Living with Aphasia. My Story.

It is thirteen years since my husband had a stroke. He was just 55 years old. To me, the worst thing that could have happened is to be left with Aphasia. It is just a nightmare. Tony’s words that he keeps using are “Fine day…1..2..3” To listen to “Fine day…” twenty four seven is so hard. But that is the way Aphasia affects people, they want to say what they mean but other words come out instead. Therapy. My husband and I went through all of the therapies: Occupational therapy, Physio and Speech therapy. The hardest was Speech therapy, when I had to sit and watch him go through picture cards, communication charts, word picture cards all of which were good in their own way, but did not really help him. It was heartbreaking for me as he knew the words and pictures but could not say them. It felt like I was at the “coal face” and this was where we were. One stage that helped me to cope was when I faced up to the fact that it was not me who had suffered the stroke. This helped me to do something for me!I went back to school and signed up to do “Back to Education”, a two year Fetac level course. I took nine subjects and passed all of them with high marks. This helped me no end and helped me cope with our situation. I was able to have a full conversation with another adult. One of the things I miss so much about what the stroke did was to rob us of the ability to have a conversation together. Understanding gestures is something we use to understand what my husband wants to say. The tone of “Fine day…” can tell a lot. It takes a lot of time and patience to deal with Aphasia. You have to sit and face the person, give them time to try and get a word and sometimes they cannot find it after a good length of time. So I say we will come back to it again and we do. It is so draining mentally for both of us. But if the person can get up every day and keep going, then so can I. I have come to the understanding that no matter how hard I find it I have to ask myself, how does my husband feel? “Fine day…1..2..3…” When my husband wants to tell me something he starts with Fine day. This can mean anything at the beginning. I have to ask what it is about. Days, People, Family? It comes down to narrowing down the list. It can be very wearing, but he needs to be given the time to communicate what he wants to say. In my opinion some people find it hard to deal with a person with Aphasia. They either talk to me and ask how he is doing or raise their voices as if he is deaf or avoid trying to hold a conversation at all. I have been told by people that they knew someone who’d had a stroke talking fine now. That can happen and it’s great when it does. But I find that they do not understand that Aphasia is from brain damage. There is not a problem with talking as such, just the wrong words come out. Concentration uses up all their energy. At the moment we have a support group going for people with Aphasia and their carers. We meet once a month and it really helps both. It is two-fold. Support and awareness. My husband has a few words he uses but it is only chat. I cannot survive on chat. I need to have conversations with other people and that is why I set up our support group. All are welcome at our meetings.
Clayre, a Carer and Wife of a person with Aphasia. Living with Aphasia.MyStory.