Case 35: Elizabeth
Social, cultural and historical context
Elizabeth, who is white British aged 74, lives in a four bedroomed council house in a deprived inner city area. She was widowed a year ago. Her grandson, Steve, aged 31, has lived with her since he was a teenager. Elizabeth has seven children aged 51 to 41. She brought them all up in a 'two up two down' terraced house not far away, with no bathroom and no hot water. At the moment her eldest daughter Jane and her husband Bruce are staying with her because they are between homes but will move out in the summer. Elizabeth was a secretary/book keeper in her working life. She really wishes she was back at work she misses the responsibility and the challenge to her brain.
Participant's experience of ageing and ill health
Elizabeth has chronic obstructive pulmonary disease (COPD), for which she takes domiciliary oxygen. She also has very painful knees due to Paget's disease (a condition that leads to enlarged, deformed, painful bones). When first seen, she has her foot up on a footstool because of the Paget's disease. She also has a bruise on her leg where she walked into the corner of a coffee table.
Elizabeth can get herself up and dressed and is able to make drinks and meals without difficulty.
People in this participant's life
Currently, Elizabeth's daughter Jane and son-in-law are living with her and that daughter takes her out shopping regularly. Elizabeth's grandson Steve, who is living with her long term, does all the cleaning. Elizabeth has a brother whom she does not see very often but she went on a week's holiday with him and his wife last year.
Several neighbours attend to Elizabeth in different ways. One, Kevin, calls every day (sometimes twice a day) to see if she needs anything. He also goes to the post office with her. She knows her next-door neighbours Kath and Peter quite well. Elizabeth says she gets on with all her neighbours. She says most of the neighbours here were also her neighbours when she lived on the other side of the suburb. They all get on well and she could ask them to do anything for her. She says that workmen who come to the area say they love coming here because it's "like the olden days, with neighbours. Everybody gets on with everybody else and they're helpful."
Elizabeth is in regular contact with several health professionals, including her GP, the COPD nurse ("she's lovely, she really is"). The COPD nurses visit but not very often unless she is ill, when they come every day.
What matters to this participant?
Elizabeth's health matters a lot to her. If she could have one wish, it would be to have her health back. Because she now needs oxygen and a wheelchair, it is very difficult for her to go out unaided, though she says, "I hate staying in" . She used to love walking and really misses that.
Her daughter Teresa takes her to bingo twice a week. She went on her own last week, because Teresa couldn't go. She sat on her own and didn't feel like mixing with anyone else but she still enjoyed going out. It cost £3 and she won £60.
Right now, daughter Jane is staying with her, so can take her out shopping and to the Post Office regularly, but when Jane goes travelling next month, Elizabeth feels she will be stuck at home apart from her trips to bingo. Currently, she is enjoying the company of Jane and Jane's husband: "I couldn't ask for a better son-in-law if I tried… he's brilliant…he can put a pan of tater hash on."
Whilst many of her children live locally they are either too busy to take her out regularly or have health problems themselves (two of her other daughters have mental health problems).
"I was telling my son the other week, if it wasn't for Jane, I'd never get out, and none of you lot come and ask if I want to go out, apart from Theresa to the bingo…I didn't get any response. I mean Jane goes next month and I won't get out at all. But I will if I get a taxi here and a taxi there….. I don't think some of them [children] know I've got a wheelchair. I mean Nigel came last week and I told him. He took me to the bank…. I suppose they do really. It's Amy and Richard and Carol I don't see much of."
Elizabeth likes visitors. She chats a little to the neighbours over the garden wall. She says, "[I want] company - certainly not money. My uncle died last year and left me with a considerable amount of money [£30,000] so I could go on holiday but I've nobody to go with. I could go anywhere. I think 'all that money' and I'm just sat here."
She was recently told by someone (she can't recall who) about a day care centre for people with COPD. There is apparently a waiting list but she is very keen to go: "I'm always glad to get out - meeting people." Last year she went all the way to Australia for a nephew's wedding and enjoyed the trip; she has a brother and a sister in Australia.
Elizabeth says she gets "down" but not depressed because the company of relatives and neighbours lifts her mood. "When I get down, I look over there at June's [neighbour], now June is on her own. I mean on her own, she doesn't have anybody coming and no relatives. So when I get down I look over there and think 'oh poor June', at least I've got people coming and that lifts me up a bit"
Elizabeth mostly spends her days watching TV (or at least, with the TV on in the background for company), doing puzzles in magazines, using her laptop and pottering about the house. She used to enjoy gardening but is no longer able to do this, but she does tend her indoor plants. Elizabeth sometimes goes to the supermarket by taxi or the local link bus service.
