Justificantes de gasto y pago

Another transition that carers described, was the move towards the role of a 24-hour carer from that of spouse or partner, with its continual emotional as well as physical

responsibilities.

The lack of freedom to move around, make choices or take risks which are part of everyday life, was something that participants with PSP in particular, felt affected by. The added complication of this is that PSP can produce recklessness (because of frontal lobe

involvement). This can lead to a risk of falls, which carers repeatedly described as something they feared and tried to avoid wherever possible. This can lead to conflict between patients who feel constrained and frustrated (which may be compounded by their frontal lobe

problems) and carers who want to protect their relatives from injury. Falling was a prevalent and emotive subject which almost all of the carer-participants returned to. There was a combination of devastation when their partner fell and hurt themselves, and an undercurrent of feeling judged for providing inadequate care.

Because he has some horrendous falls…when he was at home before I went off for some respite he’d had- oh, he’d fallen and he was bruised. He looked like a car crash. He was always bumping into walls and stuff and falling back over and cracking his head. But I managed to keep him reasonably safe and intact as best I could

Sally, age 70, carer of partner with PSP

What happens if I am not here, if she falls over?”

Earl, age 70, carer of Helen who has PSP

I said, “Every fall to me, it kills me.” I shout at [Sarah], “There’s a reason for your falling, you [can’t lean on the] door handle.

if you don’t use your walker, you’ll have a fall. And falls vary: sometimes she stumbles, which is almost fine, but the bad falls… It’s bruises…it’s…

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There is a sense of the constant vigilance which is required; the 24-hour nature of care and the fear that any lapse in attention or period of absence could result in a fall which the carer feels responsible for. When the duties of a household are considered, if it is too difficult for the person receiving care to leave the house, how are everyday tasks achieved? Most of the participants interviewed had no or very little respite input, either from professional carers or informal care from family or friends. Essentials, such as shopping, become hard, and free- time for carers almost unthinkable as the guilt of being away from their partner and the worry of harm they could come to whilst away, overwhelms any enjoyment of a break. As Earl said, ‘What if I’m not here?”. Even if someone was standing in for him to provide support to his wife, if something happened whilst he was away, he would feel responsible for it. This lack of relief from the pressure of caring, obviously weighed heavy on the carers interviewed.

Especially poignant was Tom’s comment that each fall that his wife Sarah had ‘kills me’ and that he tries to stop the behaviours that lead to the falls. Sarah, who interviewed herself, felt a lot of frustration at being governed in this way, but has had numerous falls and often does not use her walking aids, reflecting the conflict between the couple and their prerogatives.

Carers describe being subsumed by the care they needed to provide, reflecting the transition from partner or spouse to care-giver. As the partner of the patient, the care required was not confined to the physical. Carers felt obliged to reassure, support and maintain the social lives of their partners, a demanding role. Carers also seemed to push their own health, social and psychological needs into the background, as they prioritised their partner.

There's a physical side of it, but I think, of the whole lot, the mental side is bigger than the physical. Erm, because I have went and said to the doctor, I need to go to the gym to put muscles on, so that I can lift my wife up. But I've had to go to the doctor's and say, “I need tablets, 'cause I cannot cope.” And that is the difference between physical and mental.

Bob, age 69, carer of Mary who has PSP

I think it’s just the, for me, the constant, the constant feeling of responsibility, and I feel that I’m very, very much needed, and in the supporting role… because I know how much he depends on me, and I think that’s just very tiring

it’s hard to keep enthusiastic and pretend, I feel I have to pretend… I’m all steeled-up, jolly… it’s, you put on, like a shield…but it’s not the real person, really

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In both the cases of Bob and Emma, they had made efforts to hide their difficulties from their partners. Bob had hidden from his partner that he was now taking antidepressants for

depression, which he felt arose from the strain of becoming a carer. Emma described putting on a shield to hide how she really felt, which gave an external impression of positivity. This shield was described as being ‘up’ both for the benefit of the public, including hospital staff, as well as Matthew, her partner, to disguise the weariness she felt. This suggests that the pressures carers feel to hide the impact of the caregiving role are from every angle; not only do they feel they need to provide consistent and multifaceted support to their relative, but also to protect them from the effect of the strain they experience, as a consequence.

This forced transition from relative or spouse to carer has implications for the carer’s identity and well-being. Some carers attempt to maintain some of their former selves by continuing to work or continuing with a hobby. In some cases, patients try to encourage their carer’s

continuing outside lives. In other cases, carers felt pulled back to the carer environment either by the needs of their partner or their own anxieties about them, such as Earl’s remark on falling above.

I’ve always been a grafter. She wants us to sell it. She wants us to get out. She wants [me to stop the club] and she wants me to sell my business. What am I going to do? Sit there? I cannot sit [7 days and 24 hours] I love her, but I can’t do that.

Bill, age 57, carer of Doris who has MSA

I feel as though I can still add value into what I do at work, and I get value from it, and that value helps me as a person, so maybe although it is quite tough going, I can come away with it, with a strength, that I might not have, if I was a carer 24/7, at this moment in time.

Pat, age 62, carer for Gary who has PSP

At the same time, I think in a way, now I wouldn’t say it to [Jackie] but I’ll say it to you, I’ve tried to get him to keep doing the things that he was doing before I was ill, but I don’t want to stop him having a life.

Rose, age 71, who has MSA

In the case of Bill, he seemed to be struggling with the conflicting drives to be there in a supporting role to Doris, who had withdrawn by a combination of self-consciousness over her

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condition and physical limitations, and stayed in the home the majority of the time. His perception of himself was as a ‘grafter’, a man whose work is tied up with who he is. He also had an active social life and a position in the organising committee of a recreational club. The pressure that he felt from Doris to sell his business, seemed to represent for him the loss of the life outside his role as carer. This tension between ‘his’ life outside and the carer life indoors, was clearly something he struggled with. He felt he could not reconcile between Doris’ needs and his own. Pat, meanwhile, although she seemed to foresee that the role of carer might become more prominent in her life as Gary’s disease progressed, appreciated her work-life enabling her to hold on to her individual identity. She also felt that despite the inevitable pressures of balancing a full-time job with caring, this division between these two roles was empowering; that she would not be as able to cope with caring and with Gary’s PSP, without her job, and the personal satisfaction it gave her. Finally, Rose described her efforts to maintain her husband’s interests outside of the home and care for herself. Rose used the phrase ‘I wouldn’t say it to [him]’ which out of the context of the interview seems strange, but within the context, she wanted to keep his interests outside of the home alive because she could foresee a time beyond her own death, when friends and an active social circle could help Jackie continue. This marks the ultimate transition from the carer’s point of view, from relative to carer and then to widow/er. Sudden loss of a feeling of purpose and difficulties in re-constructing a life after being a carer, has been described in PD; continued interests and links outside the caring-life may act to buffer against a complicated grief reaction (Hasson et

al., 2010).