Case 22: Mrs K
Social, cultural and historical context
Mrs K (who prefers not to be addressed by her first name by strangers) is an 80-year-old retired White British nurse, the daughter of a soldier. She travelled a great deal in her youth. She has lived in this house (inherited from her mother) for about 30 years. Mrs K is a widow, her mother died 16 years ago and she has lived alone ever since. She remains active in her community and is a member of an older people's advocacy group. She sees herself as a spokesperson and advocate for other older people, especially in relation to assisted living needs.
Participant's experience of ageing and ill health
Mrs K's medical history includes severe visual impairment due to a retinal condition in both eyes that has been progressing for about four years. She is not sure what the actual condition is called ("Instead of being nice and red it's not there really"). Everything is dim and blurred; she needs large print and a magnifying glass. The eyelids are flaky from blepharitis and her eyes are dry; she takes ointment and drops but her GP says the condition will never clear up.
In addition, she had childhood polio, which affected her legs. She walks with a bow-legged gait that is slow and awkward. She gets pain in her knees, which limits her mobility at times ("It will come out, and it takes some time to go back in. At the moment it's playing up… It makes noises and you can feel the cartilage moving"). She also has hearing impairment in one ear, and a chronic cough (she is a smoker).
Mrs K has had one fall, by the front door, before the grab rail was installed. She missed the step and tripped but did not hurt herself. She says she has had many near misses where she has tripped, all over the house, but not fallen. She attributes the trips mainly to being in a hurry and not putting her slippers on properly.
Mrs K says she wishes there was a system for older people, a bit like the old health visitors for children, by a nurse or occupational therapist, to review how things are and identify any new needs not being met. This would be both from a health and social point of view, and would include giving advice ("including telling somebody who had sling backs on, well it's your own damn fault you fell over").
People in this participant's life
Mrs K has a daughter, granddaughter and four great grandchildren who all live about 200 miles away. She had a sister, with whom she was close as children, who emigrated to Australia in the mid-1960s, and whose children still live there. One of these Australian relatives came to the UK and stayed with Mrs K for 6 months. They are still in touch by email – the relative sends emails to Mrs K's daughter, who telephones Mrs K to read the emails. Mrs K then tells her daughter what to say back in the next email. Whilst email allows her to keep in touch with relatives the other side of the world, she was upset to hear of her sister's death by this medium. The younger generation in Australia do not keep in touch much ("I'm just a name, an old picture… and they've got their own families").
Mrs K's most regular visitors are her two "helpers", whom she recruited by word of mouth and pays privately. They do a total of 8 hours work a week. One does mainly cleaning. The other does gardening, making phone calls, writing out a shopping list which Mrs K dictates, reading out letters and helping with correspondence ("what I want, not what the rules and regulations specify"). They are cheaper than if arranged through Social Services, and they take initiative (for example one took down all the ornamental plates and cleaned them without being asked). Mrs K trusts these helpers: she gives her credit card to them to order shopping over the phone.
The helpers are very good at customising their work to Mrs K's needs. For example, Mrs K's television "went" (i.e. broke down) a couple of weeks ago. Mrs K called one helper, Louisa, who said she had been in Tesco's that day and seen some televisions on sale. She said you've had the TV a long time and got lots of extra boxes (Freeview) – why not buy a new one? Mrs K followed this advice – Louisa bought the TV on her next visit to Tesco's and liaised with the Tesco staff to arrange installation and interfacing with Mrs K's existing technologies.
Mrs K says she is lucky to have her helpers, whom she thinks of in some ways as friends. They help with anything that she asks for. She sees them more as equal partners, rather than her being needy and them providing care. They provide more than basic care, and show respect. They don't talk down to her (as "carers", Mrs K implies, normally do). She gives the example of a plumber who visited a while ago to do something in the bathroom upstairs, and one of her helpers was there to ensure that he did a good job.
Mrs K's helpers are her only regular face-to-face social contacts apart from her weekly visit to the hairdresser where she enjoys a "natter" with the other clients. The hairdresser, where she has gone for 30 years, is closing down and Mrs K is considering having her hair done at home. But going out to the hairdresser is "nicer" and good for "the gossip you pick up" – mainly about local public services which is her interest.