She spends a lot of money on taxis. Local Link only goes very locally, so is not suitable for every journey, though she uses it quite a lot. She could probably get the wheelchair on the link bus, but she has never done so.
Technologies in participant's home and life
Elizabeth has home oxygen. She used to have telehealth but got fed up of using it so sent it back (see below). She has never had a telecare alarm. She also has her wheelchair, a walking stick, various rails to help her move around the house, and a key box.
Elizabeth has a laptop which she uses for emails, Facebook and keeping in touch with her brother and sister in Australia. She looks on the Internet for information - for example, she has been browsing sites with a view to getting a new wheelchair:
"I want to get myself another wheelchair because this one is absolute crap. I want a lightweight one. It's easier for my daughter to push. We were looking for one yesterday, we went to B&Q and we went past this wheelchair centre, but we didn't have time to go in so when I came back home I looked on the internet at that wheelchair centre and I saw a wheelchair there that I would like."
Materiality and capability
Elizabeth has been told to use the oxygen for 15 hours a day. She has it on all night so she doesn't have to have it on too much in the day. She does not have set times for the oxygen, she just uses it when she needs it. Today, for example, she is going to the Post Office with her neighbour. She has a small cylinder to take out with her but she uses the large cylinder for an hour before she goes, because she does not want to be out of breath. She is going in a taxi with her neighbour, and he is not well enough to push her wheelchair so this excursion will be quite demanding for her.
When she goes to bingo, her daughter Teresa carries the small oxygen cylinder. If she is out in the wheelchair, it's on the wheelchair but sometimes she goes out without the wheelchair and without someone to carry the cylinder, and that is more difficult.
Elizabeth is not very mobile. She comments that her grandson has used her laptop and left it upstairs. She is frustrated that she will have to go upstairs and get it - a significant physical challenge for her. She talks about other small frustrations - such as not being able to get the safety cap off the bleach bottle and not being able to put her own bin out for emptying (and the bin men do not come and get it so unless someone else puts it out, it doesn't get emptied).
Elizabeth says she used to have an armchair with an electric footrest. She found it very comfortable but she got rid of it because she felt it was dangerous for the great grandchildren - she was worried it would fall on them if they fiddled with it.
Elizabeth finds it hard work having a bath and a shower. The shower is over the bath so she has to step into the bath which is hard work. She just has to have an 'all over wash'. She finds it embarrassing not managing to have a shower when she is examined by the nurse. Elizabeth explains that when the Housing Association refurbished the house about 12 months ago and put in a new shallow style of bath she found she couldn't get out of it. So Elizabeth has not been able to have a bath since then. She has a bathboard (but not an electric bath seat) but she says she wouldn't have the energy now to run a bath herself.
Real incidents of using (or choosing not to use) an ALT
Six months ago, Elizabeth decided to stop using her telehealth equipment (oximeter and blood pressure machine), which she had had for about 6 months. It didn't break down, she just chose not to have it in the house. "I just couldn't be bothered with it. It just got on my nerves every morning." She says " I didn't know why I was doing it."
When asked if it was useful knowing what her oxygen levels were, she replies, "Not really." In contrast to Bonnie (case 34), Elizabeth does not talk of a close and trusting relationship with Gina from the telehealth monitoring centre. She says that she never had a call from Gina asking her to re-take her readings or advising her to see a doctor or nurse.
Elizabeth didn't speak to anybody about not using the telehealth equipment. She just stopped using it. Nothing happened, she says. The researcher asks if they rang up to ask her why. No, she says, nobody said anything. They came and took the equipment away eventually. Did the nurses comment? Elizabeth says no.
Comment
This case affirms a number of themes seen in other cases in this sample. What matters most is human contact and getting out of the house, for which the older person is dependent on the goodwill of their relatives and neighbours. Being sick and disabled is tiring and time-consuming, and interferes in both large and small ways with the person's desires and goals. Neither telehealth nor telecare equipment enables the person to achieve what matters to them, though simple technologies like a wheelchair offer some potential.
Elizabeth is interesting as a case of someone who abandoned telehealth. From the limited clinical information, it appears that (in contrast to Bonnie, case 34), she was getting no useful feedback from the monitoring because her readings were rarely if ever outside the normal range, hence the use of the equipment never led either to reassurance or to advice to change what she was already doing. Elizabeth was not anxious about her breathlessness, and did not tend to seek medical input. Perhaps, simply, her condition was not clinically severe enough to merit daily monitoring.
Another theme illustrated briefly by this case is that technologies need not merely to 'work' but to fit with the totality of the individual's life. Elizabeth had to get rid of a chair with an electric footrest even though it suited her own needs, because it was not compatible with the visiting great-grandchildren. Other participants in our sample talked about the need to train their great-grandchildren not to play with the Tunstall alarm box.