Daily communications

Share your story Caring for someone
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Greetings Membas

I wonder if there is anyone here who looks after someone, or knows someone who looks after someone who has post stroke communication issues.

I am specifically looking for ideas on how to communicate effectively (two-way) with my Mum for whom I am a carer along with a few helpers.

So that you know, the challenge:

  • Mum is elderly and had no formal education, but she is EXTREMELY CLEVER and was an excellent communicator, mediator, counsellor etc before she had the stroke
  • She had very basic reading and writing skills and English is NOT her mother tongue. So aids such as cards in English are not very helpful
  • Severe stroke left her with aphasia and limited mobility
  • Mental capacity assessor determined, she probably has no ability to understand or make decisions (but we - the family do not agree with this assessment)
  • When alert she can be quite communicative, but it is nigh on impossible to understand what exactly she is talking about. On the flip side, it is hard for us to know categorically if she fully understands what we are saying
  • We know that she is very capable of asking for help and ensuring she gets it, pdq :grinning:
    • She does this by calling out, or “singing ditties” to let us know she needs help
    • She will continue UNTIL she gets the help. She has tremendous lung capacity and patience and will keep calling as long as it takes.
    • Recently she has upped the volume, maybe she thinks we are not responding in a timely manner :slight_smile:
  • From experience we can pretty much work out what she needs, but she simply can’t/won’t say what she wants when asked.
  • She is nil-by-mouth and when we ask her or offer her tea/drink or food, she refuses this with a nod off the head - very consistent.
  • Being nil-by-mouth and being cared for per text book care plan she never misses a meal or fluids and so she is [likely] never hungry or thirsty. This has been a barrier for us in terms of getting her to eat or drink. Whilst the SaLT has never been able to “sign off” the swallowing action, we (her carers) are confident she can swallow safely and have on occasions managed to give her a few spoonfuls of water - aside is spoonfuls not a valid plural of spoonful? It is being flagged by this editor!
    We would dearly love to get some headway on this as it would be so nice to know what she is actually saying or what she is singing when she does :slight_smile:

Thank you in anticipation.

Namaste|
:pray:

Peace & Love :

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Hi @ManjiB, this is supposed to be a quick reply, but I won’t be surprised if it’s long as that seems to be a promise I can never keep.

I take it your mum can read in her own language, or at least the skills? And I’m going to assume that you and the surrounding family can also read/write in that language.
So why have you not already made any cards in her own language?
And it doesn’t just have to be actual words, it can also be images too.
So to test her level of understanding, when she calls you for any wants/needs if you know what she might want, instead of just doing that, show her 3 options in either word or picture.
It would be easy enough to put together a range of pics to cover the basics such as a drink of water/tea, to plump up her pillows, to turn the TV on/off, blanket, there are even symbols for pain in various parts of the body as well as too hot/cold.

If you find she does actually understand them, then you can start to refine and expand the repertoire.

Is she bed ridden or can she sit out in an armchair?

Spoonsful is the formal plural but spoonfuls is perfectly acceptable too :smile:

Lorraine
Stroke Improvement Group

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Hi @ManjiB

I’m unqualified to help, having had aphasia for 1 week only. But your post made me think of a tip that might make sense:: stimulate the insides of her mouth with an electric toothbrush. Now it’s important to start gently so don’t use the bristle side, but the smooth side, possibly. Try it on yourself to judge if it feels right. There’s no right ort wrong just a good tip I got from the functional neurologist Arjan Kuipers.

Best wishes to you & mum,
Roland

ps. I also speak Italian, and when I started to speak, Italian was easier !! maybe because I learnt it at a later stage in life?

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Hi Emerald Eyes Lorraine and Roland - thank you both for your comments.

Roland - your suggestion of a toothbrush is good and I will try it. But just so you know, due to an incident early on in her recovery, whilst she was in hospital, the nurses used to clean her mouth with swabs. One day a nurse was so “forceful” or enthusiastic (I’ll leave it open) that Mum was hurt by the action and from then on she refused further oral care, closing her lips tightly. No matter who tried or how hard they tried (nurses, family, SaLT) she refused to allow her mouth to be cleaned. This was probably in the first three months.

