Fluent Aphasia - Stroke - Early Stages

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1

Hi all, my dad took a stroke 4-5 weeks ago and luckily his movement improved really quickly allowing him to be released from the hospital… that and keeping him in the hospital was counterproductive as he was getting depressed staying put in a room, and getting angry with doctors and nurses.

He got out on Monday last week and for the first 2-3 days he was great. He has fluent aphasia so it is very difficult understanding him right now, his short-term memory is bad and he has lost sight in his right eye and most of his left. At first, he was pretty patient with us - more relief not being in hospital - but the more frustrated he gets he’s starting to shut off a bit already. His mood is changing from happy to angry to happy to fed up… and so on throughout the day. Today he woke up in a terrible mood and has spent the day in bed, not eating… tho he just took toast there.

His memory is quite bad so he’s forgetting things like how much money he had pre-stroke - and thinks people have taken his money. He’s getting angry cos we took his phone - he’s not in a place to call clients for example… so that annoys him as he thinks he’s being treated like a child. We gave him a phone but only with a handful of family in it… which he threw away. He also tells the same story on repeat for hours on end… tho obviously a mix of jumbled words, made-up words, and broken sentences. Luckily we can make out thru gestures and some patience what he means sometimes.

If it is hard for us, we can all only imagine how hard it is for him. In fact, I feel bad even talking about it being difficult for us his family. With Covid rules not changing in my area due to the Indian variant numbers rising, he’s only had one facetime meeting with the doctor. He may have to wait a bit for speech therapy sessions.

I take him walks regularly as he loves that, not being able to focus completely on TV or being able to read means he’s got a lot of pent-up energy. But again, the more frustrated and anxious he gets, the less we can understand him. Names of people and genders are alien to him right now, so he mainly identifies the family as names like, “the wee guy, the man, the old guy, the boy, him, the one…” whether female or male. He also uses birthdays and numbers like, “1,2,3,4 stop… and 2”… which means myself cos I’m 42.

So, I’m wondering if anyone else has had or has still, a similar experience with a family member, especially those with aphasia, and how they dealt with those first few weeks, maybe offer some advice on communicating or dealing with the mood swings?

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Hi Matt and welcome,

It sounds very frustrating for you, your Dad and family.

I haven’t cared for someone who has had a stroke but a friend of ours had one. Push for speech therapy to ASAP, the most rapid progress following a stroke happens in the early days.

Taking your Dad on walks sounds a great activity for him. Does he enjoy gardening/ pottering in the garden or listening to music?

A photo board of family members might be helpful for him to point to who is referring to. You could write the names underneath each photo too.

He might as find some of fastTalk helpful https://shop.stroke.org.uk/shop/fast-talk/

Melly1

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Matt, how old is dad?
Was he working or retired?
Do you live with him?
Was 6 weeks free reablement care arranged for him prior to discharge?
Has anyone talked to the family about benefits?

4

Hi there, thanks for the reply. At the moment walks are the only thing that he’s enjoying as an activity. He is unable to concentrate on TV, he can’t read both because of the aphasia and eyesight and he can’t bet on the horses which is something he enjoyed doing. The football, for now, has also finished so that’s an activity that’s on pause till the Euros.

He is getting bored due to stimulation so when someone chats to him all that pent-up energy comes out, which means he’s talking a thousand miles an hour and that also makes the understanding more difficult.

The photos are a good idea. I did ask the doctor at the check-up if a book like that would help but she seemed apprehensive… maybe doesn’t want him overly reliant on just using pictures in the absence of speech therapy.

5

Hi, thanks for the reply. He is 64, yes I live with him at the moment and so does my mum.

He had recently retired.

The only care that was mentioned was an eye test, checkup (had one Facetime, next one arranged for a fortnight late), and future speech therapy and a list of resources both local and online for information. There hasn’t been any feedback on when speech therapy will begin. I’m in Glasgow so our restrictions didn’t change so we are still in level 3 which may be to blame there?

Benefits my sister and brother have been dealing with.

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I’m a little worried because of the lack of stimulation as I mentioned. He is getting bored.

Also, even tho I understand it is hard for us his family, I’m a bit worried about how my mum is reacting to him. We’re not really been given much information on the best ways to communicate, but my mum is trying to correct him a lot. If he isn’t getting names right, not saying the right word, repeating himself… she’s being a bit too pressing and clearly getting wound up She obviously has the best interests at heart to help him improve, but I’m worried it is too early for that… and we aren’t trained speech therapists. I’m not too sure if that is doing more harm than good??? The last thing I want to do tho is making her feel bad for doing so! She also pulls him up for repeating himself or if he gets over-anxious. Like she’ll say, “YOU’RE NOT MAKING ANY SENSE”. I don’t want him retreating into himself. I also don’t feel from what I’ve read that correcting him at this stage is doing much good as it’s only been 5-6 weeks and I don’t think he’ll remember anyway, even if you did say he got the wrong name, or age, etc.

It would be good to get more information on this?

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Hello Matt
When my late husband had strokes, we were put in touch with the stroke society. They were very helpful to me, until sadly my husband had other health issues. Could you ask your GP or your Dad’s consultant to help you to get in touch with them. May help your Mother. She is probably frightened, and grieving for her husband pre stroke. I’m sure you are grieving too.

