Ideas for communication & new hobbies: severe aphasia (just yes/no - but mixed use) & suspect little/no reading ability

Hi all, my Dad (78 - previously very fit and well) had a big stoke in November 2020 with severe aphasia as a result, and suspected dyspraxia.

Communication:

His speech is now limited to yes and no, but he doesn't always use those consistently. We think he understands the majority of what we're saying, as long as we move slowly between changes of topic etc.  He responds to lots of straightforward things - e.g. can you pass the water, do you want a cuppa etc.) We don't think he can read much - he will flick through the newspaper (which he used to spend a long time reading) but doesn't seem to read any/much. We've tried a communication app and some communication board type pictures which he doesn't seem to engage much with.  We've tried using thumbs up/down but he hasn't initiated this though he will sometimes respond when we do it.  The last month of so he has much less energy and seems to be engaging a bit less in conversation - and we think it's probably related to some depression and the sheer frustration of not making progress when he does try to communicate.  Sometimes he'll want to say something and unless it's on topic we try to narrow down potential topics to get to it, and it's almost never possible as it could be anything!  Does anyone have ideas of different ways of communicating that have been helpful?

Hobbies

Dad's hobbies were mainly studying and reading and academic type pursuits. He doesn't really enjoy the TV.  We've started on some dementia-friendly puzzles that he is engaging with which is great.  Does anyone have other ideas around new hobbies he could try - when limited by speech and reading ability?  Things like TV, radio aren't so good as he can't follow them.  We'd love to have things he could engage himself in and spend his time on - that would be fulfilling.  

Sorry super long post - but would be great to get any advice from others who have gone through something similar. 

Thank you! 

Hi Beth, there is a stroke information leaflet on the website which covers aphasia and a bit of dyspraxia which hopefully you’ve seen. I’m assuming that Dad was/is being helped by a speech and language therapist. Has his mobility been affected by the stroke together with communication? There is an Australian fact sheet which covers dyspraxia: Understanding Dyspraxia after Acquired Brain Injury which explains what is happening. It may help to work from the basic “what’s been affected and how” and this will help firstly to make sure you’re communicating with Dad in the best way for his current ability and then tailor some basic exercises for his rehabilitation. In terms of general stroke effects Dad will be left with fatigue, dizziness,low mood etc, amongst trying to make sense of what’s happened. It’s a brain injury, improvements will be slow, very slow and Dad needs to go at his pace(which he probably doesn’t know what that is!). David (another contributor on here) pointed to some interesting videos on YouTube by Andy Dovey where he shares his experiences of a brain attack. They are very relatable and worth a watch. I’m conscious that I haven’t given you the exercises you may need but I don’t have the injury that Dad has. Dad’s brain will be in a muddle but will settle. I was unable to communicate in the first few weeks but the therapy I had in hospital (10weeks in total) got me on the right track. Then it’s practice, rest and time. Best wishes Pat

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Dear Beth

it is up to Dad to opt for his chosen way forward. You cant do it for him.

Aphasia is so slow, and us sufferers know how slow we are. All we hear is a blast of noise. We have to sort the blast in to words, place the words in to order, then process what those words mean. We then need to work out our reply, find the words then sort the words in to order. Then we need to get our mouth and tongue to speak those words.

so conversation has to be unambiguous and you need to wait for a reply. Do not "help" by guessing what we are saying. 

My aphasia started to ease after three months and i could converse after six months. I am ten years your Dads junior.

Most of us change. A lot.

i am an FCA but no way can i attempt any professional tasks. I help by making tea and coffee and waiting on tables, at the village hall. This took me about two years to achieve. At least i feel useful.

i can do a lot of gardenning, just slowly.

i like to be outdoors, on my own. I utterly adore my cat, Sooty, who adopted us a year or two after stroke. He doesnt mind me being disabled, he accepts me exactly as i am. He is the first pet of any description. We do change !

i was aware of depression attacking me. As i had depression some years ago, i was determined it wouldnt get me. Really dont want to deal with depression.

sorry about the length of reply, i am trying to pick the bones out of issues that just might help Dad.

you might keep a diary briefly noting how Dad progresses. Just a line a day.

things do improve.

colin

 

 

 

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Hi Beth

So sorry to hear about your Dad.  Is your Dad receiving Speech Therapy, Physio etc at home?  They are the best people to ask as they should have put a care plan in place for him. Sorry if I am assuming too much by him being at home - I'm just going by the time scale and the fact that hospital wasn't mentioned in your post.

Prior to my stroke, I also loved to study and read. However, soon after I realised that my stroke had badly affected this. I couldn't hold my head down to look at a page of text without going dizzy - still can't and I am 4 yrs nearly post stroke. I couldn't read many words before the text starting to 'lift off the page'. My mind wouldn't concentrate long enough for me to understand what I was reading so consequently I was reading the same sentence over and over without a word sinking in.  This may be what's happening with Dad but he can't find a way to explain it to you.  Certainly spending time on anything will be something that will come with recovery but this takes time.  Fatigue is the main symptom of strokes. In the early days, and 5 months is early days sadly, all your brain wants to do is re-wire itself and this saps every ounce of energy your body has left.  He will figure his way through it but only he can do it and it's not something that can be rushed.