I will continue with this as I find it fascinating - so she now is nil-by-mouth and refusing oral care. What to do? Medical protocol dictates you cannot force her to open her mouth - intrusion (and apparently illegal). Clearly (the fact that she is deliberately closing and keeping her mouth shut) this is a personal choice (mental capacity or no mental capacity). Answer, you have to respect the patient’s wish and so no oral care. Over time we tried to coax her but it never happened. Whilst still on learning curve, we worried about oral hygiene and had to get the GP to prescribe some anti-biotics when it looked as though Mum had some oral thrush bacterial infection.

The punch line to this, is that on all the time since she refused oral hygiene, apart from the few doses of anti-biotics, her mouth and tongue are “fresh” and totally healthy. This I personally attribute to the body healing itself and looking after itself. Nobody would believe (in fact we do mention it to the odd nurse or doctor who visits) that she is not receiving any oral hygiene. Human body - remarkable.

Wrt to Languages, we were told that some patients revert to their mother tongue after stroke. So in the early days, when we were trying to get the comms working, we were told to try using Mum’s mother tongue (Gujarati - not that that is important) to see if she responds. Our results suggest this is inconclusive in relation to Mum.

As you say you found Italian easier - given what we were told this would suggest Italian is your Mother tongue. Is this true or is it another nail on the head of myths? By that I mean, when you first started peaking as a toddler, did you speak Italian?

As I have gone on for so long with this response, in the interest of readability more importantly value to our other readers, I will respond to Lorraine in a new post.

Ciao per ora, mio ​​dotto amico!
:pray:

Strange, but true - according to Google translate, English to another language, Italian isn’t even in the top ten. Shocking!!

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Hi Emerald Eyes,

When I first read that, I was so shocked. I thought to myself, “How dare she …”

As if I wouldn’t think of something so obvious myself :laughing: But of course I know it’s you and even if you did mean it as I read it, I would totally accept a rap from you, for I would surely deserve it.

Seriously though, that is a very good question you ask. I cannot say why we did not create the aids in our mother tongue, but we did have aids in English (I think some may even have been from the Stroke Association) including picture cards. Having attempted to talk to Mum in Both English and Gujarati and not being able to convince ourselves one way or another we probably did not go down that route. This may sound like a cap out, but with 24/7 care we don’t always have time for “nice to haves” and perhaps this is what happened here.

That said, we played Music, videos and we even had a friend who is fluent in Gujarati to sit with her and read stories in Gujarati in subjects that were of interest to her pre-stroke. But nothing seemed to generate any sort of positive response.

It’s incredibly hard being a 24/7 carer and trying to do all the other things that you might hope are done by others. I really am not trying to blow my own trumpet, get sympathy or make excuses or anything of that sort, but you may or may not be surprised if I was to tell you where all the time goes. There really aren’t enough hours in the day.

You may or may not believe it, but as well as being carers, (and I should add. we have paid carers 4 x a day, but often we end up cleaning up after them (you just can’t get the staff these days :slight_smile:) we have to do nursing, physio, chase of legal things etc. etc. Being and advocate is also time consuming as in we have to speak on her behalf when seeing anyone. So with all these things going on we do have to prioritise.

For that reason, comms may have taken back stage as we focused on physical stength and comfort etc. We spent a very long time trying to get her to bear her own weight. She was bed bound in discharge and we felt this was not healthy and so tried to get her out asap. She was hoisted out into the Riser Recliner chair for a few hours a day and increasing duration as she was able to tolerate.

Whilst in Riser Recliner, over time we would tilt the chair to max, so she was effectively perched on the edge and almost standing. The idea being it is just a small step from this to standing. We got aids such as Sara Steady and walking frames etc. but in a lot of cases, they were not practical - Mum is petite (very) and a lot of the adult physio aids are too big for her to work with. We had her sitting on the edge of the bed to strengthen core and awareness etc. On a couple of occasions, we nearly had her standing and tried to get more physio to target this, but it was not forthcoming - too old, too long after the stroke, too long not bearing own weight etc. all on the phone without bothering to do a home visit assessment.

