Theme 1: Reciprocating relationships

Ideas about getting older included the reality of who is taking care of whom, their respective roles and was the focus of this theme. The identified bonds motivated members to engage in reciprocating relationships which demonstrate the connectedness of participants with their family. Family was described by four participants in terms of the biological relationship, e.g. nephews were nominated as people who could be contacted if help was needed. Maddie (aged 40) believed that if she had a Dad, then she would have a family: her father was different to a Dad as ‘He doesn't deserve to be called Dad at the moment … [A good Dad is] someone who is there every day.’ For others, family was not dependent upon blood ties: Samantha (age 50) was one of two participants with intellectual disability who regarded her friend as family whom she trusts ‘more than family. She's my next-of-kin at the hospital … I said to Mum – you don't even know me…’ Therefore, what constituted family involved connections and experience which were informed by memories, or the qualities expected of members. Photo-elicitation demonstrated the importance of family as participants conceptualised their connection with others in relation to themselves. Jamie (aged 50), for example, brought a photograph of himself with seven of his siblings. He described those he is estranged from as ‘they don't come and see me … [but] that's all I have … they are important to me those two’.

The roles of those identified as family were described as dynamic. A number of factors influenced the uptake of instilled, acquired or evolving roles in the reciprocal nature of the relationship. Whilst some participants did not begrudge this reality, many were not cognisant of how it had occurred, yet there was a resignation that it was due to their own ageing or that of their family member: six participants expressed a lack of choice about their responsibilities and felt resigned or trapped in a designated role as they did not have a choice about staying at home and were doing so due to the health of a family member. Preston (aged 53) commented:

Being the eldest in the family demanded this role in the relationship for Trevor, aged 58:

Such care-giving roles were not negotiated and often hidden. Thirteen participants identified key tasks they undertook alongside their family with whom they lived. Trevor and Bobby (aged 55), for example, each noted that they now vacuum, hang out washing, do the lawns and were simply available. As his mother had recently lost her vision, another spoke of having to go in and out of the house to check on her when he waters the garden to check she is okay. Peter (aged 45) managed the firewood and would seek help for his parents if needed from neighbours or ‘if Mother wasn't feeling well, I would call an ambulance’. Since his father's death, Preston continued to live at home with his mother who relied on him for many things as her health was now failing. He reflected, ‘it's a 24-7 job you know day in day out’.

Not unexpectedly, companionship was therefore a natural outcome brought about by reciprocating relationships. Kate (aged 48) liked having her mother to talk to, Peter and Leslie (aged 48) acknowledged the company was important as one gets older as they now play games together. Living with family also enabled participants to get out into the community. For Michael, aged 47: ‘I like living with [aunt]. She takes me to school [adult education classes] … Takes me everywhere.’ It also facilitated ways in which time was spent by listening to music, watching television or, for Jeffery (aged 47), knitting together as his mother could not go out as much as in the past. Samuel (aged 47) was more pragmatic about the meaning of the arrangement, stating ‘it's cheap board I suppose!’

Reciprocating relationships were based on notions of what constitutes family, the responsibilities inherent therein or expected of its members (which is not without mutual benefit). These inform the perspectives that participants had of themselves and are evident in the following theme.

Theme 2: Emerging (in)dependence

Autonomy is a valued notion and, compared to what they had experienced to date, several participants believed they would achieve greater independence as they got older. Participants identified factors which helped or hindered autonomy. Twelve participants noted that maintaining independence as one ages is important. Trevor said, ‘Touch wood that'll never happen…’, in reference to not being able to drive, ride a bicycle or go out for meals. Mobility was associated with independence and the loss of mobility was described as signifying the need to move into a rest home. Independence for Leslie was described as being able to go ‘somewhere on me own all the time’ when she got older as she was unable to do that at the present time. For Maddie and Jamie, going out into the community denoted independence and Mitchell (aged 47) ‘sometimes [gets] a little bit frustrated’ when people could not understand what he is saying or do not ‘take time’ to listen which he hoped would change as he aged. Four participants felt that cooking their own food would signify greater independence as they got older and for six others, managing their own money would achieve this. For Bobby (whose sister had Power of Attorney), this was also described as disempowering – he said ‘I can't go to the bank and get my money out. She's got to go with me and sign for it … It's a bit harder because sometimes she doesn't turn up’. Being supported to access community facilities was described by several participants as an important example of increased independence as one ages.