The telephone is very important for Mrs K. She has a "gang" of friends that are always calling each other up to pass on information and "gossip" (e.g. about offers at Tesco's, news about a new mobility shop at the local shopping mall, how long it took to get an appointment with the GP). Mrs K's "gang" consists of former colleagues from the committees she used to sit on. The numbers are falling ("Most of them I'm afraid are dying off. But there's still a few of us left. … We are more or less in our homes, but our [telephone] wires go hot at times".)
What matters to this participant?
Home and garden matter to Mrs K. The house is well kept, though Mrs K now has difficulty with housework. The front of the house has an impressive display of hanging baskets. The garden is full of fruit trees and home-grown vegetables.
We go out into the garden and pick and eat some white raspberries and blueberries. Delicious. A bag of compost has broken open and is lying across one part of the garden – Mrs K thinks it was probably a fox. She says she will have to call someone to come and clean it up, or probably wait for Louisa [helper] to come. She takes me on a tour showing me all the trees and plants. She eats all her own fruit: "My Scottish blood comes out. I'm not spending!" (Field notes from home visit)
Mrs K used to enjoy reading, but her vision is no longer good enough to read comfortably. She misses being able to "stretch out on the sofa with a good book".
Mrs K still likes to go out. She goes shopping every Saturday by taxi (she books a local one and pays £7 each way). She misses travelling abroad. Because her father was in the army, she grew up in north Africa and the Far East. This background is evident in her love of order and discipline, and in her recollections of being a no-nonsense nursing sister who led her team in a traditional (implicitly, hierarchical and rule-governed) way. She compares her current life unfavourably with the past, when older people were treated with more respect.
She positions herself as a spokesperson for other older people ("I've been given a list as long as your arm about the difficulties of living alone, not being 100% well. There's quite a few I'll be talking on behalf of if that's all right"). Later, she explains to the researcher how important this spokesperson/advocate role is to her: "Being told [about what's going on], and then you can tell others, is lovely. You are still part of life."
As an ex-nurse, Mrs K places high value on face-to-face human contact between health professionals and people who are sick. She considers that many of the current ills in the NHS are caused by nurses being "[academically] educated rather than [practically] trained".
Mrs K's helpers matter to her. She distinguishes these excellent helpers from formal carers, who are bound by rules and regulations about what they can and cannot do (often not what the older person actually wants or needs them to do, such as cleaning windows), and questions the quality and consistency of care (giving examples of workers who do not stay the allotted time because they have to get to their next appointment or who are unprofessional).
Social contact is important to Mrs K. Whilst she has her "gang" of friends who keep in touch by phone, she knows only a few people in her street. Many people have moved away since she arrived here in the early 1980s and she knew "everyone". While she describes her next-door neighbours as "a lovely Asian family …I've known the girl, the wife, since she was a young girl in a short skirt, and now she only dresses in the Muslim fashion", many people do not stay long and Mrs K says she finds it takes time to establish relationships.
Mrs K's family matter to her, though she knows they "live their own lives" and don't often have time to visit her. Mrs K cannot visit them either, because the house is not well adapted for her needs (no downstairs toilet for example) and they are very busy with their jobs and activities. Conversely, Mrs K matters to her family. She partially supports her daughter (who also has a mild disability now) and paid towards a wedding for her granddaughter who at the time did not have a job. When her daughter came to stay last year, Mrs K had to fund the train fares. She says that many of her friends get asked for money by their children and grandchildren.
Religion matters to Mrs K. She used to attend a local (Church of England) church but in the past two years she has felt the people there have become "cold". For example, Mrs K's daughter used to print off large font copies of the words of hymns for Mrs K (and several others in the congregation). However a new vicar arrived and did not approve of this, and tried to organise large print versions of the service to be made by the church and given out. On another occasion she went to the altar to take communion and two people helped her, which she said was "too much" and drew attention to her (one helper was all she needed). Because of small incidents like this, Mrs K feels less welcome at church and rarely goes now.