To cut a long story short we try as much as we can and when we can, but sometimes things happen which side track us and it can be a forgotten activity as new things take priority. What I mean by that, is that our attempts to stand Mum up were so close to success but she ended up in hospital for another reason and that hospital admission pushed her back so much as in hospital she is in bed all day and she is on drugs which she does not have at home. So each hospital stay sets us back so much :frowning:

We tried also to promote her independence - give her a face cloth to wash her face, give her a brush to brush her hair etc. These things work for a short time, but when they are interrupted then we are literally back to square one :frowning:

To finish with, we still see Mum in a much better place than we would expect had we listened to the experts and as I sit here writing this, she is lunching with her daughter in the Riser recliner. What more can you ask for?

We are currently trying to engage on the comms front by helping her to write her name - I forgot the answer the question. Reading and writing even in Gujarati were so very basic, so she might read a small paragraph in 10 minutes where you or I might read it in much less.

Another thing comes to mind - sorry for the randomness, but I guess it’s good for the brain :slight_smile: When we went to SaLT or comms expert with our observations that Mum seems to be responding to this or that, they would “push it back” saying that this is “learnt behaviour” and not actual intelligence or something (sorry I can’t think how to explain) but effectively, it is not worth pursuing. She is just a “trained monkey” :frowning: :frowning: Veins would be bursting, but what to do?

We do what we can.

Namaste|
:pray:

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After submitting my earlier response, another thought came to me and I will reply like this

  • Sometimes, you just can’t see the trees for the wood
  • You can lead a horse to water, but a pencil must be lead

I could do a few more of these, but I think you get the picture.

Next Month, it will be six years since the infamous incident that forever changed our lives. During this time, we have been fighting against the odds, trying to jump over barriers, trying to grapple with moral and ethical feelings/views - does Mum really want to be looked after or are we doing this against her will? So many challenging and draining things, physical and mental.

You may be aware I first visited this forum for the first time a couple of years after the stroke - I was so busy I didn’t even have time to look for help :slight_smile:
Even then I was in and out as I just didn’t have the time - too busy doing things. I took advice from those who offered it - read books, do this, do that etc.

Nearly six years past and only at the end of last year, did I have some time to revisit this forum - I only came back to update on Mum’s PEG as I thought it might help someone. It was not my intention to spend as much time here as I have been doing over the last few weeks. I thought post the PEG note and go away, but I got a response that then triggered further interaction and now it seems I can’t get off the forum :slight_smile:

Still I am trying to do this as well as look after my Mum and it is only as I seek answers as I always will but at the same time, I hope that some of my incessant ramblings may help someone.

Thank you once again.

Takes care.
:pray:

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I’ve no experience in caring for someone after a stroke but I did work with children for 20 years before my stroke. For children who can not communicate or find it difficult to communicate we use something called PECS cards. These have pictures (and sometimes text) to show different routine things e.g. snack, water, washing etc to help a child know what to expect or what was coming next. They start by learning what each symbol means and the idea is that gradually they can use the PECS cards too to show you what they want or need. I’ve just had a quick google and you can get them for adults as well as children so it might be worth having a look at.

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I dont have experience either but my thought was picture cards or maybe even an iPad or similar which has pics (possibly even an app these days) that will help.

Your mum sounds like she has her ways of getting herself understood. My dad used to have a bell which he drove us mad with but it always got him what he needed :sweat_smile:

I think you are your sister are doing an amazing job. It must be very difficult & wearing for you. I know people so what they must in these circumstances but it still shouldn’t be under estimated how difficult it is.

Hope you find a solution soon.

Best wishes

Ann

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Hi @Bigmugoftea - Thank you for your response and suggestion. I appreciate that and with your experience, I should be more than happy to try anything that might help.

I should at this point say that we have tried PECS cards in the past, but we don’t ever give up, which is why we are where we are today :slight_smile:

One of the challenges I / we had to face was the lack of knowledge or understanding about stroke and how it affects you and how you recover from it. When we started on this huge learning curve, we were told then and I believe this is still spouted today:

  • Recovery peters out after six months - I am pretty sure someone mentioned this in the last few days.

So in 2019 when we were first grappling with this we thought we only had six months to get everything done as after that the plateau will have been reached and there would be little or no further progress.

It was a very stressful period and we listened to the experts and challenged stereotypes and unconventional beliefs or whatever as much as we could and at the same time we felt “we knew best what works for us” and so we determined to carry on.

So it may be that the 6 months myth may have thrown us a little bit and then other events overtook and we got sidetracked etc.

