The meaning of home
The meaning of home

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The meaning of home

1.3.3 Change on a daily basis: shared care for the elderly

In the case of Mr Bright care is shared between his wife and formal carers and changes in the place of care are primarily to give Mrs Bright a break and Mr Bright a change of scene.

Click below to hear an audio clip describing a day in the life of Mr and Mrs Bright.

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Transcript: A day in the life of Mr and Mrs Bright

JUNE BLAKEWAY
We work very complicated shift patterns, so I would say I had individual care of four people at the minute. But then I work evenings and weekends, and then you can see fifteen or more people in an evening, or if you work in the days as well it could be well into the twenties if you work morning and the evening, which I very often do. Today I started work at eight o’clock, I went to my first client which was a gentleman. He’s, I had to shower and shave and that, that’s basically that there. And I go to my next client, which is two old ladies, one is ninety-two and her daughter is sixty-eight but is very very frail and ill, so I was there, gave some personal care, breakfast, helping to get dressed making beds and so forth, and then did some shopping. Then I went on to my next client and did an hour’s housework, that was, again was a married couple, the chap is a double amputee and his wife is very near blind, but they manage so much between them but you know it just a case of topping up what they do. So, then for an evening shift I would start, it’s flexible but at the moment as the pattern runs, five thirty I would see in the region of fourteen or fifteen people, some of them I would be going back to a second time. You start off in the early evening give them tea, that would be the first few. Then the next few are people who want to be undressed but don’t necessarily need to be taken to bed, and then at the end of the evening it’s the people who want to be put to bed, again the finishing time is very flexible because of clients’ requirements, but I would usually be finished by then, but not necessarily. It used to be almost all housework and shopping, now it’s much more hands on, encouraging people to go private for housework and shopping.
HELEN MADDEN
Giving home care obviously means working in someone else’s home.
JUNE BLAKEWAY
I don’t mind because I’m there for a purpose if you like, but I would be very inhibited about opening somebody else’s cupboard doors, for instance, you know if you have to be sort of, you don’t do that really, you know if’s not what you do it’s not what you’re there for, you’re not there to intrude you’re just there to do your bit as required and not intrude at all.
HELEN MADDEN
But there are other forms of intrusion given the intimate nature of personal care.
JUNE BLAKEWAY
It doesn’t affect me in the sense of embarrassment because for some reason I just don’t get embarrassed about it, but clients you have to be aware, they’re not used to being bathed by other people or washed by other people, so you have to be aware of their modesty and dignity. So you would never say leave somebody completely naked or if they were having a shower you would keep the nakedness for the minimum amount of time you would drape them with something as soon as possible, just to keep their dignity really, make them more comfortable.
HELEN MADDEN
One of June’s clients is Mr Alan Bright who has Alzheimer’s Disease. He lives at home with his wife, Pauline – both are in their 70s. Here they talk with block author, Sheila Peace.
SHEILA PEACE
Do you remember June who comes in in the morning?
MR BRIGHT
June, no. Do you? Do you remember anyone named June?
MRS BRIGHT
Yes I do know June very well.
MR BRIGHT
I don’t, do I? Why is that I don’t?
MRS BRIGHT
No I know you don’t, you never remember her.
MR BRIGHT
Have I missed something?
HELEN MADDEN
Home carers come in to assist Mr Bright twice a day and he also attends a day centre. For Mrs Bright this means an early start.
MRS BRIGHT
Any idea of going back to bed I wipe that right off the slate, because he’s up again and you’re you know dragging yourself out of a comfortable bed so what I do, it’s usually half past five something like that I, and he’s raring to toilet and we’re fighting about trying to keep him out of the bathroom and strip down and do the lot. So I put my dressing gown on and go to the toilet you’ve got to go in with him ‘cos he spreads it all over the place it’s a pretty disaster area if you don’t go in, and then I get him back put him gently, not so gently back into bed and what time my, “I’ve got to get ready for work”, he says. So I say “You’re not going to work now you’re retired”, we go over and over that hundreds of times. Gradually I calm him down, and I keep an eye on you know when you’re watching the baby, and you think it’s going to sleep and you’ll start to walk away and the eye opens, well this is exactly what happens. These blessed eyes, I keep telling him how lovely it is in bed, you know, no need to go to work now. Course it’s light you see so draw all the curtains hastily and keep it dark if I can. I edge towards the door to go and make myself a cup of tea and “Who’s that?” So I, he has eyedrops ‘cos he’s got glaucoma, so he likes them so I give him his eye drops then, and he’s that gets him lying down. And with a bit of luck I rush down and let erm Molly out and tea on the go, I lis you can hear the boards creak and he’s up again into the toilet, so I have to race upstairs, so the whole procedure is repeated. I’ve got my cup of tea now and I we’ve got a chair like this in the bedroom luckily, I take my pillow and I put his dressing gown round me as well and I sleep with my feet up on the bed, because it’s no good, I used to get up and do ironing but it’s no but you can’t leave him, and that is repeated again about an hour later. I’ll come down and get the revolting sugar puffs, and that’s all I have, and then as long as I’m working upstairs he’s alright, just. And it is time for me to get up so by eight o’clock I know June’s going to come.
