What to Expect? Aphasia and Dyspraxia

[Guest KateG]

Hi, I'm Kate and my mum had a severe stroke just over two weeks ago. Luckily she is almost physically recovered after initial limited use of her right arm. Her face is numb on the right side but looks OK.

BUT she is having great problems with speech, auto responses are fine but the more she tries to say something the harder it is. Initially she would often just laugh, and we would say 'tell me tomorrow' but now she is starting to get really cross and also crying which is new yesterday. She won't look at any get well cards or letters, we know she can read a bit but not all the words.

My step-dad is 80 and in good health but I am not sure how much he will cope with when she comes home for good, she is on a 24 hour 'home trial' this weekend.

Yesterday my sis went to see her after a week gap and noticed a massive improvement but was so upset by mum's crossness and crying which I hadn't experienced the day before (I can get over more often as I am nearer and my kids are older) I have seen her almost daily except for a 4 day break while she was transfered to her local hospital as the stroke happened in Kent while they were on hols and we live in the midlands.

Sorry to go on so much, but it is all new to me and I am trying to learn as much as I can and think people who have experienced stroke in the family will be the best help

Thx Kate xx

[maggie]

:redface:Hi Kate, welcome to the site, sorry to hear about your mum it's such a difficult time for you. I had a period when I couldn't communicate it's embarrassing,exhausting and yes it makes you cross and emotional I got really angry with myself. I felt very vulnerable, all of which made word search more difficult. Just keep reassuring your mum that she will get help and support it's early days still! I am quite sure you will get more advice and better than I can give on here.Give it time!Hope all goes well for all of you.Maggiex

[Guest KateG]

Thanks Maggi, it's good to know that it will get better, just trying to persuade mum that it will is hard. She is a well-read and well-travelled person, very independant and always looked after my step-dad to the extent I have had to teach him how to use a mobile phone, washing machine, oven and microwave. He is great, very patient with mum but no spring-chicken so we need to watch out that he doesn't overdo it!

Kate xx

[maggie]

:redface:Hi Kate, well there are alot of people on here who can give plenty of advice and support to you so keep looking.You have your hands full I hope you get the help you deserve. Tell your mum I know how she feels right now,it's so disapointing and utterly devastating to be in this position. I was told by a good friend of mine to be a patient - patient! Best advise ever. Not easy.Tell her I am routing for her to make a quick and a good recovery.Best of everything for you and your family. Maggiex

[Karen]

Hi Kate and welcome!

Think that frustration can also be a problem, as in communicating, finding the right word that doesn't appear automatically any more and stammering is also something that I experienced .... tiredness and sheer fatigue is another and it does take its toll after a brain injury.

Your Mum sounds like a bright lady, so would imagine that she knows what she wants to say or do, but can't quite get there at the minute and doesn't feel in control of the situation that she finds herself in .... and as Maggie has said, you do feel pretty vulnerable.

Hopefully, the visit back home will do her good and perk her up ... As for looking at get well cards, it was something that I also couldn't do .... it was only weeks later, that I managed to look at them and they made sense when I got back home ... I think that many of us in the early stages of recovery have a lot to take on board and you kind of hit self preservation mode for a bit, as the fatigue really does make you feel pretty rough and pretty grumpy too! xx

[Guest KateG]

Thanks Karen, it is brilliant to talk to people who have been through this and to know that mum will come through it. Also that you have felt the same way about things like the cards too. I think initially mum was accepting of the situation, which really surprised us because normally she is hospital phobic, but this was probably because nothing WAS normal. Now I guess the mists are clearing and she is questioning why she is there and what has happened to her. The problem is that she cannot actually ask the questions, maybe half of the sentance comes out and although she knows what she wants to say it just won't come out, and that is where she is getting more and more frustrated.

Sadly the first hospital mum was in the doctor was a complete battleaxe, the staff (who were lovely) were scared stiff of this Dr. We know mum had 2 scans there but other than there was no change on the 2nd one we did not know until yesterday that mum's stroke was caused by a blood clot - she was on meds for high blood pressure for years. We were basically treated as a nusiance, even though the Dr knew we weren't local and that we had all rallied round, rented a cottage nearby for a week so that we could be there for mum and stepdad. One thing good is that it brought me and my sis closer to my brother who we don't normally see much of.

I am hoping the day at home will have been good, my stepdad is calling me either tomorrow evening or Monday to let me know how it went, so fingers crossed he feels that he can cope or I am not sure what we can do......