Mum continues to amaze us and we are forever trying anything that might help, and the fact she continues to improve, presents more challenges and so on keeps us going. Here is why I can say I will keep trying and trying and she will keep improving.

The positivity from this forum keeps us going :slight_smile:
So PECS cards are back on the table. We are also trying earthing and we will try oral stimulation etc. Nothing is off the table or whatever the phrase is.

It’s onwards and upwards.

:pray:

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I tried to send you a message Manji but my efforts resulted in possibly erasing your post for a while? Anyway, I just wanted to say something that worked with a relative who had dementia who was always shouting out for help and that was simply just to sit and hold her hand. It was a simple thing to do and she seemed to find it reassuring. I haven’t read all your reply as you can see I am not having a good day today, but thought I ought to suggest it , although it’s so simple you may all be already doing that.

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Hi Shorn - I got your message. My post did not get erased :slight_smile:

It seems you replied in e-mail format rather than on this webchat thread. Sorry I don’t know social media terminology.

It seems e-mails are private so only sender and receiver can see them - I replied to your e-mail. I haven’t fully worked out how to use this forum, but we’ll get there in the end.

Yes, we also find this helps. In the main, she only asks for help when she needs something. This is something we have learnt and so we know that something is awry, but because she cannot verbalise we then end up having to troubleshoot and by process of elimination we usually find the reason for the call.

If all else fails, just by stroking her head, back or hand seems to distract her from the source of discomfort, but this ultimately would be short lived. She only ever relaxes when her need has been met :slight_smile: The only time when it is frustrating is when we can’t identify what is bothering her, because she never gives up :slight_smile:

Thank you so much for coming back to me.

Take care.

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Yes I also can’t work out how to use the site and don’t think I ever will!
It sounds as if your Mum does have concrete needs that she can’t communicate to you, maybe you could make cards for the most likely sources of discomfort and show them to her so she can indicate by her posture what is bothering her, although that’s mostly the same as what Lorraine has suggested , I think.
I also find that paid Carers create as much work as they accomplish but they are very poorly paid and over worked so that I think is a large part of the problem. And there is the problem of them having to leave almost in the middle of a task sometimes and they definitely cut corners, sometimes in shocking ways but it’s difficult be upset with them when you realise how hard they work and the nature of the work.
But I do get terribly annoyed sometimes about paying someone to do something that you end up doing a lot of yourself.
Glad I didn’t erase the post, this seems a difficult website to learn to navigate!

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:smile: :people_hugging:
I will never apologies for asking the “stupid” questions, for that’s what I call them :blush: But just look at all that we’ve gleaned from that :grin: And hopefully it will start you, and anyone else who else who reads this post, to think a little more out of the box or come up with other suggestions :crossed_fingers:

It’s like the IT service desk when someone phones up to report a computer or printer are not working, the first questions they like to ask are “is the computer plugged in and the power switched on?”, “check that the printer cable is still plugged into the computer” :smile:

You are in the thick of it both caring for your mum and any kind of life you have for yourself. You don’t think you just do! You don’t have that kind of luxury and that’s partly why I ask such question. I know you’ve asked this one before, many moons ago, I remember it. But a lot has happened in between. It’s the same for mothers of babies and young children and it doesn’t take much to upset the apple cart and a routine goes out the window. Don’t ever excuse or apologies for that, that’s just life. I’ve been there done that myself over the years with my own mum and both hubby’s parents, I know just what you are going through as do many others on here no doubt.

I did try looking up Cue Cards in Community Languages Gujarati which might help to get you started. You can tailor these to your needs, and make some additional to your mums individual needs such as for simple things like she has an itch that needs scratching.

https://www.easternhealth.org.au/patients-and-visitors/language-services/cue-cards-in-community-languages/

When you ask her a yes/no type of question, how does she respond i.e. by nodding or shaking her head? If she can do that then you know she some level of understanding. It was about the most I could do 4yrs ago, but I could understanding everything that was said and going on around me. Unfortunately in hospital, they never thought to find any alternative to communicate with me. Fortunately I was only in 5 days and once home I could make my way in my own little world with a common sense family. But I had a much bigger advantage than your mum, as I could hobble and wobble and stagger about cruising the furniture :laughing: So when mum was on the move my hubby and kids watched closely to see what I was after :wink:

Don’t just limit yourself to the NHS and SA, use any sites where communication is the main issue such as the Deaf society ( if you ever get the chance to, watch The Miracle Worker :slightly_smiling_face:),
the Alzheimer’s society, Autistic society and what strategies they use to communicate, https://www.brainandspine.org.uk/support-for-you/peer-support-groups/ is another one. Find their online communities and ask your communication questions there as well; and many of these are also on the likes of Facebook too.