At the moment, your Dad will probably just want to rest rather than have various things suggested as to what he can do.  The occupational therapist gave me some play putty which is basically plastercine but not as messy. This helped me a lot to gain movement back in my fingers and hand.  I also had a stress ball which I used to squeeze regularly when I wanted to air my frustration at my family but didn't because they didn't understand that I wasn't being difficult, I just wanted to be left alone to deal with it myself.  

Recovery is possible but it is painfully slow and this is the hardest thing for families to deal with.  As Dad's recovery progresses, he will find ways to deal with things and find things that he likes doing. If his conversation is getting less, it may be depression but it could also be fatigue and frustration that he can't yet do things as before.  Wishing him all the best on his road to recovery.

Hi there, thank you so much for your thoughtful reply, I really appreciate it.  Dad was in hospital for about 8 weeks (3 weeks acute ward - mainly Covid delayed the transfer, then 4-5 weeks stroke unit) and has been home for almost 4 months now. We have had very little support from social care / NHS in terms of SLT and physio. The hospital discharge notes around Dad's SLT basically suggested there was no potential for improvement so he had no community referrral for SLT.  He had community physio come twice, but it was very basic.  We looked for private SLT but couldn't find anyone to do home visits (covid related and slightly rural related) so set up some zoom-based SLT with an SLT Consultant.  After about 6 weeks we have paused this, as Dad seemed very exhausted by it and wasn't very enthusiastic about doing it - I think online is terrible given Dad's communication needs.  He does private neuro-physio once a week which is great, and then Mum supports him with exercises in between.  It feels like we are trying to find out way without much professional support. 

It's so helpful to hear how the experience was for you.  Dad is certainly very fatigued, but we worry that he also sometimes looks a bit lost and wants to be doing things - he goes to his study and shuffles papers around and wants us to help him review bank statements etc.  But I'm very aware that we're probably projecting our worries about what Dad used to enjoy with what he might be wanted to do now - and his brain is totally re-wiring.  He enjoys puzzles, so I think we will continue with those - and I like the idea of the putty and stressball - I will look in to that and see if he appreciates those. 

It's a long journey from family and friends to re-wire our thinking too - I need to remember it's a very long road.  

Thank you again, and sorry for a long response! 

 

Hi Colin, thank you so much for taking the time to reply and for sharing your own experience with me, it's really helpful to read. I think we need to give Dad space, and not try to rush him - that's really good advice.  It is so tempting to try to 'help' him, but in reality perhaps it is mainly helping us feel better about everything.  

Dad doesn't have any speech other than yes and no, so we do end up trying to guess when he is persisting in trying to say something - but we need to keep this as simple as possible. 

It's great you're now helping at the village hall and have found ways you can connect and engage.  I can imagine how lovely it is to have a cat.  We used to have a dog who Dad loved, but perhaps in the future we could think about a cat, having pet cuddles and acceptance is a very healing thing!  

Thank you again so much for your reply. 

Hi Patricia, thanks for taking the time to reply, I really appreciate it.  The hospital SLT discharge report basically suggested Dad had no potential for improvement and so he didn't receive any ongoing referral for SLT support.  We have tried some private SLT which unfortunately was online (we haven't been able to find any home-based SLT yet but will keep looking - a mixture of covid and rurality) and he did that for about 6 weeks but he found it very exhausting and wasn't really enjoying it so we have paused that for now. We've read quite a bit around dyspraxia and aphasia but I guess you need the professionals to help work through good communication working within the abilities as Dad managed the stroke effects.  I'll check out the Andy Dovey videos, that sounds great.  I think rest and time, and we will continue to look for a SLT who can help with the practice and do what we can in the meantime!   Thanks so much. 

Sadly, after care for stroke survivors is pitiful at best and non-existent at worst.  A lot depends on your local hospital trust but I got 3 visits from an OT and left to get on with it myself.  I remember asking the Stroke consultant in hospital how soon it would be before I recovered.  I knew very little about strokes then even though I was 65 when I had my first, I had never known anyone who had one so didn't understand any of it.  He smiled at me and said the fact that I was healthy and fit meant that my recovery would be quicker than those who weren't as fit but it was a long journey ahead of me.  I answered him saying "Maybe I would have been better having a heart attack?"  "Oh yes - absolutely. We can fix hearts no problem but we can't fix brains - well not yet anyway!" And winked at me.

I think that is the biggest problem. Strokes are so underfunded and everyone's stroke is different depending on which area of the brain is affected.  It will need billions spending on it I think before there will be a cure but we live in hope.