In exercising autonomy, a third of participants described opportunities that fostered independence through learning and developing skills which, again, was anticipated as part of the ageing process. Sometimes, learning new skills was described as being a necessity or, for others, their own pleasure. For Samantha, the role of the support worker was pivotal as ‘she takes me swimming … we go to the pictures … to the beach. Trying to get into something I can do’. Leslie wanted to be able to use the telephone as it was hard for her to dial the numbers because she did not ‘know which ones to push … if the number's very big I can see’. For Bobby, the skills were practical household chores:

For five participants with intellectual disability the status quo (in terms of living arrangements) was seen as preferable and inevitable as things would ‘stay the same’ (Samuel). Hence, as the future was largely unknown there was security in what they knew. However, as noted above there were limitations in the autonomy experienced by some individuals which may foster greater dependence rather than independence as they age.

Theme 3: Configuring ageing

Initially, age was described as a number by the majority of participants. For Maddie, turning 40 ‘just seems old to me’ and Frank (aged 37) recognised the obvious in relation to himself: ‘I would say forties and fifties, but I'm almost up to there, see.’ Four others reflected that 60 years of age was old, and a further six participants reflected that being in one's eighties or nineties defined this. Carol (aged 46) was emphatic that ageing was a lifelong expectation as ‘we all get old – from when I'm born’. Photo-elicitation further enabled participants to generate ideas about ageing: Leslie and Jack (aged 51), for example, drew a picture and described changes in appearance as an inevitable part of getting older which were, respectively, linked to changes in the hair getting thinner and facial appearance: ‘That's me when I'm grown old … all the hair around there … It grows out’ (Leslie).

In conceptualising ageing, references were made to those considered to be old, such as a parent or grandparent. Although telling time was difficult, four participants described an inherent sense of how time was qualified and the implications this has as one gets older. Trevor reflected that a clock made him think about getting older as he would ‘like to have perhaps another day … but it's too jolly quick … I'd like to have a wand to slow it down but nobody can do that’. All but three of the 19 participants correlated getting older with changes in physical and cognitive function. Two female participants identified menopause as a milestone in the ageing process: Kate noted that ‘menopause that's one worry … a lot of people have sweats, and hot and flush face, flushed whatever you call it’. Bobby spoke of his neighbour who was 99 years of age who had a nurse aide and someone coming in to clean the house as indicative of ageing. Samantha initially stated that she did not know ‘what about getting older is’. However, when she brought her dog into the interview, ageing was likened to her pet as her dog is ‘older than humans, sleeps a lot … [and] used to run around like a mad idiot; now not so much’. In addition, the dog was no longer as sociable and she concluded that her dog was like her, ‘I am just getting older.’

Jacob brought a picture of a steam train (Figure 1) and likened getting older and changes in bodily function with a steam train: ‘our bones become brittle … frail and brain becomes weak … it's [the train] got parts that works by steam and wood to make the engine go and it's the same with our body parts working’. Mitchell chose a picture of himself on a horse as it not only reminded him of being younger, but that he was able to sit up by himself, something which has become increasingly limited with age. Changes in function were not only limited to body systems; several participants identified a cognitive element to ageing. Frank brought a butterfly to the meeting that he had made (Figure 2) and explained that ‘when you get older your mind starts to disappear on you’, thereby likening the temporality of the sight and flight of the butterfly to memory loss.

Figure 1.

Jacob's steam train.

Figure 2.

Frank's butterfly.

For some, getting older was equated with the eventual reality of death. Jacob, for example, was pragmatic in linking the picture of a steam train with the physiological process of dying in that ‘the upper body parts may shut down yes, before it's to sign off for death … That's how I know about getting old’. Cyril (aged 42) saw such deterioration as the beginning of the end ‘It's going to be really sad to be that old … To have a walking stick because they're dying or don't want to live’. Of note, four participants described feeling sad about the notion of dying, including two participants who thought that dying would also be scary and did not wish to be put in a closed coffin.

