Background
Methods
Recruitment
Data generation
Data analysis
Quality assurance
Results
Overview of findings
Participant pseudonym | Living Status | Marital Status | Survival Status |
---|---|---|---|
Mrs A | Offspring | Widowed | Survived |
Mr G | Spouse | Married | Survived |
Mrs W | Alone | Widowed | Survived |
Miss P | Alone | Unmarried | Survived |
Mrs B | Spouse | Married | Died |
Mrs R | Sibling | Widowed | Survived |
Mrs H | Alone | Widowed | Died |
Mrs O | Alone | Widowed | Survived |
Mr M | Alone | Widowed | Survived |
Mrs K | Spouse | Married | Died |
Mr C | Offspring | Widowed | Survived |
Mr I | Alone | Widowed | Died |
Mrs E | Alone | Divorced | Died |
Time point 1 | Time point 2 | Time point 3 | Total | |
---|---|---|---|---|
Single | 16 | 12 | 12 | 40 |
Interview Length | 25–95 mins | 30–95 mins | 30–85 mins | |
Joint | 5 | 6 | 3 | 14 |
Interview Length | 30–55 mins | 35–70 mins | 30–35 mins | |
Total | 21 | 18 | 15 | 54 |
Pattern 1: The coping narrative - managing to balance loss with adaptation
Striving for a new normal
”Once I get on my feet and into that taxi again, I’ll be up [to the city department store] like a shot - If I could just get back [to where I was]” (Miss P, TP1)“but I can’t do anything like the cooking I used to do and the baking, no, I can’t. So, so much of my life’s changed” (Mrs A, TP2)
“Well, I might get a bit better but, you know, every time I go in [to hospital] and something happens you never quite get back to where you were” (Miss P, TP3)“I’m getting more used to the fact that I’m not out now, I just say “well, it’s another day you won’t be out” and just sort of say “what will I do today” (Mrs A, TP3)“Well I think I am so lucky because [the fall] could have happened to me years ago and I would still have been damaged (mm hm) I suppose I would have been able to do more because I would be younger (mm hm) because my age has a lot to do with it too” (Mrs A, Time point (TP 3)
“Well I’ve always been a person with a deep attachment to the family and really since my husband’s illness my life really revolves around him and I think that’s what keeps me going” (Mrs B, TP1)
“Oh yes I miss the tennis terribly….oh it was my life,” “this week will be very hard for me because it’s Wimbledon and I have to watch it and never be able to go again and never see them” (Mrs A, TP1)
“Well, if it wasn’t for reading I don’t know what I would do – and television but I’m not all that keen [on television programmes], I mean, I like things like tennis on the television” (Mrs A, TP3)
Maintaining social connections
“And [we enjoy the church club] and the people are collected and brought to it, it’s just a man speaking or sometimes we have somebody showing slides or we somebody speaking on a very interesting subject………………..and all the old people are collected and taken to it” (Mrs R, TP1)“Oh, well… I’m a sort of social buddy, you know, I’ve always been one of a big family and……….you know, when I go with the girls in the bus they all said “oh hello, come on!” you know, the things like that and like we have a good laugh” (Miss P, TP3)
“And I can go back with her lot and with the other side [of the family] away back 200 years and name them all sort of thing and the ages and the dates and the stuff, and so she has and she’ll say “of course, great grandmother so and so” and she likes nothing better, when I go there she’ll get back into these subject, that is [she] really loves to do that” (Niece of Miss P, TP2)“They’re interested in the carers that come in and they want to know about them and they want to have this therapeutic relationship essentially” (Daughter of Mrs R, TP1)
‘I give a lot away to charity, I’m going to give £100 to the church. Because the roof’s falling to bits.’ (Mrs R TP1)
Focusing on living from day to day rather than looking to the future
“Because I mean although I say I’m nearly 90, you’ve got to expect these sort of things, I’m quite willing to live a long time if I can” (Miss P, TP3)
“I really just take life one day at a time” (Mrs B)
“They were thinking of doing some investigations about her bowel problem but they said “just leave it alone” (Carer of Mrs A, TP3)“And are you quite happy [about that]?” (Interviewer)“Yes” (Mrs A)“I mean she got out the hospital and she just…..they wanted to do [the endoscopy to investigate anaemia] again, and she just said no, there was no way and the [GP] came in the next day and he says “no, no” (Daughter of Mrs W, TP3)
“As long as I’m able to be in this house, I’ll be quite happy” (Mrs W, TP1)
“Whereas if you had no mind and a good body what would you do, you’d just go shuffling around wondering where you were, mind you you’d be quite happy doing that, but I wouldn’t be happy doing that I would rather be away than have that” (Miss P, TP3)“I’ve done a lot of [visiting people in a nursing home]” (Daughter of Mrs A, TP3)“And what are your thoughts on…?” (Interviewer)“Well, I keep away” (Mrs A)
