ATHENE:

Case 11: Eda

Social, cultural and historical context

Eda is a 91-year-old white British woman who now lives alone in a privately owned 2 bedroomed house on a large social housing estate. She has lived there since 1949. Her husband died 25 years ago. She worked in a textile factory from the age of 14 until she had her children. She worked as a school dinner lady for 25 years when her children were growing up. She is Roman Catholic.

Participant's experience of ageing and ill health

Eda has arthritis in her knees, legs and neck. She also had a series of mini-strokes when she was in her 80s. She has had cataracts removed and has glaucoma, and has also had her thyroid removed. She has high blood pressure and high cholesterol. Eda also suffers occasionally from migraines. She had these a lot when she was younger but now she only gets them every few months. Eda is general happy with life even though she has several illnesses.

At the time of the study, Eda’s legs are very swollen and this is affecting her ability to walk around the house. She is wearing very strong support ‘knee-highs’ to help the condition, and support workers are coming twice every day to put the stockings on and take them off. Eda also has anaemia and keeps Vitamin B12 in the fridge, and syringes and needles in the care plan file for the injections given by the nurse from the Active Case Management Team.

People in this participant's life

Eda has four children, three of whom are retired. They are all very helpful and attentive. One daughter lives a 45-minute drive away. She rings Eda every day and visits once a fortnight in winter and once a week in summer. A son lives a 20-minute drive away. She sees him once a week and he does most of her shopping. He also takes her out on trips or to spend time at his house. One son who lives abroad phones twice a week and visits every few months. Her younger daughter lives about 200 miles away and visits every month. Eda has 11 grandchildren who call in from time to time.

Eda also has neighbours and friends who help her out with shopping; two of them are in their 80s. One friend brings her communion from the local Catholic Church. Eda also has a visit once a week from the Nurse Consultant of the Active Case Management Team to see how she is, even if she isn’t ill.

What matters to this participant?

Family is very important to Eda both socially and because of the help they give her. She feels very cared for by her family and feels quite satisfied with her life. When her son comes over from abroad the whole family go out for a meal together. There are usually about 8 or 10 of them and they go a little way out of town because they know Eda likes to see some countryside.

It’s important to Eda to do a little bit of housework because she doesn’t want to be sitting doing nothing. Her daughters do the heavier housework when they visit.

“I just potter a bit because you can’t get down to the nitty gritty…I couldn’t sit here all day, I’ve got to find something to do, a little bit”

Company matters to Eda. One of the sad things about ageing for Eda is that all her six siblings have died, as have some of her good friends. Many of her friends are too frail to visit her. She enjoys the visits from the researcher, though she worries that she is talking too much.

“I think we take advantage when anybody comes in, then we natter more than we should…and then when you’re on your own you talk to yourself”

She does get bored and fed up but she’s resigned to her situation (“what can you do?”). She feels she does well for visits from the family, though.

Eda has showers but hasn’t had a bath for two years and she’d like to because she thinks it does you good. She says she would love to go for a swim too, because she’s always loved swimming. She is really looking forward to having a bath (“and put some Radox in”) when her bath chair is installed.

Eda greatly appreciates the support workers and nurses from the Active Case Management Team. She loves the fact that people call to ask her how she is: it makes her feel reassured.

“That is a good thing for me, Lucy (Nurse Consultant) coming in, and what would you do without them? Without people, eh?”

Religion matters to Eda, and she is grateful to the friend who brings her communion. There aren’t enough priests these days to enable them to visit everyone at home with communion. Eda doesn’t want to be seen in church in her wheelchair because she feels it will draw attention to herself, she would feel embarrassed.

Going out matters. When she was younger, she was never in, she was always out dancing or out with friends and family. She used to go out on pensioners’ day trips but she can’t do that now because of her mobility problems. She thinks the pensioners’ day trips have stopped now anyway. She could go to her son’s abroad but she couldn’t stand the travel. She last went about five years ago. She misses trips to the local shopping centre.

“Jean and I very often used to go over and have a cup of tea, do a bit of shopping, and all the benches and sit there, and watch the world go by, and you’d always have a natter. There was always somebody, even when I was on my own, if Jean was in the hospital or something… I would still go over and sit on the benches and somebody would come and talk to you. It was nice, I liked doing that, it’s nice isn’t it? But you can’t do those things so you just set your mind to it and what can you do? You could go funny if you worried about it too much, couldn’t you?”Eda used to like going to the library too but now she has to rely on friends and family bringing her books (“that’s what keeps your brain going”). She used to enjoy knitting but can no longer do this because of the arthritis. Now, the television is very important to her, especially because she can’t go out much.

Technologies in participant's home and life

Eda has a pendant alarm with a key box on the outside of the house. She also has a tray trolley, walking stick, two sticks for picking things up off the floor (one in the kitchen and one in the living room) and a bath seat. She also has a small rigid plastic step to help her get into the bath (bought by her daughter), which she finds extremely useful. Her daughter bought it for her after seeing it in a magazine.

By the time of the last interview for this study, a bath chair has been delivered to the house but has not yet been installed. Also during the study, a perching stool, ordered by the Nurse Consultant, has arrived and the Nurse Consultant has adjusted it to Eda’s height. She is very pleased with all these helpful gadgets (“I never realised all these things you could have”).

Eda has a TV but no computer. She has an electric reclining chair which takes the weight off her feet and is especially useful for her swollen legs, although she says she couldn’t put her legs up when people are there because it would be too undignified.

The Nurse Consultant has applied for a stair lift for Eda. Although she finds it difficult to get up the stairs, she has not been classified as an ‘emergency’ so there is likely to be a long wait. The council are installing extra banisters while she waits for the stair lift. She feels this doesn’t make sense as the banisters will have to be taken out again.

