PERÍODO PROBATORIO

Health and social care workers featured prominently in many narratives of the early months of rehabilitation as participants struggled to regain communication and direction. Participants often praised these workers for their privileged knowledge and special powers, enabling them to act as guides and mentors, facilitating and helpfully charting a course through the unmarked territory of stroke and aphasia.

Feeling ‘at sea’, a number of respondents regarded the guiding hand of confident, well-informed therapists highly. Binda, for example, recalled his Speech and Language Therapist as a connector and conduit between the before and after aphasia worlds:

She was absolutely excellent. She was well grounded. And erm (..) took me (..) step by step (...) her (…) it was as if she was a (…) conduit (…) to )...) the outside world. And erm (...) it was (…) almost as if I spoke a different language and erm she could (…) understand and (…) bring on the rest of the world.

Chapter 6: Contextualising the Findings

147

Others enjoyed the focus on rehabilitation activities. For example, Cherry viewed work on verbs as important to recovering speech and communication. Frank worked as a hospital porter prior to onset of aphasia through a heart condition in his mid-fifties. He reported valuing aspects of the therapeutic relationship as well as the practical support to access the a community of people with aphasia:

Frank: I’ve got all the time in the world for speech therapists, yeah. Yeah.

CP: So what is it about them that (…)?

Frank: See I’ve not been going for physio because I had all my faculties so you know. But yeah, problems with (…)

CP: What was helpful from the, that you got from the speech therapy then?

Frank: Erm, well, you know, time, understanding. And also she, she said to me, erm, we could refer you to a stroke group, she said try it, she said but I know you won’t enjoy it because they’re too old, you know, they’re old people. So she said I’ll write you a reference to come to Connect and I never look back.

(Frank, line 1459)

Many participants were vocal however in their criticism of absent long-term support and inadequate practical help beyond the ‘basics’ of walking, talking and dressing. Terry, a former salesman, had experienced a stroke 13 years previously in his mid-thirties. He recalled how his therapist had quietly kept him on the books, below the ‘radar’ of her manager, so that she could keep him on for an unusually extended period of therapy. Others contrasted the abandonment by statutory healthcare services to the warmth and welcome of third sector support agencies that offered reassuring support and friendship in the longer term.

Whether respondents evaluated the health and social care support they had encountered positively or less favourably, very few participants recalled any

Chapter 6: Contextualising the Findings

148

involvement or prioritization of friends in rehabilitation. Many individuals also reported a perceived lack of support for family members.

CP: I mean, out of interest, did the hospital give any support or advice to Judith [wife]

John: Pff. No, no, no.

CP: Give any support or advice to your friends? John: Erm, no. No. [laughs]

(John, line 2531)

CP: And out of interest did any therapist or the rehabilitation people, did they offer any information or advice to your husband or your friends?

Joan: No. Absolutely nothing. (Joan, line 1678)

Chris’s wife, Tina, reported a similar experience. She recalled with some frustration the absence of longer-term support for her partner and herself:

‘I’ve struggled for everything and I’ve fought for everything. And I’ve just been exhausted. We probably did need more support than what we were getting but it’s only because I’ve been through it now and I found out afterwards, I’m not negative because I can’t spend anymore, I haven’t got, I’ve only got so many resources so what’s the point wasting it on the negativity, you’ve got to turn it to what’s happening today, forget what’s happened yesterday. But there needs an awful lot of more support out there.’

(Chris’s partner, Tina, line 2955)

A number of participants described experiencing a more intense presence of family members during their rehabilitation. This tightening of family relationships, the emphasis on important new relationships forged with rehabilitation staff, and the absence of work routines and regular friendship activities could all add up to the perception of different priorities in a different world. Many participants suggested that family and rehabilitation priorities, particularly early on, could unintentionally exclude friends. Priya, a recently

Chapter 6: Contextualising the Findings

149

graduated optometrist when she experienced her stroke, was someone who reported retaining most of her many friendships. She reported however that friendships were not her top priority during the acute phase of her rehabilitation:

‘So I had so much to do, erm, like my, erm, SLT therapy and my, erm, OT and like my physio and I had to do, erm, I [clears throat] (…) Erm, erm, I had so many family things as well like, erm, I had too much to do to think about her (close friend) in effect.’

(Priya, line 1509)

Anthea, was working as a nurse when she had a stroke in her mid-forties. She recalled a strong presence of friends during the acute phase of her illness though it was family who became more present as the work of rehabilitation continued:

‘Because what, when at first erm, I was in erm, the hospital

most of my friends were there. But when I went into erm, what do you call it … the rehabilitation that most times it was my family who was there.’

(Anthea, line 810)

It was only on returning home that her long-term partner left her, because, as she described it, he was unable to cope with her physical and communication disabilities. Shortly after she moved into a residential home where she still lives 11 years later.