehension fairly quickly with all the carers.
ON SCREEN: Thanks to Karel, Norma & Lyn for taking part in this video. Interviewer Paul Bullen. Camera & Editing Peter Kirkwood. Produced by Paul Bullen & Peter Kirkwood. www.living-with-attendant-care.info.