Obviously, although we so often feel so alone and that we are the only couple experiencing this, we did know that there were others but just couldn't find them. However, that has now changed due to the meeting last night arranged by Rebecca, from the Stroke Association, and Bev, speech therapist. It turns out that it is more to give support to carers than the actual person with aphasia (important though they are) and we could say what we wanted without fear of upsetting our partners. There were 4 of us there which was actually a really nice little group as we had plenty of time per person and after Rebecca and Bev had introduced themselves then it was basically just the 4 of us talking about how we felt etc - the main thing we all felt was guilt especially when we just couldn't guess what our other half was trying to say. We all have the same feelings of guilt, anger, frustration etc and we all feel sometimes that we just want to walk away for a while. Also that feeling of 'oh no, not another day which I don't want to start' is common to us all.
We are all about a year or more along this journey we are on with no chance of getting off. There are slight differences in our situations, but, in the main, we are all in the same boat. No-one has any answers or miracle cures, but just talking about it has been so helpful. The time passed so quickly, it didn't seem like we had been there for half an hour, never mind an hour and a half! At the end I felt so much better and everyone agreed it was nice to know we weren't going mad with all the range of feelings we have! They are common to us all!!
We will meet weekly for 6 weeks and, perhaps, we may be able to meet every so often after that (that is just me wishing) but, already, I am looking forward to the next one.
It seems to me that this is so very important because, as a carer, you always say everything is fine when it isn't and to be able to tell others who are not going to judge you, in fact they know exactly what you are saying, is an amazing feeling. This is what all carers need - despite being told there is plenty of support out there, in fact there isn't, certainly not support like this. WE NEED IT. Keep it coming I say!!
So, tonight, I can finish feeling good for a change.
Oh yes, something I have just remembered is we discussed anti-depressants and all agreed our partners do need them but were very reluctant to take them initially, in fact 1 person is still struggling to get his partner to accept them, I hope he can persuade her they are good and not an admittance of failure.
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