I have been AWOL for a few weeks due to circumstances beyond my control. Namely that my husband had to go into hospital for an operation and I had to go into respite care. Now my husband is home and he collected me, so we are starting another page and hope we can settle down properly in our new home.
Unfortunately the place I went to doesn't have WiFi, free or otherwise, for 'clients'. So I had to make do with books, magazines and using my iphone which is rather expensive. But I am back and can catch up with my blogging and the news which I have missed out on.
The care home was OK and I did have a single room thankfully. I could shut myself away and read to my heart's content. That suits me fine even if I have to read the books a few times so as I can remember what they were about! The problem I had there was NOISE.
I have mentioned before that my Aphasia causes me to be troubled but background noise. In the care home I made my way to the dining room three times a day and unfortunately I had to leave at the earliest possible moment. I felt I was running away and being rude to people.
The talking all around me, the clatter of crockery and cutlery and sometimes there was music playing too I would be in tears. I told the staff and they were very kind but of course could do nothing about it. I did eat in my room a few times but because I wasn't mixing with people I isolated myself. I couldn't go to any of the television lounges because of the noise as people were talking while others tried to watch the television. I preferred to have my radio on and listen to classical music; much more soothing.
I took myself to the local church on a Sunday morning and the actual service was fine. Afterwards they were serving tea or coffee so I went through to have a drink. At first all was well but then people started to come in and the talking got louder and louder. Added to that the clinking of cups and saucers, I drank my coffee and said I had to get back for lunch, which was true.
I am hoping I will manage this Sunday as our church is holding it's Harvest Festival lunch. We have decided to go and I am wanting to see people and mix with them. I hope I can cope for an hour or two, if not I will have to miss out and so will my husband who will have to take me home.
I have explained to people the problem and hope upon hope that they will follow the guidelines in communicating with me. All you can do is tell people and ask them to follow the advice but you cannot force them. Although I know my husband will remind them if need be.
The worst experiences I have had with noise has been at the hospital. I had a little problem with my eye and had to go to an out of hours eye clinic. It was quite quiet when we arrived and then people started to arrive. A lady went into the doctor's room with her son and daughter (they were all adults and not young). When they came out they saw some people they knew and chose to stand directly behind my wheelchair. They talked over each other getting louder and louder until I was in tears. My husband stood with his hands over my ears and a nurse was in the waiting room so she came over to see if I was alright. My husband explained the problem and she took my letter and got me in to see the doctor immediately. The doctor was very helpful and spoke to me giving me time to answer. The only thing he checked was that I could understand what he said. I had another bout of what I term 'noise panic' in the cardiology waiting room but it wasn't as bad as the eye clinic.
I have tried to find a solution to the problem and had some advice. Certain headphones have a switch that will cut out background noise but I am not sure how they would work with me trying to listen to someone having a conversation with me. I have also seen directional microphones that fit onto eye glasses, they have a earpiece at the back of the glasses' arm that goes into the ear. Again I am not sure how efficient they would be. I would be willing to try them but first want to know more but they is little on the Internet about either the headphones or the glasses. I want to ask my speech therapist but she is away for a couple of weeks and there is no one else to ask. Aphasia groups and websites don't have anything on this problem yet it isn't rare.
I have tried to explain what it is like having the background noise problem. People don't always talk quietly even if there are just two people having a conversation. In a waiting room or café there may be 20 or so couples, all talking and trying to hear over the other people. The hubbub gets louder and louder. This is how it is for me but someone like my husband says the noise isn't very loud it is bearable but to me it is like being at a cup final match every day with people making a huge noise. I am told to block it out but that is the problem I can't.
The stress and strain of the background noise is everywhere in shops, the post office, in the street everywhere I go. Of course it takes it's toll and my speech suffers as I get tired and frustrated. Aphasia can and does vary from day to day. I, like others with Aphasia, have good days and bad days. In a book I was given on Aphasia there is a drawing a man is saying, 'some days I can talk the hind leg off a donkey. Some days I can't talk at all.' Things can make it worse, as I have found, tiredness, being frightened, being anxious and being upset.
It says that if you know what causes these fluctuations avoid the things that make talking more difficult for you. Moving away from noisy situations or asking for the noise to be cut down. I understand that but how can you tell a waiting room of people or a shop full of people to stop talking?
I felt I had achieved a lot today as I went shopping with my husband. I did have to leave him to pay and wait outside the shops on occasions but how could you tell a mother whose child is in total meltdown to keep it quiet? All I could do was leave the shop. Some advice is not always helpful or sensible we have to manage the best way we can, we know what would help and make it totally bearable but we have to live in the real world and the real world has to work for everyone without exceptions.
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