JUNE BLAKEWAY
I simply got a ‘phone call asking me to go in, erm that was followed up by the form they they send us which would just have his name address and the details of the work you’re supposed to do there, and in in Mr Bright’s case it’s just wash and dress, you know that’s all that it’ll say just wash and dress. Don’t do anything for Mrs Bright at all, apart from leaving what I do tidy I’m I would leave the bathroom tidy when I come away. I usually make the bed, which isn’t sort of specified on the job but it’s a case of as I get Alan out of the bed I I make the bed it’s a habit I think ‘cos home carers make beds so you you just do it. I like making a difference really, I think it’s only a temporary difference usually, but you go in erm for a while they feel better more comfortable, or whatever, and then you leave you can’t make a permanent difference but you improve things for a while.
MRS BRIGHT
So the bathroom’s shut and I can hear them singing, and she laughs a lot you know and it’s I mean it’s lovely just to ha it’s such a relief, have er all this going on in the house. And the bus comes, so we’re all outside, waving to one and calming everybody down.
HELEN MADDEN
Care for Mr Bright takes over at the front door.
GEOFF WING
We are the first line of contact obviously with the client and the carer, cos we see them first so if there’s any illnesses to report or any troubles you just watch this or watch that you know, so we can report to the centre workers when we go in, that’s mainly our job.
BRENDA MASTERS
Alan’s been coming here since January, he started coming here three days a week, which very quickly went to five days, the need is very great there for Pauline his wife to have some time to herself really, she’s getting very tired, very stressed. We welcome Alan er as he arrives off the bus, he needs guiding into the unit, he’s quite disorientated and he may go off down the drive. We encourage him to sit down and have a cup of tea and calm him down because he’s quite anxious. We’ll sit with him and try to do something on a one to one basis, erm he does enjoy talking, but finds focusing on any sort of topic for a length of time quite trying, erm he gets lost and confused and his mind blocks. He will then like to get up he likes to get up and walk around, he’s quite an active person, he has a lot of energy. During the course of the day he requires a lot of reassurance and orientation as to where he is and why is he here.
HELEN MADDEN
Meanwhile Mrs Bright has other things to do.
MRS BRIGHT
And I come and clear the wreckage, and with a bit of luck grab what’s left of Alan’s toast and marmalade, and eat that and a cold cup of tea, just to get cleared up because I’m usually going out. This morning I was off to er the carers group, which is at the Campbell Centre, that’s the Alzheimer’s carers group, and a bus at the top of the road and I was there till twelve and then they give me a lift back and I came back, had my dinner because I find I cannot cook a dinner with Alan. It worries him he gets upstairs and starts taking all his trousers off and coming down and looking poor me I can’t do my trousers up while I’m trying to concentrate on the arts of cooking so I don’t attempt that. He just has beans on toast at night or something like that which works much better. So I have my dinner, and clear it up and I usually have an hour at my piano, I plan an hour, and I just lose my, but there’s plenty going on in the garden as the kitchen’s always in a mess you know I’m I’m always poking around the house really. That’s all, because er Dad comes at three and we’ll take Molly walking out then.
SHEILA PEACE
Is the dog going to need a walk do you think?
Is the dog going to need a walk do you think?
MR BRIGHT
She’s alright.
SHEILA PEACE
She’s very lively.
MR BRIGHT
Yeah. That’s why I don’t go after her you see, I don’t want her to get too highlively, over-lively.
MRS BRIGHT
…and Alan’ll come and that’s about all, he’s tired after then, cos he’s been indoors at Redwood so, he likes his walk but he does get tired, and then we come in and he starts, where’s his mother and I find this very tiring cos he asks me so often and when did she die and he didn’t know why wasn’t he told and all this, and to get away from this goes about my daughter dying and all this so, and everybody else, she’s he’s great for death is is, he loves it now I find it I don’t really want to talk about it, so I put the television on. He doesn’t like television but I’ll sit here with him hold his hand I usually go to sleep then. He’ll stop the questions that’s the thing, and we have a a light meal about six, and er half past eight usually the ladies come, and he’s glad, he’s had enough. Usually argues a bit with them and stands at the bottom of the stairs, I think he likes winding them up actually it’s it’s this you know I don’t want to go up and I know when he’s glad to go.
End transcript: A day in the life of Mr and Mrs Bright
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A day in the life of Mr and Mrs Bright
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Click to read the media notes [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)]   on the above audio.

