Efectos económicos de la inmigración sobre los nativos españoles

A broad range of emotional difficulties occurred in association with being a caregiver of someone with stroke, or which were exacerbated by the stress of the caregiver role. Caregivers experienced feelings of shock, sadness, guilt, anger, irritability, resentment, frustration and anxiety. Shock was reported to occur in the early stages of the stroke as caregivers faced the stroke without any preparation.

“It was a shock yes, because she‟s the driver, I don‟t drive...”. (C29: Spouse)

Loss of independence and spontaneity, lifestyle (which included enjoyable and social activities) and disruption of and inability to make future plans (such as overseas trips), were associated with feelings of disappointment and at times possibly resentment towards the stroke survivor or the situation in general.

“That‟s probably the main issue for me, and as I said it‟s this constant treadmill of appointments that doesn‟t allow me to have something where I can go and say well Wednesday afternoon is supposed to be my own time but last week he didn‟t go to bowls because he didn‟t feel like it, the week before he didn‟t go

because he was sick with the flu, today he rings me up as soon as I get out to do something to tell me he‟s coming home. So you can‟t really say the afternoon is yours, you‟re sitting there waiting for a phone

call all the time. So it isn‟t easy...”. (C22: Spouse)

Caregivers also experienced a feeling of loss of the person they once had in terms of both personality/behaviour and physical health. That is, adjustment to the change in a loved one without any certainty whether they would return to pre-stroke functioning brought sadness and hopelessness to some caregivers.

“When I used to go out to visit him and he‟d be sitting out the front in his wheel chair…ahhh…heart wrenching honestly…and he‟d been sitting there just about all day waiting for me to come (starts crying)..It‟s just not fair…why did it happen to him, this is what I get angry about, you know it shouldn‟t

have happened to him...should have happened to some bastard”. (C1: Spouse)

“... I don‟t think the tears ever go away, as – God; I think what it is, is the loss of the person that you had. There‟s this person who looks like my mother but it‟s not the person that – like I can remember my mother

used to stand in that corner, because every morning she‟d get up to make me coffee on the way out to work, et cetera. She‟d stand in the corner and she‟d take so bloody long to make the coffee. I‟d say, “Ma,

make the coffee, I‟ve got to go”. I would do anything to get her back (tearful). No, it‟s all right. It just never goes away. No, no, it‟s all right, this is the hard part”. (C28: Child)

In addition, caregivers were also dealing with other stressors such as the loss of other family members and friends, and grief and loss became more prevalent, the older and more infirm people became around them.

“A friend I had we used to work in Thailand, he died just recently he was 90... We used to ring one another a couple of times a week. Now there‟s no one”. (C29: Spouse)

As previously discussed, the caregiver-stroke survivor relationship, and relationships with the caregivers‟ wider network such as those with other family members or health professionals were sometimes strained, and fraught with disagreements or a lack of support and understanding for the caregiver. Consequently, anger, irritability and frustration developed. Also related to the caregiver-stroke survivor dyad were feelings of guilt and anxiety on behalf of the caregiver if they left the stroke survivor home alone and engaged in their own leisure and recreational activities. The guilt was centered around the belief that the stroke survivor was no longer independent enough to engage in many previous social and personally enjoyable activities while the caregiver still could.

“Points of conflict that really do create a lot, but I‟d like the, and I feel that, I have to say that every time I go out and leave him, and I do occasionally go out and leave him by the, when I say go out and leave him

I mean to go and have some fun myself – very rarely but occasionally – I feel very guilty about it because I‟m leaving him at home, he can‟t go anywhere but stay at home”. (C22: Spouse).

Caregiver anxiety stemmed from fears that something detrimental may happen to the stroke survivor when left alone. Caregivers also demonstrated other anxious concerns fuelled by uncertainty around the stroke survivor‟s health (e.g. worries about a recurrent stroke, falls and overall future prognosis), the duration of caregiving and the caregiver‟s own health and who would care for the stroke survivor if they became unwell.

“But I think the worst part for me after it happened was, after the shock sort of settled was just living with

the fear that it was going to happen again”. (C33: Spouse)

“So you‟re tied to something, and too tired because you‟re mentally, “oh what happens if I go and something is wrong, what can I do, I have to come back”? And maybe this happened because I‟m not

here and maybe he‟s more stressed because I‟ve left…. So I have to stop, for my sake and for his, because what happens when I get sick, who is going to look after us?”. (C11: Spouse)