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Matt,

I don’t have direct experience of working with people who have had a stroke but I have a lot of experience working with children (and S) who have difficulties with communication for a range of reasons. Research shows using communication aids does not prevent speech developing/improving but can markedly reduce frustration and improve the person’s ability to communicate. It’s my belief that if your Dad will use photos, pictures etc to help him communicate - don’t delay until he has speech therapy. It is most likely the doctor does not have experience or training in AAC.
To help your Dad, encourage him to slow down (won’t be easy) and repeat back to him what you think he has just said, to confirm the meaning.
The stroke association have lots of helpful information What is aphasia? | Stroke Association

This charity are offering free online speech therapy to those who cannot currently get help https://www.sayaphasia.org

Since your Dad likes walking, perhaps other physical activities might suit him rather than reading, watching TV etc - such as gardening, local walking group, painting the garden fence, washing the car etc these might give him a sense of purpose and aren’t dependent on processing language.

Melly1

9

Hi Matt so sorry to hear about your dad, i have had a similar experience when my partner had a severe stroke 12 years ago.
again he became very frustrated due to his aphasia and not being able to be communicate. We started with a folder of pictures from catalogues /photos personal to him with the names next to them, and joined the stroke association (my stroke guide) lots of info for your mum and dad around aphasia. the best advice i can offer is time and patience your dad is recovering which is a slow process, when speech therapy starts they will work with your dad and help find the best way to support him. the best way we communicate is using an ipad with predictable app, although that was about 2 years after the stroke, Or a simple white board if your dad cant write now ,ask him to draw it. even now when i cant work out what Steven wants to say i ask him to draw it .always helps.
sue

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Hi, thank you both for the feedback. We’ve started making up photos and ordered some visual aids including the Fast-talk booklet mentioned above. I’ll also check those links you have given.

I’m wondering if something like this could help?

We’ve missed some daily walks because he’s stressing himself out thinking/stressing too much, which seems to be making him physically tired so he’s staying in bed a lot. Again, this means he’s lying awake middle of the night which is not helping.

He’s obsessing about money he thinks he personally had and that his business had pre-stroke. My brothers took over his small building business and the business funds have obviously been getting spent during the time he was in the hospital. He’s not able to grasp that this money has been spent on daily expenses, wages, materials, tradesmen, etc. He also thinks there was money in his bank account and cash in his jacket that weren’t actually there in the first place and thinks someone took it. My brother will explain where it went and he’s reassured and happy, but he quickly forgets and will obsess about it the next day all over again… and it gets him REALLY worked up. It’s having an effect on my mum as she’s finding his mood swings difficult… to the point him sleeping is a relief sometimes, which sounds really horrible and she feels bad.

One other thing, he woke up a couple of times from dreams he’s thought was real. In one dream he tried to explain that during his hospital spell he had his full vision come back, so is sure it will return fully… whereas the official diagnosis is it probably won’t, which he has been told. He since admitted it was a dream tho but thinks sleeping more could help him recover quicker. I guess his brain injury from the stroke could be resulting in him having pretty lucid dreams.

One last thing, at his last catchup appointment on Facetime - we have another on Thursday next week - the doctor/nurse had us answer questions while he was there obviously… which made it very difficult (uncomfortable even), tho we did try to speak honestly. I’m wondering if bringing up the above situations while he is present would be wise or suitable even?

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That is very unprofessional of the nurse. You should not have been put in that situation! I won’t discuss my son in front of him.

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Hi Matt
Welcome to the Forum!
You are not alone, we are sure that many on here will understand exactly how you feel and offer support, Caring can be very lonely and the pandemic has made caring responsibilities challenging as many carers have been socially restricted and unable to attend social groups etc.
Carers UK are running online weekly meet ups for carers and you can find the information on how to register at: Care For A Cuppa-Online meetups | Carers UK. Share and Learn-Share and Learn | Carers UK.
Our telephone number is 0808 808 7777 and we are open Monday to Friday, 9am-6pm and our email address is (advice@carersuk.org).
They provide information and guidance to unpaid carers. This covers:-
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Best Wishes
Kristie

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Dear matt_21051
Hi. I am writing a message to you to see how you are getting on and this is a follow up message from the initial message I wrote to you. I would like to know and ask you whether or not you are coping and if you find the Carers UK Forum beneficial and helpful to you. Please leave me a message to let me know how you are getting on.
Best Wishes
Kristie

14

Hi Matt,

Welcome to the forum. This has been a difficult time of change for all your family. You have my every sympathy as my husband had a stroke and subsequent aphasia last July. Thankfully he doesn’t have any of the physical side effects usually associated with a stroke, but it has affected his behaviour quite badly in addition to his difficulty with finding words. He refused speech therapy after the first 3 sessions with the speech therapist, so we just have to help him think of the words he wants to say. I find we have to have a lot of patience, especially when frustration comes knocking.

My son, who is a few years older than you and who lives about half an hour’s drive from us, comes every few weeks for a weekend to do outside jobs for us and to give me emotional support. He has also come and taken over looking after his dad when I have gone away for a weekend break with my sister - when that was allowed. I call him my rock. I’m sure your mum is glad of your support also.

You and/or your mum might find it helpful to join in one of the Care for a Cuppa sessions , which have already been mentioned.

Gilli