Activity 5: Shared care

Central to this activity are Mr and Mrs Bright. You have just read some of Mrs Bright's feelings about coming to live in Bletchley 40 years ago and living in her community. Mr Bright, a former engineer, has Alzheimer's disease and lives at home with his wife. His illness has affected his short-term memory and as a result he repeats things. Whilst he is quite physically fit and active, he has also lost control over some of his former personal skills such as washing and going to the toilet. Further background details are given in the Media Notes and you might like to read these now (click on "view document" above).

Listen now to the audio clip. This has been arranged to give you a sense of how Mr Bright is cared for during the day. It begins and ends with Mrs Bright. You should listen to the whole sequence, then listen to it again and try to answer the following questions:

  1. How is Mr Bright's care shared and why?

  2. What does this mean for Mr Bright? Does he have any control over the situation? How does he react to changes in time and place?

  3. What does this mean for Mrs Bright – how does she react?

Discussion

  1. Mr Bright's illness places great demands on his wife but they are determined that he should stay at home and so his care is shared between their home and a day unit. Mrs Bright rises early and is in constant attendance on her husband. I don't know about you but I felt quite tired listening to her speak. I could almost hear the relief in her voice when she said ‘By 8 o'clock I know June's going to come’. In this case, even though Mr Bright is seen as the client who June comes to ‘wash and dress’, it is also Mrs Bright's needs that are being met.

    June is one of three home carers who assist Mr Bright with getting up and going to bed. June says that she ‘doesn't do anything for Mrs Bright’ – well not in the official sense of the word. But listen to Mrs Bright say ‘It's such a relief. It's lovely to have all this going on in the house’. Here care is shared, June knows that her work only makes a ‘temporary difference’ … ‘you can't make a permanent difference but you improve things for a while’.

    Mr Bright also attends a special day unit for older people with dementia. But it seems again that Mrs Bright's needs are central to the provision of this service. Brenda Masters says ‘Alan's been coming here since January. He started off coming here three days a week which very quickly went to five days, the need is very great there for Pauline, his wife, to have some time to herself really, she was getting very tired, very stressed’.

