El futuro de la inmigración en España. El papel de las políticas migratorias

Other stressors outside the caregiver-stroke survivor system and the outer network of family, friends and formal support were also found to contribute to caregiver outcomes and burden. These included employment changes and financial strain that occurred as a result of the demanding caregiving role and the increased costs associated with stroke care (e.g. medications, rehabilitation, respite, transport, and adjustments to the home).

3.2.4.1 Employment and financial strain

Although half of the caregivers in this study had already retired at the time of the stroke, the remaining half were still engaged in paid work at that time. For these caregivers, changes to employment status as a result of the stroke situation were evident. These changes included: reduction in hours and work load, modified job roles, job relocation, or even termination of employment/early retirement. At times, a reduction of work hours was required in order to obtain the Centrelink Carers‟ Allowance. Termination of employment or the prospects of termination appeared to have a large impact on some caregivers. Further, financial pressure and strain was found to exist for a number of caregivers regardless of their employment status and level of income.

“I‟m not working and I‟m on a carer‟s pension. A major, major change. That‟s probably also another major. It comes I think probably on equal footing with the social, if not a little bit above…It‟s not like I‟m

walking around in rags or anything and I still can afford to buy things from time to time but it‟s not quite the same freedom that you have when you‟re getting a fortnightly pay packet”. (C13: Child)

“...I think she thought that I would just stop work and I think my kids did too, and then I just thought, I can‟t do that. If I give up my job, then I‟ve got really nothing, and luckily 2½ years later I‟ve managed to juggle

the two. As I say, I‟m 60, I don‟t really (need to work), I just feel I want to, I just get a lot out of my job”.

(C23: Spouse)

“ (We) rent this place, since he had the stroke we have more expenses... Before I used to work six or seven hours but now I have to work only five hours because of the carer allowance”. (C32: Spouse)

“Umm..we had to go and buy another car cause‟ Patrick had trouble getting in and out of the one we had, and ah that‟s a big thing, um we bought one that‟s suitable but at the same time we need to adjust the seat to go back a bit further cause‟ his legs were a bit cramped, but that was a big thing buying a new car,

not new, second hand of course”. (C1: Spouse).

Reported financial strain, however, was more prevalent for those caregivers who were not in paid employment prior to the stroke, experienced a reduction in employment hours or termination to undertake the caregiver role or receive the Carers‟ Allowance, or in the case where the stroke survivor had provided the main source of income. Caregivers who were retired or living off the income provided by the Aged Pension stated that they struggled to pay for all the stroke care costs in addition to the usual costs of living.

better shoes and take her somewhere, now with all these things gone, we have to live with the pension, can you imagine $2-300 a week?”. (C9: Spouse)

“...and also the cost factor, like if I put Tim into XXX, I can‟t remember how much the pension is, but if I put Tim into XXX that‟s 200 and something dollars for the week, which in all fairness is not a lot of money but it‟s because you‟ve got that there and you‟re trying to keep this here and I‟m trying to go on a holiday too,

do you know what I mean?”. (C7: Sibling)

It was acknowledged by those caregivers who were still employed at the time of the interview and on high incomes or those who were able to afford private health care, that they appreciated their relative financial security which allowed them the freedom to choose and access adequate formal support services and resources, rather than rely solely on government services or to manage the caregiver role without any formal support.

“I think that was the saving grace for us is that we had money; without money, I don‟t know what we would have done, to tell you the truth. Because we looked at some nursing homes and we just sort of, “There‟s

no way” and there‟s no services in them, these poor old people crammed in, it‟s like a kennel, just so awful”. (C28: Child)

“Well, Yasmeen, it‟s something you could consider is the fact that we‟ve got private health cover and if

Erik hadn‟t had that, he couldn‟t, well, we would have had to pay at XXX Rehab. The alternative was to send him to YYY Rehab, which is public, and probably not as good. That‟s what they told us at the

hospital. Therefore, going to the XXX, they put us on the right track, particularly the occupational therapist; she said, “You‟re going to need help when Erik comes home, so we‟re going to arrange that for

you” and then automatically after those three months of transitional care, then we went onto the aged