Technologies in participant's home and life
Mrs K's home is fairly well adapted to her living needs. Many of the adaptations (such as converting the outdoor toilet to a level access downstairs one) were originally installed for her mother. She has had various grab rails and steps installed, one or two by the local authority but several more bespoke alterations by someone she knew who did odd jobs and would listen to exactly how she wanted it. Mrs K has a large, well-equipped kitchen in which her daughter has made some adaptations (e.g. placed a red mark on the gas oven dial to mark 200 degrees so Mrs K knows how far to turn it up).
Mrs K has telecare – a pendant alarm and environmental sensors for smoke, flood and gas, all provided by Tunstall. She can't remember how she came to get them – she thinks someone got in touch with her because she was over 65. There is also a burglar alarm with a movement sensor, separate from the telecare, which Mrs K bought herself. If she presses the alarm, the call centre will contact one of two neighbours or one of her helpers. All are keyholders. Mrs K also has pull-cords in the bathroom and bedroom, and a landline telephone but no mobile phone.
Materiality and capability
Mrs K walks indoors without the use of aids but needs to hold onto the wall or other objects ('furniture walking'). She has a wheelchair and a 4-wheeled walker with seat, which she uses for transporting meals and hot drinks from the kitchen to her living room armchair (a "godsend"). Mrs K says that her helper took the initiative and instigated getting the wheelchair, so that they could go out shopping together. The helper's mother had one and she advised and helped Mrs K to get it. Before this Mrs K had not considered getting one.
Mrs K still has some vision, though it is gradually fading. She has a pair of double-lensed magnifying glasses that she uses for watching TV, provided from the Sensory Impairment service from the Local Authority. She "hates" voice recorders so will not use one; instead, she waits till one of her helpers is present and dictates what she wants to write. She can walk around at home as she knows her way around and where everything is. Outdoors she has to rely on someone else to help her. For example, at the hairdressers, they always put her cup of coffee in the same place and say there it is, on your right. She has a (round) magnifying glass which she takes everywhere with her, and wishes she could get a bigger one and/or one that is oblong so she can read more easily. She also has a liquid level indicator to help with filling cups but does not use it because her mugs are white and she can see tea and coffee well enough.
Mrs K is well organised, with a strict routine, and plans her life carefully so as to get maximum value from the support on offer. For example, her local supermarket has a scheme where you can book one day in advance for a staff member to help you. As she goes every Saturday, they now have a regular arrangement and she does not have to book in advance. Mrs K uses a wheelchair provided by the store with a trolley that attaches to the front, pushed by a member of staff. A lot of the "lads and lasses" there know her now.
Speaking as an advocate and representative of older people in relation to assistive technologies, Mrs K attributes the low uptake of such technologies to two factors: insufficient promotion and awareness of their benefits, and insufficient training of older people in their use. More time needs to be spent, she says, during installation and deployment of the technology to give people time to get used to it. A one-off explanation is not sufficient, people forget things – and you need someone you can contact afterwards for support. Perhaps unsurprisingly given her previous committee role, Mrs K appears to have a good awareness of the range of products available, including telehealth.
When Mrs K first talks about emails, she cannot think of the word 'computer'. The researcher prompts her. Then she says that she is scared of them, which is why she can't even remember the name. She says, "I ain't mechanical" and says she abandoned her mobile phone because she got "in a stew" trying to use it (for example, she never grasped the memory function for storing or retrieving numbers, and she could not retrieve voicemail messages) and always forgot to take it when she went out. She likes her landline phone because it "just makes phone calls".
Despite her low confidence with new technologies, Mrs K loves her telecare alarms. It is no problem at all because it is so simple – all she has to do is press the red button and then a series of actions are taken by other people. It is simple to understand and operate. And, she says, it only costs £3/month for a technology that allows you to live independently! Mrs K says she was "gobsmacked" by the number of people who gave their telecare back when these modest charges were introduced.
Real incidents of using (or choosing not to use) an ALT
Mrs K has never had to press her pendant alarm in an emergency, but has done so by accident several times. Once when she went to bed wearing the pendant alarm, she turned over, and it went off. The phone by her bed rang, and she answered the call centre. The people at the other end were very nice, not cross at all, and reassured her. She is impressed that they showed her respect in their form of address.