Like your Dad, I have had to pay private for most of my treatment.  Thankfully I found a fantastic neuro physio near me who has been a god send.  Hope your Mum is coping with it all too. It is hard for partners.

my stroke and the mishaps of the hospital in delaying treatment. Due to the consultant arguing with me that I’d had a migraine.

I am a migraine sufferer with aura but what I experienced was certainly not a migraine.

It has been recently diagnosed as acute left Cerebellar lacunar infarct I was aged 59 I’ve just turned 60.

I am very depressed, emotional and suffering with headaches and problems with the medication such as swollen ankles, on top of that the consultant will not admit I had the stroke the day I went into hospital 17th March as nothing showed on CT scan, however, I was discharged the following day with no medication and an appointment for MRI scan on 26th March which showed my stroke left back. Then I was telephoned by the consultant who saw me in clinic on 6th April to “tag on her list next day at 12:15 for a catch up”. Which she insisted I hadn’t had a stroke on the 17th March but, said miraculously I had it when I was home between 19th March and 26th March before my MRI scan! She gave me medication and dismissed me with an appointment for November 2021.

I have since been back to A&E with problems twice and very distressed about the whole  issue.

My daughter lodged a complaint and the consultant phoned me at home to ask why. I put the phone on speaker phone and give it to my husband to talk to her where I taped the whole conversation, she told my husband he should be grateful she treated me and wouldn’t listen to him. Continued to talk over him explaining I hadn’t had stroke on 17th March (again).

Next few days after telephone conversation we received a letter saying the same details. She's very insistent cannot considering I know the difference between a migraine and a stroke the symptoms I went to hospital with were classic stroke signs.

I’m very confused and shocked at my whole experience and guided to you by my GP to talk to someone.

Hello BethC,

 

I'm a Stroke survivor but I volunteered for the Stroke Association in various community groups for several years.

I found I could get good engagement and interaction from people using a computer or tablet and showing pictures of everyday things or animals and encouraging the person to just say what it is - I'd work through the alphabet and for animals sometimes try to mimic the sounds they make (eg roaring lions, woofing dogs, miaoing cats, etc). once someone gets the confidence to try to make a noise, things sort of flow from there.

For other hobbies - I found people with Aphasia often liked doing jigsaws, something people with only the use of one hand can do.

Just some suggestions, anything that encourages interaction is usually good.

 

Damian

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Dear Beth

poor Dad does have severe disability doesnt he.

the agonies i went through trying to speak, are nothing compared to Dad who cant converse. I could also type and i imagine thats beyond Dad. Where i am also lucky is that recovery for me is always near by. I knew i would be able to manage most things. I never had to go along routes for communication etc.

i believe there are devices to help severely disabled people to communicate. But i know nothing about these. I think they might be ipad type devices with pictures, but not sure.

another snippet....many of us get one good day then one bad.or two good, one bad etc. i felt my brain simply insisted on slowing me down, so it could catch up or repair. 
 

we share many common issues, but no two strokes are the same. There are a million of us in the UK but no two are the same.

i wonder if dad can smile. Smiling helped me through many very hard times. I would force a smile, fake a smile or false a smile. They all helped. A lot.

Best wishes

colin

This is a reply to the post from Loshy under this thread:

It is very sad to read about your experience and treatment after stroke. It is very important that you receive the appropriate support and treatment going forward. My suggestion is to speak to the stroke association helpline on their number 0303 3033 100 and ask for their advice. Look at the Rightcare Pathway Stroke on the England NHS uk website which outlines what should happen to patients admitted with stroke. Look at the Citizens advice website: Complaining about the NHS. Many of us are fortunate to have received very good nhs treatment, sadly there are cases that fall short of these standards. There are complaints procedures which you can follow but you also need to be assured that you have received the best treatment and can be given a second opinion if you are not happy. Hopefully the three options I have mentioned may help. 

Thanks Colin, i'm so glad you've been able to speak and type - what a blessing. 

While Dad's stroke is severe, he certainly has kept his smile - he always had a great sense of humour and while I know he gets frustrated and exhuasted, he does laugh and smile with us too - which is a real joy and lift. It's helpful to read about the up and down days - good to be prepared for this! 

All the best to you, Beth

 

Thanks Damian, that's really useful.  I have tried pictures on communication boards, and had a communication app which Dad didn't really engage with - but I think from reading more on this site it's worth coming back to things to try on different days as Dad will have good and bad days, and the brain is rewiring all the time.

Dad is enjoying jigsaws - we found some that are for people with dementia that are a good size and picture that he is engaging with, so will keep going with that and see if anything else similiar is good for him.

Thanks for taking the time to respond.

All the best, Beth

Thank you for replying. 

Hi again, I've seen another member of the stroke team who was lovely. My daughter came with me. All my questions were answered and I'm having a echocardiogram early July. Also bringing a heart monitor home for 3 days and seeing the  consultant in 2 more months. I feel calmer thank goodness. We are lodging a complaint as the doctor who said it was a migraine will still not admit her mistake. It's worrying as the ward I was in there was a lot of elder people and some had dementia. Very sad ?