[Karen]

Hi Kate,

Yes, I think that it does bring the family closer together .... it's times like these, when you realise how important family are .... even though they can be a pain sometimes!

Re: The cards, yes I wouldn't be too worried about your Mum's response ... Years later, I was told that I had them all strung around the bed canopy, but to be honest, I can't remember them! ... I could only make sense of things, when I was well enough to come home ... think that most of us are on a cocktail of drugs too ... so, it's no wonder that we're pretty bombed out and not making much sense!

Your story of your Mum's treatment doesn't sound too unusual ... which is unfortunate really, but many of us have experienced similar on here.... it does make you feel mad!

It sounds as though your Mum has a lot to come home for and that's what kept me going .... my kids and family ... am sure that she feels the same and hopefully this weekend will have helped her to realise that she has a goal to strive for.

If she's a bit grumpy, then don't take it to heart .... I think that many of us on here were grumpy so and so's, especially in the early weeks and months ... I certainly was and my emotions were all over the place .... the brain is a funny thing and many of us have swung between fits of laughter to full blown tears ... so, it's not abnormal.

Wishing you the very best ....xx

[paul99]

hi kate

im sorry about mum going through this nightmare two weeks is a very short period of time it is going to take mum quite some time to recover from it and come to terms with the effects and frustration which she is suffering because of it. i take it mum has settled in the new hospital it seems like the first hospital couldn't get rid of her any faster

mum is going to get very cross with frustration and it sounds as if she is also very scared of what has happened to her, yes you can always laugh and pass it off which mum joins in but you can only do it for so long. one thing the hospital will do before she is discharged is make sure mum will have all the help in place before they release her to go home there are several things which might help get the hospital to get the speech therapist involved although they may have already done this to help mum learn to speak more slowly and also help her with forming sentences together they should also get the occupation therapy visiting mum as well to help her move around and use her limbs if she can and get her more mobile

you could also get a magnetic board from an early learning center with letter and words so instead of getting mum to speak if she comes across a word which fails her she can formulate or point to the word so everyone can understand her or make up a list of words on little cards so she can use them don't worry about the get well cards that will come good in time the brain has been damaged and needs time to recover and heal as much as it can may also be an idea to get the hospital to get an optician to check mums eyes just in case they have been affected she may not be able to see the words clearly blurred vision you say your in the midlands may i ask where about roughly please don't worry to much i know its stupid to say that but try not to fret too much mum in time should get better and more mobile honest take care if i can be of any help yell out

[Guest KateG]

Thank you both for the replies.

I am in the process of making a photo book for mum, family, friends and favourite places with names underneath as this is one of the things the speech therapist suggested, also some simple picture chart things like you said Paul. Mum has asked for a newspaper each day the last week and appears to be reading it but when I asked if she could read every word she intimated that she couldn't and I think she is picking up enough to get the gist of the articles. Also her writing is very random, a string of words that don't make sense - 'I need to be able to' (her most common spoken phrase right now ) then 'mum' ' where' 'were' 'children' none seem to go together :confused:

I live in south Notts, mum is in Lincs and is in Boston hospital now which is only about 20 mins from where they live. She has also had ocupational therapist see her, make sure she can dress, shower etc and also do a kitchen assesment which I think were all fine. Her frustration is making herself understood and yesterday no matter what my sis or stepdad suggested she just couldn't explain what she meant and got very cross and tearful, and my sis was upset when mum took her to the ward door and said goodbye well before the end of visiting. I thought that maybe mum did it because of knowing sis had a 2 hour drive home but who knows?

Although this hospital is much better than were she was they should have 4 speech therapists but currently only have 2 and she told us it could be 3 months till mum starts to get regular treatment. We are trying to find out what we can do to help but 3 months seems a long wait

[paul99]

kate

contact the stroke association in your local area who may step up to the plate ask at the hospital and also headway there are many groups who can help you get what mum needs and to make sure mum gets the help she needs i would talk to the director or head of phyiso so see what is going to happen or even the dr treating mum the escorting your sister to the door may also be as a result of the stroke tell your sister not to worry it is still very very early days yet things will and should improve as time moves on ask if they are asking for mum to be referred to a rehab unit where mum can get intensive therapy i think her eyes need to be tested by the hospital it will take mum time to get the words in the right order one day at a time i think kate thinking of you and the family take care

Edited July 11, 2010 by paul99

[JayKay]