"It's marvellous …. you never feel with them that you're an idiot … you feel safe, the way they speak to you … they never say you are a nuisance. […] They don't immediately call you by your first name. And as you know our age groups, it would have been very rude for a young person to have called us [by our first name]."
On several occasions, Mrs K's pendant alarm got entangled with the crucifix she wore round her neck. Once it set the pendant alarm off, so Mrs K decided to stop wearing her crucifix ("I think this [the pendant alarm] is more valuable, in a sense, you know what I mean?"). So now she keeps her crucifix on her dressing table ("I look at it from time to time, and I say 'sorry love, but I haven't forgotten you'. Something like that, daft."). She says a friend (with the same crucifix problem) tried a bracelet alarm but it got in the way when washing up. So the friend went back to the necklace and hung her crucifix over the bed, like when she was at school.
Mrs K describes her flood detectors as "lovely little things". The one under the kitchen sink went off one Sunday morning. The call centre called to say that it had gone off, though they could not say which one. It turned out that a hose from the dishwasher had perished, and water was dripping under the kitchen sink. Mrs K then phoned a friend, who phoned a friend, whose husband was a handy man ("like most husbands should be"). He came round, identified the problem and fixed it.
The smoke detector also went off once, when Mrs K thought she had put something in the oven but had turned on the grill by mistake. She went out into the garden and heard the phone go. As she came back in she realised there was some smoke in the kitchen (to get to the telephone in the living room she had to walk through the kitchen). But she walked past the oven to answer the phone first (it was the call centre to alert her – "She was cheeky, and said, enjoy your burnt offerings"), then came back to turn off the grill.
Comment
Like many others in this sample, Mrs K illustrates the phenomenon of inexorably progressive boundedness (contraction of one's social and geographical world) resulting from progression of incurable physical impairments. In Mrs K's case, boundedness has resulted from both her own impairments and those of her friends (not only is she too impaired to visit them, the converse is also true).
This case is notable for the role of Mrs K's "helpers". They are privately hired because Mrs K wants them to do what she wants (she gives the examples of cleaning the windows and helping her deal with correspondence) rather than keep to a restricted list of tasks as set out in a block contract or service level agreement. Importantly, Mrs K likes and trusts her helpers, who appear to care for her (in the emotional sense) and show initiative. It is interesting to see how this relationship of trust and a brief to take initiative seems to have allowed Mrs K's helpers to fulfil the 'bricoleur' function in relation to technologies – Louisa can suggest new technologies, purchase these on behalf of Mrs K, customise them (especially by linking them with existing technologies in the home) and mobilise input from others when needed. Mrs K believes, perhaps correctly, that if she used the standard social services home help service, she would not get this level of personally customised service.
Mrs K admits that she "ain't mechanical", and she has never got the hang of mobile phones, but interestingly she is a skilled and confident user of the telecare alarm. On the basis of her past experience with accidental alerts, she is aware of the human presence at the call centre and values the respect and reassurance of the call centre staff. The simple design of the alarm means that technology is not a significant barrier, and she considers the device so crucial to her safety that she is happy to make the trade-off of no longer wearing her crucifix. Whilst Mrs K has little sympathy with the concept of the virtual ward (which she sees as 'high-tech' replacing 'high-touch'), she appears to classify the alarm as enabling human contact rather than replacing it. As such, she is extremely positive about it.
It is also notable how Mrs K's strong and determined personality – along with her past role as a senior nurse, her high health literacy and her well-established, telephone-linked, social network – helps her overcome her physical limitations and mobilise others to assist her with installing and operating technologies. Though disabled, she is not at all passive. Many of the adaptations to her home have been made by hired private contractors to whom Mrs K has given explicit instructions about what to install, where and how. When her flood detector alerts her (via the call centre) to a leaking pipe, she phones a friend who phones a friend whose husband comes round to fix it. This example contrasts with some other cases in this sample who lack the same combination of awareness, determination and social contacts and whose homes are striking for the mismatch between what is needed and what is actually installed and working.