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New Carer needing advice
Member26 Aug 2022 06:13
My wife (73) suffered a serious stroke on 31st May including craniectomy and subsequent
cranioplasty. She was, at first, paralysed on her right side but has progressed rapidly in this respect.
She now has good right side mobility but decreased sensation which inhibits her activity to some
extent. Physically, she’s recovering well, but her aphasia and related functions need much work. My
problems as a carer result from an attitudinal issue which I cannot deal with (so far).
When in hospital, she made great progress, enthusiastic and cheerful but when she neared
discharge and rehab discussions commenced, she decided she didn’t need further help and wanted
to come home. Despite encouragement from me, therapists, and other professionals, she dug in her
heels and refused to consider it. The decision was made (by the professionals) that she did not have
capacity to take this decision and I supported that position—and that, as they say, is where my
troubles began. She was transferred to a modern rehab facility, private room—and she hated it. She
has now decided I am the great Satan for not supporting her wishes to come home and, in her mind
believes I acted unilaterally in sending her to rehab. Despite her unhappiness, she participated fully
in therapy sessions and continued to make substantial progress (which she will not admit). She was
friendly and cheerful during these sessions, but when alone with me (8-10 hours a day) made it very
clear she holds me responsible. I’m not crying ‘poor me’ here. I can deal with this except for the
impact it has on her current situation. Read on.
She became so unhappy at rehab that OTs and others reassessed her situation and concluded she
was safe to go home if I thought I could cope. I agreed and brought her home last Monday.
Physically we’re having no problems but the underlying issue—her lack of trust and suspicion
towards me—is making it difficult to help her. The Bristol Trust Early Discharge Team has been great,
but again, my wife is digging in her heels and insists she needs no help and is resistant to visits.
Ironically, one of the OTs came to see her (under protest) and, as always, Elaine was welcoming,
cheerful and the two of them had a lovely and productive chat and I stayed out of the way. Before
she left, the OT asked if it would be alright if a support worker visited the following day. Elaine
agreed, but when I mentioned the impending visit, she declared she had never agreed to it, it wasn’t
what she wanted and she wasn’t having it—she also accused me of organising it behind her back and
doing everything for me and not her. Reluctantly I cancelled the visit-there’s an OT visit scheduled
for next Tuesday, but I haven’t mentioned it and will discuss with the OT. I firmly believe that Elaine
will enjoy and even look forward to regular visits but she needs reassurance that she is in control—I
thought we were on the way when she agreed to the support worker visit, but then denied ever
having OKed it.
The aphasia is a source of constant stress between us. Elaine knows exactly what she wants to say
and realises she has a problem conveying the message, but somehow when I fail to comprehend her
wishes her frustrations bubble over and we end up either with tears or angry words primarily aimed
at my ‘treachery.’ She can be almost completely understandable, but then will add one of her own
keywords at a crucial point in the conversation—her latest favourite is ‘Airways’ and this can mean
any one of a dozen things and my failure to decipher it drives her up the wall. I despair.
I suspect some of you will have experienced similar issues—there’s much more detail I could add,
but for this first post, I really wanted to highlight Elaine’s distrust of me (after nearly 50 years) and
the impact this is having on her recovery. Thanks for any thoughts you might have