Theme 4: Entertaining possibilities

Ageing was not only equated with decline, it was also described in relation to entertaining future possibilities and reflected hope as to the prospects awaiting individuals: in entertaining the future, the hope of getting married was important for Carol, and finding someone to help him get a job was a priority for Cyril who wanted ‘to be a chef and artist’. At least four other participants also aspired to travel to places such as Paris and ‘go to see The Bill … Go to England’ (Stephen, aged 46). By virtue of having a job, Jeffery also maintained that ‘I work hard, earn my pay’ which allowed him to ‘save more on a holiday’. Three participants were in part-time paid employment whilst the majority (N = 13) attended a vocational setting. Regardless of their employment situation, others identified the concept of retirement as a stepping stone to the future and conceptualised this as an opportunity to go on holiday or sleep-in, for example. Peter saw ‘being unemployed [as an opportunity to] play bowls more days a week’ and having the opportunity to choose his own flatmates as things that would make living good for him.

Kate brought a photograph of her with her sister as the image represented a conversation in which she was told that when she gets a bit older she would ‘have to go and find a flat … It was quite a shock and I felt frightened’ and hoped that this was ‘a long way down the track yet’. Fifteen participants expressed a vision of alternative living arrangements, three of whom wanted to live alone or in a flat with at least one other person. How changes in circumstances may be actualised was described as dependent upon the availability of support, demonstrating an awareness of their own abilities, confidence or experience. For example, ‘if Mum and Dad were died, my sister and brother will come down and take me to one of the homes … hopefully they would help me’ (Leslie). Tony (aged 51) thought that when he got older he would ‘be living in a rest home’ just as his father had done. Part of enjoying life included a sense of freedom, as Bobby commented that ‘sometimes you feel like you just want to be by yourself when you get older’. Whilst this was desirable, Leslie and Preston thought that they would ‘still need help even after Mum passes on’.

Eight participants recognised the need for and/or identified their ability to manage their own health as important for entertaining future possibilities. Four participants identified their mental health history, how it manifests and impacts upon them: Maddie, for example, noted that her ‘depression's not that good … I wish I was dead … Taking my pills [helps]’. Being monitored was reassuring for two participants, as Cyril spoke of seeking out a nurse should he become unwell with ‘all the voices’. Five participants described keeping well through restricting sugar, going for walks or dancing to maintain fitness, not smoking and losing weight. Managing diabetes was important for Trevor as it has been difficult to get under control, ‘but it's good now … if I don't exercise doctor once said my diabetes will get worse by the time I reach 60 … So I exercise sometimes every day’.

Four participants found it hard to imagine what the future might hold: Trevor expressed the belief that ‘I think the future's here now’. The other three were satisfied with their current life and found it difficult to predict the future. Existing activities, such as going out in the van with the vocational service or spending time at the farm as ‘there's friendly people out there … I've got my best friends at the farm’ (Peter), were seen as of value currently. Critically, this exposed the idea of relationships as integral to enjoying life.

For 13 other participants, the human need to be recognised as an individual with skills, someone who seeks meaning and has a future to be entertained – was important. Entertaining possibilities was also linked to past identities: Bobby was the head painter in a service before he was made redundant. In reference to his photograph, he said ‘that was my life as a painter, as a toy painter … It was a good life … I did it for 28 years virtually … I liked the job – you know what I mean…’ (Figure 3). Whilst he did not feel he had any meaningful occupation currently, he identified the loss of a work identity with ageing and continued to entertain the possibility that he could still use those skills. Maddie sustained a head injury at age five when she was run over. The photograph she brought of herself in hospital ‘brings back memories about what happened to me’. She linked the accident to her experience of a cognitive disability and the associated limitations which ‘haven't been much fun’. In relation to getting older, therefore, Maddie entertained the hope that she would be able to continue to manage everyday tasks despite her disability.

Figure 3.

Bobby as a toy painter.

Aside from the anticipated death of a parent or significant other in the future, the majority of participants had ideas about what they hoped or expected the future to hold. However, participants were unable to explain how their aspirations might come to pass.