Oh how I know how you feel! My mum had a severe stroke 4 years ago and then she had aspiration pneumonia, then C diff and MRSA (all this in a French hospital). It was awful to see her struggle to take each breath. She was in the hospital 6 weeks then moved to a stroke rehab place. With speech therapy, occupational therapy and physio she improved in leaps and bounds. Her speech at first was like someone sleep talking but now it's loud and clear, even though she still has difficulties. She lives alone again now, with the help of a cleaner and a home help, and she is doing amazingly well. Oh and as for writing, she wrote gibberish when she first started to write (with her other hand because of the paralysis), and even now the sentences she writes in birthday cards are quite often a bit bonkers!

The hardest bit at first was being told "we don't know" to any question we asked - how long will it take? will she walk again? will she talk again? etc.... But improvements keep happening so take heart!

Big hugs

Edited July 11, 2010 by JayKay

[Guest KateG]

Thanks Jen.

I think that mum has been very lucky with the paralysis easing so quickly, before the end of the first week she could hold things in her right hand again and was walking at her usual 'almost too fast for us to keep up' speed.

She could have been in a French hospital - we now think the stroke happened in the night as they caught the early morning ferry the next day. In hindsight they should have called an ambulance as soon as they got up but they just wanted to be back in England. The ambulance collected her in Dover and took her to Canterbury hospital.

I am waiting to speak to my stepdad later today or in the morning to see how the home trial went. Once we know how mum gets on at home we will know which direction to look for help in. Certainly speech therapy is needed, and as Paul suggested an eye test. My stepdad is Belgian so although he has lived here about 10 years he will need help negotiating social services etc! I just wished they lived closer, they are just under an hour from me. Still at least it's better than when they lived in Cornwall

[paul99]

kate

get in touch with headway they will support mum and you and will help with the social services and benefit agency they are very good and very genuine and will be helpful in other ways as well also there is the carers ass they are brilliant if you have a problem finding them let me know and will do a sweep for you and get numbers for you

[JayKay]

Gosh Kate! That would have been interesting, although maybe if your stepdad is Belgian he is French-speaking not Flemish-speaking?!

Good luck and you know where to come if you need any support

[Guest KateG]

Jen he is amazing - he is Flemish speaking, but is fluent in English and French as well as being able to get by in Dutch, German and a little Spanish! Puts us English folk to shame...

Good news that mum's home trial went really well and she also stayed home Sunday night, back to see Dr and speech therapist Monday morning and home (for good I hope) Monday afternoon.

I called them yesterday and they are doing fine, not needing any physical help at the moment, we just need to look into getting a private speech therapist as it will be 3 months till the NHS can provide someone.

Any hints or tips on what we can do to help mum re-learn speech would be great. I am a bit unsure of seeming patronising with the memories book, I have printed photos of family etc and put their names underneath plus favourite places but don't know if it seems a bit childish?

Thanks again, Kate xx

[JayKay]

Ah, that's a Continental education for you. I went to school in France and I speak English, French, German, Spanish and some Italian. I understand a bit of Dutch too There are similarities in English/German/Dutch and French/Spanish/Italian so it's easy to guess sometimes.

Good news about the trial. Hope she gets some speech therapy. I'm afraid I don't really know how they did it with my mum. They gave her speech therapy in French but as it went along her English came back too, funnily enough. At first she had help with actual speech and placing the tongue etc (as well as learning to swallow again) but as it went on it was more like "language" therapy. She had homework like kids at school - sentences with blanks in them that she had to fill in. Sometimes she had lists of words that she had to use, sometimes just the blanks themselves.... Hopefully you can get a private speech therapist to give her a head start while she is on the NHS waiting list? And ask that person to give you ideas of how to help? Good luck!!

[Guest KateG]

Wow Jen, I can get by just about with French but that's my limit!

Mum had a swallow test the day after her stroke and went striaght onto puree food so that was good, 2 weeks on and eating normal food

I guess mum needs language therapy, she can form the words when she can get the instruction from her brain to her mouth correct! And she comes out with auto repsonses ('Oh for goodness sake!' was her remark to a story I was telling her!)

The speech therapist has left us with homework - same as your mum - filling in the missing words, trying to make certain sounds like mmm and bbb, as much as they could in the short time they had with her in hospital. Stepdad is doing these with her for a short period a couple of times a day. My sis is researching for a private therapist so fingers crossed we can sort something out...