Pattern 2: The struggling narrative - struggling to balance loss with adaptation
Searching for a cause
Mrs K Is going to be seen [at the hospital] then with a view to saying “look please tell us what’s going on, what’s the prognosis?” because we’ve failed to get a proper diagnosis” (Husband of Mrs K, TP1)“I’m just curious as to why your body….and apparently it looks alright, as it were, and yet it doesn’t work?” (Mr M, TP3)
“I can’t believe he’s like that, a fitter man you couldn’t find, I mean even when he retired” (Wife of Mr G, TP1)“I was telling [the researcher] that I played football every day” (Mr G, TP1)“‘She’s waiting for the next stage all the time when things are going to get better. I think she’s harping back to the past when she was much more able to manage” (Carer of Mrs O, TP2)
Futility and loneliness
“I’ve been used to working all my life and I’ve never bothered with anybody but I can’t get used to this sitting about (Mr C, TP2)“I mean actually of all my problems frustration is the main one, just not being able to do things” (Mr M, TP2)
“No I don’t see many [friends] nowadays. I used to go regular to the football, I used to travel all over but I don’t see anybody now” (Mr C, TP1)“But it’s a long day when you don’t see anybody” (Mrs O, TP2)
“Oh they’ve given up on me” (Mrs A, TP2)“I’ve been written off” (Mrs K, TP2)“I’ve been flung out” (Mr C, TP3)
Building fears
Moving to a care home
“Well we’d have to say the preconceived ideas we’ve got about nursing homes, it frightens the life out of us. I’ve just got a horror of it I’ve got a real horror of it, both of us” (Wife of Mr G, TP1)“We’ll do anything short of ‘A’ bankruptcy or ‘B’ going into a home” (Husband of Mrs K, TP1)“If I was…if the day came that I wasn’t able to look after myself but I was still compos mentis then I suppose I might have to do something like [move to a nursing home] but I don’t think I’d take kindly to it………I think…….I would just give up the struggle, quite honestly” (Mr M, TP3)
Developing dementia
“What you think is [seeing people with dementia in hospital] is this a view into the future and what’s going to happen to me and that’s what has upset me more than anything and you know am I going to end up like that?” (Wife of Mr G, TP1)“Just so long as I don’t go gaga” (Mr M, TP2)
Becoming a burden
“Mm. And you say about not letting your family down and keeping everything up for them. Can you tell me a wee bit more about what you mean by that?” (Interviewer)“Well, I don’t want to be a burden. They do a lot for me but, erm… [pause] I mean, the idea perhaps of going to stay because I wasn’t able to look after myself and in effect them having to nurse me, I wouldn’t want that” (Mr M TP2)“And I mean they must have their own activities to get on with and we can’t be a burden on them and that’s the LAST thing we’d want to be is a burden” (Husband of Mrs K, TP2)“We try not to be a nuisance” (Mrs K)“Well, who are you being a nuisance to?” (Interviewer)“Everybody else! (laughs) Family and friends. Everybody” (Mrs K)
“I’m not sitting with a lot of old folk with their heads on their chest you know” (Mrs O, TP1)“[One man in a nursing home] couldn’t stand it any longer I don’t think, stopped eating, turned his face to the wall and went, not that I was visiting him or close to him but I know of him well and that’s the sort of thing you dread, most people do” (Husband of Mrs K, TP2)“I mean, I still… as I say, it sounds ridiculous but like the [name of day centre], I feel so many of these folks are old folks, they’re old folks mentally and I don’t feel old mentally” (Mr M, TP2)
“I think that’s [the garden centre] stress-free because there’s old people there and, you know, he probably doesn’t feel conspicuous” (Daughter of Mr M, TP3)
“Well, I mean, I don’t feel ill in the sense of ……in that sense, it’s just this sort of tiredness and futility, you know, if I drop a thing it’s an effort to get down to pick it up kind of thing” (Mr M, TP2)
Death enters the accounts but remains distant
“Well we’re both in our 80’s, well I’m 95 and Mrs K’s 84, we don’t really have statistically great expectations of life you see. Sorry but you have to face it. If it is Parkinson’s disease there is no cure, there’s palliative treatment and it can be good for another four or five years at least” (Husband of Mrs K, TP1)
“I was looking perhaps stupidly, perhaps stupidly I was looking for a solution, if not a cure. We never found a solution” (Husband of Mrs K, TP3)
“Well I didn’t save her did I” (Husband of Mrs K, TP3)“Do you mean her life…at the end?” (Interviewer)“Yeah…I’ve said it again. I’ll say it once more; grief can be a selfish thing but there’s no selfishness about the efforts, I was totally dedicated to helping” (Husband of Mrs K)
Pattern 3: The overwhelmed narrative - losses overwhelm adaptation
