Sub-Theme Three: “I Had Nothing I Had No Life”

Most participants discussed the negative implications of partaking in the HDPP for their everyday life. See Jacquie’s extract below:

“I had nothing I had no life, my life was to come here, by 8:30 I was in hospital, all my friends I wanted to see ahh they came to the hospital to see me basically, and amm clients I cancelled a lot of them in advance or on the day because I just couldn’t….I am quite an athletic person and I did sculling once a week, I did spinning and went to the gym, golf at least once a week you know” (Jacquie 12-13:486-507).

Jacquie aptly encapsulates the negative impact of the discharge planning process on her every-day life when she says “I had nothing”, conveying a sense of bitterness and loss of the activities that she valued. Indeed, when Jacquie says “I....went to the gym” she employs the past tense to highlight that she was unable to participate in these recreational activities. This suggests that she felt deprived of her own needs which may have dampened her mood and left her feeling frustrated. Equally, these activities seemed to

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have contributed to the construction of her “athletic” identity and by losing them one wonders whether she also lost facets of her sense of self. Jacquie goes on to say “by 8:30 I was in hospital” which suggests that she was feeling anxious given the time of her visits. Perhaps she was worried about the quality of care that her mother received in hospital, since she no longer commanded her caregiving environment. If so, it may be that she was trying to attain control over her mother’s new caregiving situation by being present and keeping a watchful eye. This may further explain Jacquie’s experience of “no life”. Furthermore, the discharge process may have diminished from Jacquie’s sense of control over her own life by disrupting her daily routine and compelling her to adapt to the hospital regime. However, Jacquie’s account also portrays an image of a committed daughter, suggesting that her own internal need to support her mother propelled her to put her life on hold.

A similar experience is expressed by Robert:

“I didn’t have the time to A) to go to work and B) to have relationships or C) to have hobbies that was none existent to a large degree. I mean I still tried to do a little bit of everything but it was only a small amount which then created more pressure because your trying to do everything in a small amount of time”(Robert 12-13:713-723).

Robert’s reference to “I didn’t have the time…none existent” suggests that he was angry about giving up his needs and valued activities to partake in this process. Further, the lack of time to “work” and engage in “relationships” may have also generated financial and emotional strain and giving up his “hobbies” may have left him feeling isolated. Indeed, he goes on to say that he “tried to do a little bit of everything” indicating that he attempted to improve his wellbeing. However, this only “created more pressure” for him since he tried “to do everything in a small amount of time”, depicting a self-perpetuating cycle of distress.

Like Jacquie and Robert, Brian conveys a sense of loss though for him it appears to be linked to anticipatory grief:

“At home it was like…she……passed away, it was an empty…part of my life when she wasn’t here, even though I was seeing her in hospital seeing her every day, it was a different atmosphere….and that’s what it was like every day. Going up there and looking at people in hospital and then knowing your mum is one of them people and then coming

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home realising as if that person ain’t alive anymore, there’s no smell of her, there no noise of her amm its horrible and that’s…what it felt to me when I left the hospital” (Brian 8:425-447).

For Brian everyday life in the milieu of the hospital discharge planning process was a “horrible” experience. However, his words “at home…passed away” suggests that his devastating feelings of grief and loneliness were restricted to the context of his dwelling whilst in hospital he felt differently. Possibly because “there’s no smell of her” and “no noise of her” at home and therefore he missed his mother. Equally, the images of patients coupled with the realisation that his mother “is one of them” may have triggered anxiety in him about her mortality, which most likely increased when he went back home where the “atmosphere” was “different” since he was away from his mother.

Debbie goes onto discuss the undesirable consequences of partaking in the HDPP for her interpersonal relationships:

“I have got a partner…. I was juggling that, I was juggling him [ex-husband] I didn’t want him [partner] to see my ex- husband taking up too much of my time…. and of course my son was living at home which was very stressful because his wife died...so I was trying to care for him and my [ex- husband] so it was a bit of a juggling amm a psychological juggling match trying to keep everybody happy so I did suffer” (Debbie 9:490-516).

Debbie’s account suggests that caregiving had consumed much of her time, triggering worries about her partner finding out. Perhaps she felt that this would put their relationship at risk. Her use of the word “juggling” to describe her attempts to simultaneously sustain both relationships implies that she was feeling exhausted and frustrated about the negative impact this had on her wellbeing. Debbie goes on to describe a “very stressful” situation at home, and of interest would be to consider whether caregiving for her ex-husband left little resources for supporting her son. Indeed, her reference to a “psychological juggling match” suggests that her son and ex-husband were both competing for her support, draining her mentally and emotionally. Further, prioritising others needs at the expense of her own needs seemed to deplete her resource pool.

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