She has an electric lightweight ‘carpet sweeper’ cleaner which she also finds very useful as she can’t push round a vacuum cleaner now.

Materiality and capability

Eda is sanguine about the physical limitations of getting older. She is impressed by the range of tools and adaptations available to help with these limitations, though the ones she finds useful are conventional assistive devices rather than technologies.

Eda finds it very difficult to get up the stairs to use the toilet. She and her family did consider a downstairs toilet but there isn’t any room downstairs to build one. She has been asked if she would consider a commode in the kitchen diner. Eda definitely doesn’t want this, she would rather struggle up the stairs. Eda isn’t even sure about having the stair lift, partly because she thinks it will block the front door and partly because the indignity of having to sit on a chair to get upstairs that bothers her. She consoles herself that the Consultant Nurse and her son have both said that it’s not for now, it’s for later.

Eda likes to cook for herself most of the time so thinks the perching stool will be very useful. She uses the tray trolley to take potatoes to the table so she can peel them and she uses it again to take her meal to the dining table. She doesn’t eat any meals, apart from sandwiches, in the lounge because she’s worried that she would ‘miss her mouth’. When she makes a cup of tea for herself she can manage to get this to the lounge by holding the cup and saucer in one hand and using her walking stick in the other.

Eda uses the bath seat to sit down for a shower. She feels quite safe doing this, even though the shower controls are outside the bath, but they are putting another grab rail in for her for extra safety. Her children tried to persuade her to get rid of the bath and have a walk –in shower but she didn’t want to get rid of the bath (“You don’t know if you’re going to be able to stand in shower anyway as you get older”).

She doesn’t have any aids to help her out of bed, and this is a bit of a struggle. When she gets up, she sits on the side of the bed for a while until she feels OK and then she grabs the chest of drawers by the side of the bed to steady herself and get her breath and “get my legs going”.

The Tunstall alarm is kept on a small table in the hallway. Eda doesn’t like the bright red light on the equipment so she covers this with a piece of card so she doesn’t have to look at it all the time.

Eda feels embarrassed having to use a wheelchair when she goes out. She had a good day out with her son recently. He took her to the park and she used the wheelchair to get around. “At first, I felt really, dead embarrassed in that. That was silly really because people just smile at you, or give you a funny look or whatever (laughs).”

Real incidents of using (or choosing not to use) an ALT

Eda has not had to use her Tunstall alarm but her son had to use the Community Monitoring Service when he couldn’t get a response from his mother on the phone. He rang the service and the responders went round to her house to check she was OK. She was fine, she had just forgotten to place her phone back on the receiver properly. Eda was very impressed with the service.

Comment

Like many participants in our sample, Eda’s personal, social and physical worlds are shrinking as her friends die or become unable to communicate with her and as her physical limitations reduce her mobility further. She has wise words of advice for people in this situation: get used to it, because you can’t change it. But Eda is relatively fortunate, since her “bored” life is frequently enlivened by a call from one of her many relatives or a visit from the Active Case Management Team or other support workers. When they contact her even when she is not ill, it makes her feel valued and cared for.

Eda’s case illustrates how the end user’s knowledge of the aids and assistive technologies available is important. Eda has only learned over the last 12 months through contact with the Active Case Management Team what kinds of aids and appliances are available to her, and how helpful they can be. Eda’s life could possibly have been made easier long before this if she had known what was available and how to get it. The input of an experienced Nurse Consultant here has been critical, as has Eda’s family, who know her circumstances and are also looking for things to make life easier for her. Whilst Eda has good cognitive capacity, she rarely goes shopping and has no computer. In this very common situation, information about the range of technologies available needs to be made available to family members, not just the intended end user.

Whilst Eda has an almost full complement of conventional assistive devices, she has very few technological devices, presumably because her Nurse Consultant either does not know about them or lacks the power to supply them. Perhaps also Eda’s complete lack of computer experience or skills mean that she is unlikely to engage with computer-based assistive technologies.

On one level, some of the things that matter to Eda (e.g. shopping, getting library books out) could be done online if only she had the skills, confidence and equipment. But on the other hand, what she enjoys about these activities is meeting people. Shopping is not just spending money on items; it is a social practice. Indeed, the quote above about sitting in the shopping centre suggests that “shopping” is more about watching the world go by and waiting for chance encounters with friends and acquaintances than actually buying anything. This has implications for the extent to which online shops, libraries and so on will be able to substitute for the ‘real thing’.

Eda illustrates how technologies in different parts of the home have particular symbolic meanings. A commode in the living room feels inappropriate, as does a chair on the staircase. She needs a lot of reassurance that the technology will be safe for her to use. The aesthetics of the technology is also important: Eda doesn’t like having to see the red light on the Tunstall alarm so she has covered it up.

Eda’s case also illustrates what Scambler has called ‘felt stigma’. She feels shame about her physical appearance and impairments, and feels that aids and assistive technologies are reminders of the ageing process. Eda does not go to church now because she doesn’t want to be seen there in her wheelchair and she feels embarrassed being out at the park with son in her wheelchair. This ‘public shame’ contrasts with her acceptance and appreciation of many (though not all) aids in the private sphere of her home.

Finally, Eda’s case illustrates that technologies introduced into the home go through a ‘liminal’ (neither inside nor outside) period after they arrive but before they have been installed and customised. A simple technology (such as a stool) is readily placed where it needs to be and adjusted to suit. But a computerised technology requiring more specialist input may remain in this liminal state for much longer.