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New Carer needing advice
avatarSteve_2208 OnlineMember
Member26 Aug 2022 06:13
Good morning
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

2 Likes

@skladd welcome to our forum and sorry to hear about your wife’s stroke.

It’s really tricky as Elaine sounds like she was very independent and fully in control and she’s still trying to be.

I know you won’t like this as you probably already do this but… patience and reassurance is the only thing I can think of for you.

My experience was not like your wife’s but maybe someone on our forum could help.

You can shout, scream and let it all out here as we all listen and do it ourselves sometimes. My bestest regards and I hope you have some luck with Elaine. Small steps each day to improve is how I dealt with my stroke. Loraine

1 Like

skladd–Sounds like your wife feels “everyone” thinks she’s no longer capable of running her own life–a very independent type of person. Is there a way to include her in the decision-making while guiding her in the right direction? For example, something like: You need more rehab. How would you like to accomplish that? Since, having trouble communicating with words, ask her if she would like to try using pictures—make drawings of ideas or cut out pictures from a magazine to indicate certain situations. Say the word “airways” and present her with a variety of pictures. Also, keep in mind that a stroke causes one to often exerience intense emotions, more than they would have before. I know I cried at the drop of a hat, and when I started laughing it was hard to stop. This lessened over time as the brain healed, it but did affect my behavior for awhile. Just some thoughts. My prayers are with you both. :slightly_smiling_face: :heart:Jeanne

3 Likes

Many thanks, Loraine and Jeanne
You’ve summed it up very well. She’s extremely independent. I’m trying to involve her in any planning being done-hopefully she’ll engage. She’s great with the therapists, but we’re having to think tactically to get them in the door!

Thanks again

Steve

1 Like

Hi @skladd welcome to the forum, though sorry about your wife’s stroke and the position you find yourself in now, it’s difficult for you both.

It’s early in her recovery and you say she’s making progress, which is good news, with continued OT and SAlT support, her rehabilitation will hopefully continue.

One’s emotions and behaviour can be up and down following a stroke, stay strong, be kind to yourself too, you are doing the best you can.

Best wishes to you both, big hugs :hugs::hugs:

1 Like

Thank you, Mahoney !

Skylad it’s still early days in your wife’s recovery and I’m sure things will settle down and improve ,it’s learning a strategy so you both get through this difficult time.when my own mother had serious stroke and was in rehab.she could have periods of cooperation and then mood swings when she became suspicious of our motives and say outrageous things. On one occasion a male friend of hers listened for a while and then shocked us all by saying “ Now you know
that’s nonsense Margaret so we’ll have no more of it !”I sat in disbelief at his blunt approach but it had desired effect on my mother. It seemed to be a phase she was going through while her brain started to rewire. Have you got someone your wife respects who would be be prepared to sit in and more gently correct her ? Our thoughts are with you and keep us posted and look after yourself.My stroke group has a carers session once a month have you got a group near you?

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@skladd welcome to the forum although sorry your wife has had a stroke & all the difficulties this has brought you. She is clearly very independent but that doesn’t mean she knows what’s best for her right now. I echo what others have said about asking her how she wants to achieve progress etc. Also, someone (not you) being quite blunt with her might work I’d it’s approached in right way. I hope things improve soon for you. Best wishes x

1 Like

Thanks very much Pds

Yes, my wife has a very close friend who has been trying to quell her suspicions–not much luck so far but there are signs she may be taking bits of it onboard. We’ll stick with it!

Steve