  2. For Mr Bright the consequence of this shared care is that other people attend to him in his own home and he also leaves it for part of the day. His condition has meant that he has had little control over the situation. Care has been provided to support Mrs Bright in her caring. However, this has also meant that Mr Bright has lost some of his personal privacy. He is now assisted in a number of intimate tasks by a formal carer who has access to his own personal space. You will remember how June coped with this invasion of privacy as a care worker.

    A bus comes to take Mr Bright to the day unit, so at this point he becomes someone else's responsibility. How does this change of place affect him? Well it's difficult to tell but listening to Brenda Masters at the day unit we do get a sense that he feels disoriented and dislocated. She says that he needs a lot of reassurance. We noted earlier in the unit that many people feel disoriented and anxious in unfamiliar settings; however because of his short-term memory loss, the day unit may seem unfamiliar to Mr Bright every day. Every day he may have to negotiate people, place and spaces as if for the first time. Brenda says:

    We welcome Alan as he arrives off the bus. He needs guiding into the unit, he's quite disorientated and he may go off down the drive. We encourage him to sit down and have a cup of tea and calm him down because he's quite anxious, we'll sit with him and try to do something on a one-to-one basis. He does enjoy talking but finds focusing on any sort of topic for a length of time quite trying. He gets lost and confused and his mind blocks. He likes to get up and walk around – he's quite an active person, he has a lot of energy. During the course of the day he requires a lot of reassurance and orientation.

  3. For Mrs Bright, Mr Bright's absence means a breathing space. It gives her some privacy. She attends to herself – moving the main meal of the day to lunch time so that she can cook and eat properly; going out (on this day to the Carers Support Group) and spending time on her hobby, playing the piano.

Chatting in the day room

Mr Bright has to face change on a daily basis, moving between individual and group care. While we do not hear about it here, he also goes for the occasional week's respite care in a nearby residential care home. At the time of the interview Mrs Bright told me that a recent experience of respite care had not gone so well: Alan had been to another home which was unfamiliar and this had unsettled him. Familiarity of place and being able to orient yourself is all part of feeling in control over your everyday life. For Mr Bright, whose illness creates further disorientation, familiarity of place and routine are even more important.

The Brights’ routine now includes shared caring to meet some of their different needs. Yet at the heart of their situation is a determination that Mr Bright should remain living as much as possible in his own home maintaining some continuity in his life and familiar surroundings.

Dementia and Alzheimer's disease

Dementia is a condition characterised by a progressive loss of mental abilities accompanied by changes in behaviour and a gradual decline in the skills needed to carry out ordinary daily activities. The likelihood of developing dementia increases as people get older. It affects less than one person in a thousand of those below the age of 65 and between four and five in a hundred of those over 65.

In the over-65 age group there is a strong increase in the rate with age: about 2 per cent of those aged 65–75 suffer from dementia, rising to over 20 per cent of those over 80. It is estimated that there are 750,100 people with dementia in the UK (Alzheimer's Disease Society, 2001).

There are a number of different types of dementia. Alzheimer's disease is the most common type accounting for 50–60 per cent. The disease was first described by Alois Alzheimer, a German neurologist, in 1907. Symptoms vary from individual to individual. In the early stages the person may be more forgetful of recent events, more likely to repeat themselves in conversation, less concerned with activities or other people, less able to grasp new ideas or adapt to change, more anxious about having to make decisions, or more irritable or upset if they cannot manage a task.

As the disease progresses, loss of short-term memory is likely to become more obvious and people often become confused about time and place. In later stages they may no longer be able to recognise those who are close to them and become increasingly dependent on others for care.

(Adapted from Alzheimer's Disease Society, 1997)

At this point it is worth noting the similarities and differences which exist between the pattern of Mr and Mrs Bright's lives and Sabrina and Tristan, the children who spend parts of their day at the childminder's house. While their needs are very different, both the children and Mr Bright have to make transitions between different people and places.

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