Sub-Theme Two: “We Need the Bed”

In this sub-theme participants draw attention to the fact that their loved ones’ dementia related needs went unmet and to the emotional responses that this experience generated in them. See Brian’s extract below:

“Being told that there is nothing that they can do for your mum and they are sending your mum home not very nice….it made me feel that they didn’t give a shit…that’s like him saying we need the bed so we’re going to send your mum home and if she dies at home she dies at home that’s not our problem” (Brian 5:224-270).

For Brian, the HDP had given up on his mother when they told him “that there’s nothing” else they could do for her. However, in his mind this was not for lack of remedy but because they “needed the bed”. It seems that for Brian the hospital requirements were prioritised over his mother’s needs, conveying a sense of unfairness. Further, his phrase “we’re going to send your mum home…. not our problem” suggests that he felt the HDP attributed to him their own responsibility for his mother’s care. It is also possible that this additional responsibility made Brian anxious about his ability to manage increasing caregiving tasks at home. Moreover, when Brian says “they didn’t give a shit” it suggests that he was feeling insignificant and angry about the doctors’ indifferent attitude. Alternatively, it may be that Brian struggled to accept the doctors’ inability to cure his mother as this would have required him to face her mortality. Indeed, Brian’s phrase “if she dies at home” suggests that he was anxious about losing her.

A similar account has been relayed by Robert:

“I do get the feeling that they sort of say to you well we can’t do anything, there’s the toilet seat off you go and get on with it and that’s (laughs) sort of how I feel” (Robert 7:396-401).

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Robert’s use of the words “we can’t do anything” is similar to Brian’s phrase “being told that there is nothing…they can do” and suggests that like Brian he felt that the medical team had forsaken his mother. Robert’s reference to “off you go and get on with it” implies that he and his mother were being discarded since the hospital needed the bed and that the HDP were shifting responsibility for care back to Robert which also echoes Brian’s experience. Further, from both accounts emerges a sense of caregivers being cast aside by staff. Robert’s words “off you go” sound as though he was treated like a child which may have left him feeling belittled. Indeed, his laugh is indicative of the embarrassment he endured. Similarly, Robert’s reference to “get on with it” conveys the impression that he was being instructed to hurry up and leave the hospital. Perhaps Robert protested against his mother’s discharge, prompting staff to respond in an assertive manner. If so, this may well have left him feeling angry and powerless.

This sub-theme is elaborated by Richard’s description of the HDP poor understanding of his father’s dementia related needs:

“When you disrupt dementia patients it’s not very good, they need uniform they need consistency, and that is something that with dementia that should be learnt…...you can’t take them out of their environment and put them in another environment and then another environment within quick succession they get not aggressive but they get more and more confused and it’s very difficult” (Richard 4-5:183- 214).

Richard’s account suggests that the HDP were keen to transfer his father from hospital to a temporary care home, perhaps since they needed the bed. His reference to “disruption” and “it’s not very good” implies that he opposed their plans due to the negative implications for his father’s wellbeing, namely increased “confusion”. Equally, his phrase “it’s very difficult” implies that he also opposed this plan due to the potential impact of his father’s challenging needs on his own mental health. Furthermore, Richard seems to differentiate between dementia and other elderly patients when he says “they need…consistency”, perhaps to highlight individuals’ with dementia idiosyncratic requirements but also to emphasise that with regards to his father, these needs were overlooked. One wonders whether Richard also perceived IDC as a unique group with distinctive needs given that IDC need to negotiate needs such as consistency, uniformity, aggression & confusion in their care-recipients. His reference to “it’s very difficult” suggests that this may be the case. Richard goes on to say “that…should be learnt” which

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suggests that he is being critical of the HDP for their poor understanding of his father’s dementia related needs which may have left him feeling angry and stressed.

Like Richard, Jacquie was worried about discharge since it necessitated further disruption to her mother’s caregiving routine, which is telling of her need for prior preparation:

“Another novelty, another new atmosphere for her, new nurses, new place for her. I was very worried…because of her reaction, how is she going to be you know in a new environment” (Jacquie 5:173-185).

Whilst Jacquie’s use of the words “for her” highlights that she was “very worried” about her mother’s response to the changes in her caregiving environment following discharge from hospital to the rehab centre, one wonders whether she was also anxious about her own need to adjust to a new setting and the implications of the potential changes in her mother’s behaviour for her own wellbeing. Further, Jacquie’s worry and sense of ambiguity imply that her concerns were not addressed by staff and that the potential adverse implications for her mother’s dementia related needs were ignored, which echoes Richard’s account.