aphasia induced frayed patience

OK, so can someone tell me how to remain sane when your husband has expressive and receptive aphasia? He thinks he's communicating fine which means he thinks I've either gone mad or am being deliberately difficult. I'm using a total communications approach as much as possible, but he doesn't recognise the problem, so the effectiveness of this is limited.

Over a year after his accident and we are still a long, long way from any kind of normal with my husband still in rehab during the week.

He comes home at the weekend for three nights and by the end of the second day I can feel my patience leaving, making me snappy and over sensitive. This is completely unfair on my husband who is amazing and working so hard despite not really understanding what has happened to him.

Does anybody have any words of wisdom?

Thanks

Charlie

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  • hello again .. well dont realy know what to say here , your a brave lady thats for sure ... we all have our breaking points and limits, no matter who the patient is ... its been a year! early days yet and more improvements to come over time .. i suffer from a speech problem all be it not as what you describe but i seem to slur my words as though ive have had a few pints .. and i dont notice it which is somewhat anoying when people ask me have i had a drink .. it wears thin that after a bit , so maybe your husband doesnt realise hes not making himself properly heard as we would recognise it .. after all when we talk to ourselfs it makes perfect sense .. do you find his speech or his behavoir gets worse towards the end of the day or when hes had a difficult day .. i find that i slur my words more when im tired .. not much words of wisdom im afraid but maybe an insight i may have touched on ..

    best wishes Paul

  • My husband has these episodes too, it's not something that has an easy answer in my experience. I've read your blog from start to finish recently and found myself nodding and crying in the same measure as you seem to have been through a similar (if more extreme) journey as we have. My husband gets worked up very easily, we have two girls (age 8 and 9) who test his understanding daily. What we did is found a time when he was relaxed and not in the slightest bit tired or crotchety and discussed coping mechanisms. We have strategically placed cans of coke around the house and he knows that if any one of us pick up a can of coke and shakes it then he needs to back off and go somewhere to cool down. The rationale behind this is that if we open the can of coke when he is 'shaken up' then it will explode, like he is doing but if the can of coke is allowed to settle down then it can be opened safely with a much better outcome for everyone. It has to be agreed up front though otherwise he'll just think you're trying to be even more difficult. Explain to him that it's something to try and see if it gets you anywhere - good luck! For the record, you ARE doing an amazing job ;) Keep on your journey, it's worth it in the end, keep telling yourself that you are well past the worst and during the moments of 'I can't cope!!' remember where you were 6, 9, 12 months ago I find it really helps, we're 6 years in!

  • I've just been reading your blog. I was totally able to identify with your need to get away all by yourself. I was saying the same to my friend earlier in the year. I just felt like you I needed sometime just to sleep or whatever without having to worry about anyone. I didn't do it but went with friends for a short break. The friend that could most get my need to be by myself was a friend whose daughter has a TBI. I'll be following your blog it's good to hear others experiences and see how they cope. Keep strong.

  • Hello Charlie. I do sympathise with what you are saying as my husband too has both expressive and receptive aphasia. He had a brain tumour and was operated on 18 months ago but was left with this condition after surgery. Prior to this we used to travel a lot and we loved meeting people and learning about new cultures. My husband was a lovely sociable man, very witty and funny and always interesting. I feel that I've lost the man I knew and I miss him terribly. I think that's what makes it all so difficult, he looks the same but he isn't. I too get frustrated with not understanding what he's trying to say and some days I feel I've had no normal conversation at all. We do have a cat who adores him and is always sitting on his lap and he chats away to her, so I'm very grateful for that as it seems to keep him calm. I have some help once or twice a week which allows me to do my own thing for a few hours. I have good and bad days and some days I feel like screaming as he can be quite awkward and demanding. He is very dependant on me as he's unable to wash or bathe himself and needs help with getting dressed. I am now his full time carer. I'm not sure how dependant your husband is but I was recommended to get the book "The Selfish Pig's Guide to Caring" which is a life saver for me. I tend to dip into it and read passages when I'm having a particularly difficult time. There's lots of good advice and it made me realise that some of the extreme feelings I have are quite normal. I hope things work out for you and that your husband does improve - it can take an awful long time.