New Carer needing advice

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

Morning Steve

A stroke is devastating.
It doesn’t just happen to your wife, it also happens to you as well.

You are not alone, you are here now and there is also the Stroke Association that will be helpful for you.

Find out if there is a stroke club you can get to for yourself and go there, meet the organiser and chat with them it will be very helpful and informative.

If you don’t have one local to you, find the nearest one and make phone contact with them.

The Stroke Association will be a help for you as well as here.


My mum has had several TIA strokes in her 70’s and 80’s

The speech issues are frustrating and hard to cope with at first or on a tired day for them.

It must be totally perplexing that she didn’t want rehab or continued therapy.
There could be all manner of reasons, independence, pride, upset, determination to do it herself and a myriad of other reasons.

That must be hard to take that she holds it against you for her going into rehab, hang in there, you know you did it for her best interests, you did the right thing and if she doesn’t agree with that then that’s her own juices to stew in. She might have been afraid of them deciding to put her in a home and you being pressed to be complicit in that.

Mother and I laugh when her words get garbled or she says the exact opposite of what she should be saying. But after the first one it was very much hard work and keeping her spirits up, letting her have a few goes and then helping her out if she signalled for us to do so.

Please get in contact with a stroke group leader and if you can, get to a group and join the forum in the stroke association, all will be very helpful and informative.

Hugs. Welcome to the forums.

My Dad had a major stroke over 40 years ago, and one of the things that we had with him was the aphasia and “odd” words that got stuck in his mind. The worst one was when he was looking for his shaver. Which was on it’s charging stand. “Not that, my shaver.” He even mimed the action of shaving. We were at it for at least half an hour, trying to work out what he was on about.

Turns out he meant his electric toothbrush.

Strokes cause massive brain injuries, and there’s so little understood about the brain, there’s likely very little anyone can tell you. But strokes do sometimes affect personalities and that does impact relationships. It’s also possible that short term memory is adversely affected and that - along with feeling betrayed and rejected because “you didn’t want” her home. For the right reasons, but she can’t see that: strokes seem to make people a little egocentric, perhaps because of the sudden loss of ability and independence. And I think that last bit is the problem. She’s feeling out of control and taking that loss out on you, because you’re there all the time and because you are naturally in a position where some of her control has passed to you.

It’s a new dynamic, but please remember: it’s extremely early days. It’s only just under 3 months since her stroke, and while she’s making progress, the chances are she will make even more over the next year or so. But it’s not happening quickly enough for her, and she’s feeling locked in. It takes time to adjust and it’s hard to be patient.

Are there any activities you enjoyed together before the stroke that you might be able to reintroduce gradually? Something to help the process of returning to “normal” life?

Everything that Charles said!

It is a short sharp shock into a life nobody wants/signed up for.
There will be a lot of emotions inside about it.

Hard work
make things fun if possible

Thanks to all of you who replied. I’m still trying to figure out the forum layout. How do I reply to an individual comment, please?

Hi Steve,

Just answer on the thread and say the person’s name
eg Breezey - …

Charles …


You can also PM people by clicking on the speech bubble in red and white in the left hand column underneath their name and Joined information.

However, answering on the thread does enable more people then to respond to your comments. Its a bit like a group discussion


Melly-thanks, I think I’ve got it now, and thanks to Charles, Breezey et al!

I’ve been using the phone. Different format–all’s very clear on the PC!

You’re welcome, Steve - hope it helps.

I never look at the forum on the phone nowadays. Can’t get on with it, Much better (and easier) on the laptop. Not to mention small print issues… :unamused:

Today’s (Well, this week’s) Dilemma

I’m having a serious problem getting Elaine to eat. Breakfast is fine: Strawberries with yogurt and Bran plus a nice cup of coffee–she’s been having it for years and still enjoying it today.

Dinner is a different story. I’m no chef, but I can put together a reasonable ready meal (Charlie Binghams, etc). We thrived on these kinds of meals during lockdown but now she won’t entertain them and she cannot tell me what she wants. I have something in the order of £100 worth of various meals that I’ve bought based on what I think she’s told me she’d like–all rejected when presented. The latest iteration of this was going through Waitrose’s options on their website together. She selected some mains–cooked Ribs, lamb shanks, pork shoulder, etc and I charged off to buy them. When dinner time came around, I displayed all and she selected pork ribs, but when I asked what she’d like on the side she said “It’s not complete?”. No, I said–I’ll do some sides to go with it. Her response? “I don’t want that–I want everything together!”