Lorraine
Stroke Improvement Group

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Hi Emerald Eyes - the above is exactly my Mum and has been since she had the stroke :slight_smile: We do get her giving us Yes and No answers with her head and on occasions e.g. when the carers do something naughty, first she will wave her finger at them and have a rant, essentially saying "I know what you’ve done … " and secondly when we the family enter the arena, whether the carers are there or not, she will tell us that the carers have been naughty. She will be waving her finger and she’ll be quite energetically vocal. When this happens, the carers go on the defensive because they know they’ve been caught out.

Even in hospital, when the consultant is explaining to us what he/she will/will not do for Mum she is listening and very focused - she knows it’s her that the subject matter. Her spoken English is quite basic but she is very good at picking up the vibes and sensing the atmosphere. For example if me and my sister have a little argument in her presence, she will be pricking up her ears :slight_smile:

Is she is on the same path as you then she will surely speak soon - we are already sensing this and we know she is trying so hard. Her brain is definitely being rewired.

Lorraine, Emerald Eyes - when I first read your response, I thought to myself, I will just reply by saying the closing sentence and leave it at that, but instead I will finish by saying it as I also felt the urge to do my usual chapter and verse. I am so touched by all the effort people are putting in to help - I am welling up even as I write. The Gujarati cards and more - it’s just too much for me :face_holding_back_tears:

"Thank you and I love you :heart: :pray: "

"Thank you and I love you to everyone else who has been here for me over the last couple of months in particular :heart: :pray: "

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We it sounds to me, by your accounts, that she is fully compos mentis, just as I was.

I don’t want to raise or dash hopes, she may or may not get her voice back. That depends solely on the extent of damage to that part of her brain that controls speech. I know my speech improved further several months ago but I’m still not 100%. But my stroke was mild by comparison to your mums. I’ve adapted, I can sound “normal” by keeping my sentences short and simple. Your mum still has a long way to go. But the more you interact and engage with her using whatever tools you do decided to settle on she does still have the potential to say a lot more.

One other thing you could considered using is an electronic communication device with touch screen ability for non verbal elderly

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There’s a whole range of them out there so the above is just an sample I’ve taken off the internet though I haven’t looked too deeply into them.
They can be as simple or complex as the user is able for, and I’m sure it would take some time and patience to teach your mum how to use one, but you never know :wink:
https://www.physio-pedia.com/Considerations_in_Training_Elderly_People_How_to_Use_Electronic_Assistive_Devices

Lorraine
Stroke Improvement Group

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That’s fine - we know that you can never be sure what will happen, even when you have control over things. From what we have seen and what we know about the character and will power Mum has we have high hopes :slight_smile:

You have given us much to follow-up on and there is a lot more we are working on besides just the vocalisation e.g. Getting her to bear her own weight and stand up unaided. Today we had her perched on the riser recliner chair full tilt. She is not far off bearing her own weight supported, so who knows?

:pray:

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That sounds like really positive new and I love the idea for making use of the recliner in that way.

She is able to make sounds in her sing song way so the vocals are there. A bit like a baby prior to their first words/speech. Think about that ManjiB; do you have any experience around babies and helping with teaching them how to say words? Why not try getting her try pronouncing the vowels A, E, I, O, U, and maybe even V and W.
Maybe encourage her to sing along to her favourite music.

And something else I forgot to mention last. As an alternative to @pando’s suggestion of the electric toothbrush inside her mouth. Why not just try use one initially to run all over her face like a relaxing facial massage…just stay away from her nose. But cover the forehead, cheekbones, around the mouth. Who knows where that might lead over time :wink: Not that she really needs it being PEG fed, the saliva in her mouth will be keeping that clean anyway. Saliva has magic healing and cleaning powers, how do think any oral injuries heal up so much quicker than say a cut or scrape on your arm :smile:

Some leg strengthening exercises she can do sitting…if you don’t already know :wink:
A mini exercise ball to squeeze between her knees, for strengthening inner thigh muscles.