Increasing physical difficulties
“How would you feel if the doctor said that you could try strong painkillers but you might have to be in hospital to see that it’s okay and doesn’t make you unsteady? How would you feel about that?” (Interviewer)“I don’t mind if they take away that pain. The pain, just the pain in my legs and that, I don’t mind” (Mr I, TP3)
Increasing social isolation
“I just want to be normal and to see people and have them visit me and to be able to go out in my wheelchair once in a while and talk to people” (Mrs E, TP2)“We’re the forgotten army” (Mrs H, TP2)“That’s what’s wrong to me, no matter where I’ve been, now I’ve got to this age all my friends are away, there’s none left” (Mr I, TP2)“People are very patient when they come and see you but they’re in with another one. That’s you, you’re going over a wall or somewhere and they’re on the other side” (Mr I, TP3)
Losing the capacity to adjust
“I don’t know, just deeper things, you know, he was on yesterday about the doctor, he hasn’t… he said “what’s actually wrong with me?”, I said “it’s old age” I said “and your heart’s not working properly” – “no, it’s not that” he said “it’s something, it’s sclerosis or something, it’s… I think multiple sclerosis, I’m not sure” and then he said “it’s the worst one possible that you could have and I know that, that that’s what it is but she’s not telling me that, you’re not telling me that” and I said “because that’s not the case” (Daughter of Mr I, TP3)
Struggling to hold on to an important issue
“I will not go into a nursing home, I won’t do it” (Mrs H, TP1)“I just want to live out my days in my own home” (Mrs E, TP1)“I’ve had to do that all my life, keep going. Discipline that’s the centre of everything, discipline. You discipline yourself to do something every day and you do it, no messing about. If you start to slip you remember ‘discipline….you’ve lost the place’ I’m a disciplined person” (Mr I, TP1)
“Aye, I told them, I says “one of these days” I says “I might need you but not just now. That’s right, I’ve had to be disciplined all the time, and discipline other people” (Mr I, TP1)“The old soldier” (Daughter of Mr I)“It’s as simple as that” (Mr I)
“I can’t do anything myself. Useless” (Mr I, TP2)
“I think he sees [having outside help] maybe as giving in” (Daughter of Mr I)
“And you see, I’m in a cage and I can’t get out” (Mr I, TP2)
“You feel you want to walk out there and walk under a bus” (Mr I, TP3)“Oh dear” (Interviewer)“You just get so……I get so frustrated and angry” (Mr I)
“My daughters fought to get me home; the doctor there said no, I had to go into a nursing home or a hospital where they looked after me all the time. I’m not an inmate” (Mrs E, TP1)
“No, I think it’s a lot to do with the fact that I’m in and out of hospital and the fact that I don’t seem to have the control I had; I’m one of these people that all my life I’ve wanted to be very much in control and…right now I feel though that everything’s just getting away from me” (Mrs E, TP2)
“But she was young and had a young slant, not er… It was a case of “well, you’ve reached an age where things will not happen now, you’ll have to just take things as they come and take it easy” – I wasn’t ready for that. That sounds selfish, I know, but I just wasn’t ready for that kind of life and I still don’t feel ready for it. I feel I’d like to see people, I’d like to know what was going on, I’d like to know what’s happening about politics and government, all sorts of things, whereas at my age I should be thinking about other things but no, I’m still that way inclined, that I’m very much interested in what’s going on in life” (Mrs E, TP2)
“And usually I have newspapers but I don’t know what’s happened to them. And I seem to have lost interest in reading…which is not like me I’m an avid reader, always have been………I just have no interest in anything at the moment. The days just come and they go and I don’t feel it’s getting any better” (Mrs E, TP2)
“As long as I’ve got the health and strength to enjoy my television enjoy my books and listen to debates that I can still understand and enjoy and as long as I see my family that’s me, I’m contented with that” (Mrs E, TP1)
“I think I’ve got this idea that if I was at home things mightn’t always be smooth and that but at least I’d be in my own home and I’d be in control of things, whereas now I just feel I’m an onlooker” (Mrs E, TP2)
Future fears become reality
“I didn’t think I’d live to this age to finish up like this” (Mrs H, TP2)“This is not a life, just an existence” (Mrs E, TP2)
“You say to yourself well is it worth it, all this nonsense?” (Mr I, TP2)“I want to go home. And I don’t want to be a nuisance, I just want to be there in the background, have my cup of tea and whatever it is that’s going and just let my life drift that way” (Mrs E, TP2)