I mentioned her favourite word in my initial post. It’s ‘airways’ and has referred to literally dozens of objects from her perching stool, to her dressing gown, to her underwear drawer and last night, to her feet. In essence 'airways can be just about anything. After rejecting the ribs, she told me I could go to the ‘airways’ and find what she wanted to eat. I took this to mean the supermarket and tried to explain that there are thousands of options and somehow she needs to tell me what she wants. This she cannot do and she is highly irate (think Raging Bull) that I cannot decipher ‘airways’. We ‘debated’ this dilemma for a good couple hours last night and ended up with no dinner.

I’m fast running out of ideas. Has anyone experienced similar issues (and more importantly, solved them?)

Apologies in advance if some of the following sounds a bit sexist.

Did your wife cook her own meals before she was ill?
Was she happy in the kitchen?
Would it be better if you just cooked something and presented it to her?
My 10 year old grandson was a very picky eater until he started helping me cook, and now he eats everything he cooks. Lasagne, cottage pie etc.
Is swallowing an issue?
Has an occupational therapist helped your wife find what she can still do in the kitchen?
Do you need help with simple recipes you could do yourself?
Do you have a dishwasher and a Magimix or similar food processor?

Some time ago we used to have lots of recipes on the forum.
Not sure if they were “lost” when the forum was upgraded?

HI Steve,
the aphasia sounds very frustrating for both of you.

Has your wife had any speech therapy input recently? They can recommend/sometimes provide resources (books/folders/apps that can aid communication.) There are also some resources online.

Can she process/understand photos or line drawings or the written word? If she can understand one of these forms, can she select the actual elements of the meals herself? Or could you take pics of meals that you have prepared on the plate eg the fish pie, with the broccoli and the carrots etc

The meals that you looked at online together - did they just show the ribs for example or did they show it with serving suggestions? If they showed it with serving suggestions then that may well be how she thought the meal would be prepared by you.

However, her comment I want everything together - might mean that she finds combined foods easier to eat/ feed herself.

It may be though the it’s too much choice making and as BB says just present the meal with sides you have chosen.

What sort of food did you eat before the Lockdowns?


My mother has had several TIA mini strokes.
In hospital at first I would be spoon feeding her soup, yoghurt and custard type things as swallowing was difficult for her and she had no appetite.
When her swallowing improved and she was back onto food, I cut up her food and spoon fed her, but she was soon full, couldn’t eat any more, but surprisingly had room for the dessert afterwards! Naughty - saving her appetite for dessert.
If dinner was unappetising or disappointing she would push it aside and go straight to dessert.

I don’t know if it was the stroke at play or she was taking advantage of the situation to be naughty and have desserts because at home she doesn’t get them due to diabetes!

There is the frustration that speech is difficult the words are hard to find sometimes or they have the right word in their head but the wrong ones come out or the opposite to what they mean comes out.
Not always in control of everything. Frustrating.

Perhaps don’t show the box, just say lamb shank or fish pie or roast salmon etc and veg or ask if she wants peas and carrots with xyz or beans and carrots etc.
Or before showing the box say ignore the sides on the box because we haven’t got them, we’ve got xyz instead.

Noticing little things that are major and working with them
On the box, were the sides finger foods? did you give her knife and fork sides?
How is she with a knife and fork? cutting and feeding herself?
Is finger food easier to manage and feed herself?

There are plates that have a lip at one end to push food against it to help get it onto the fork, things like this can be advised to you by the stroke clinic and/or stroke club leader.

There are personality and frustration issues for sure and your wife might not have accepted the situation, fighting and angry about it, which doesn’t help either of you.

For quiet a while after a TIA my mother had a stuck needle on “Yes please!”
I teased her mercilessly, offering her things she hates - cup of tea? aubergines? Yes Please! :laughing:

At such times I took time out to consider the issues observed and formulate questions that would help her or devise ways of doing things.
Do you usually know what you mean to say? Yes.
Do the words come to you - mostly, always, never? Mostly
When the words don’t come is it because you can’t find them? Yes
Do you try to find alternatives? Yes
So when you speak do those words always come out? No
Do you have times when you know the word but you can’t say it? Yes
Is it frustrating? Yes
Is it tiring? Yes
Do you want me to help when that happens after a couple of attempts? Yes
Don’t follow me I’m lost too - I can’t always understand you, I find myself lost to know what you mean, you will need to help me help you! Be patient with my attempts to decipher and find out from you.

Building an understanding and trust and faith in your care for her.