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And a resistance band to loop around her knees or ankles to stretch out the way…for strengthening outer thigh muscles.

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All beneficial for standing :smile:

The thing is to never lose hope. There will be days when you wonder if she’s back sliding. Those are the days the brain needs to process and reboot. I’ve had 4yrs of it now, you take a day or two off or do something different and when you back you may even find a little further progress.

I’m going to start a new post of videos with of simple fun activities for the elderly I’ve seen online. They’re all both physically and mentally beneficial without it having to feel like another physio exercise. The carers as well as the stroke survivors need regular breaks and a laugh.
I hope you’ll find them useful :wink:

Lorraine
Stroke Improvement Group

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Once again - thank you so much for all this material and trouble you have gone too. It is much appreciated :grinning:

Wonderful suggestions and we will try to implement them. My sister is the creative genius in the team and she has used the balloons to get Mum to play along and it has worked. We also use those stress ball things as a means to distract Mum when she needs calming down during care sessions.

Mother and daughter have [daily] singalongs :slight_smile: - my sister has been brilliant in coming up with aids. She scours the internet and finds things which we can try - some are more successful than others, but until you try you don’t know.

The standing aids are things we have had to come up with as we really don’t have any physio / OT input of note and what we have achieved is quite remarkable.

Your point about the break is spot on. We have found that when we forced to take a break and then return to activates, there is noticeable improvements. At times we have to take a break because my sister can’t take time off work or whatever, or sometimes she just thinks I am over working Mum and so she [sister] pretends she is busy knowing I can’t do the full physio on my own. This then gives Mum a break. My sister doesn’t quite agree with my approach of “no pain, no gain” and tends to wrap Mum up in cotton wool. Overall we seem to get the balance right - time and our bodies permitting :slight_smile: Right now we are flagging a bit.

Lovely collection of exercise videos - thank you :smiley:

A bien tot!

:pray:

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Iam so very sorry to read all these posts avout your mum. I wish I could offer some useful advice. All I can say from my own experirnce, is that she must feel very lost and lonely,in splace where she cannot help herself… Just continue to give her all rhe love and reassuranc e youcan. She is more than likely still’herself in there’.nJust keep on loving her and remember time is a great healer. It has taken me 5 years toget this far and I was never affected anyway near as bad.ly physically. But no one can see inside your head. Itcan be a frightening place. Being unable to communicate with others is one of my greatest personsal fears,
Keep trying, my heart goes out to you all. Pam

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In any muscle building and repair that muscle needs a rest day to strengthen and repair. All body builders have their full week workout plan, with rest days built into them. And heres 2 such plans

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Even I have a similar plan to the ones above.
And once every 4-6 weeks I take a week off and switch the routine/apparatus around to avoid plateaus and monotony.

The brain is also a muscle! And your mum’s is going through similar growth and repair to the body builders. Babies too, need that rest, a lot more, for the same reasons. But for the babies and stroke survivors its for also the brain’s recovery too.

Whenever you’ve had any major updates for your computer or mobile phone installed there comes that point when you’re prevented from doing anything other than than letting it shut down and reboot to complete the installation.

So, the times when your mum is being “difficult/uncooperative” take the above into consideration. It might just be a matter of change of activity or a day or two when she sleeps a lot more. It just depends on how major the update is. And the mind repels when it’s had enough of something or can’t cope with it. Believe me, the mind takes over like it is its own person and really can’t fight it when its had enough.

So stroke survivors have both physical and mental fatigue to contend with. When we say that fatigue gets easier as time goes on, that may only be because we’ve recovered from the physical trauma of it, in the same way you’d recover from any major illness or infection. The mental fatigue is separate to that. Again, consider how long babies take to grow and develope, how much rest they need, how long it took to sleep through the night, to crawl, to walk, to speak. And consider how much they learn through play.

I’m just giving you food for thought here. But I’m also trying to encourage you to give yourself permission to take a break without the need to feel guilty about it. Don’t run yourself ragged to the point you have a stroke stroke too. Be mindful of that, it can happen due to stress or it can be genetic, among many other reansons. And its not age discriminatory :face_with_raised_eyebrow:

Take a leaf out of your sister’s books😉

Lorraine
Stroke Improvement Group