Changes often lead to reflective moments and I have found myself in reflective mood over the last couple of days. I still haven't quite processed all my thoughts so am not sure how coherent this will be.
I've been wondering if, in our desire to keep our loved ones safe, we actually contribute to their disability. We try and minimise risk, eliminate all hazards and cover every eventuality but risk is a part of life and surely they have as much right to take a risk as any of us do? It isn't comfortable for us to see them taking the risk, especially when we are not sure that they have fully understood the nature of that risk and the possible consequences. We have only their best interests at heart but are we taking something from them? Are we too quick to install another assistive device because it will make their (our?) life easier?
As a result of a blog post on this website I have also been pondering the issue of communication and information processing. I know that PSP slows down information processing and affects speech and need to remember that I need to slow down too. I need to allow time for processing and conversation, going at Mum's speed not my own even if it takes much longer. It is all too easy to get frustrated and to speak on behalf of, or act on behalf of the person because of the pressure of time. I get angry when I hear people talking to Mum as if she were a child or worse as if she were not there but know I am guilty of doing the same from time to time.
I am going to resolve to try and enable rather than disable Mum and to give her time so that her voice can be heard.
Written by
hmfsli
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7 Replies
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Hi
Yours is a very difficult question indeed. Since my husband's death four years ago I have often pondered over this. I feel deep down in my heart that during the seven years of his disease, I mostly always did my best for him. We used to talk and laugh a lot but as time went by he withdrew more and more into himself. I learned in time when he wanted to talk and when his answers were short because that was all he could or would say. Very often his reply would be, "I don't know". I took this as a sign he couldn't or woudn't talk and I would leave it at that. There were times when I was furious with people who knew him ignored him completely or treated him like a fool. I never retaliated towards them because I never wanted to upset him. I was always there for him and ready to discuss his needs with him. I am convinced that during the seven years of PSP, that was the main thing. We are/were their light at the end of their tunnel.
I agree that this is a difficult question for all carers. I always found it hard to know when to jump in and help dad with something or when to just give him time to respond or deal with it himself, particularly when dad's condition got worse.
I always brought dad into the conversation and asked what he thought and when he didn't want to or couldn't answer I ended up making decisions on his behalf based on what I thought he would have wanted.
I got annoyed with staff in the home and friends and relatives who visited who would just talk about him right in front of him without thinking about what they were saying. I spoke to dad and said about putting on the wall the information from the PSPA Pack for ward and carers about the condition and about giving him time to process etc. He thought this was a good idea and I went through it with him and then put it up on the wall, this then gave him the way to point at the wall when people were asking him questions he couldn't respond to. Dad was relieved and people who hadn't understood the condition and this included friends and family found it helpful as well and started to give dad some time to reply.
I look back now and think I did the best I could with the knowledge I had. The one comment that always sticks in my mind from dad was when I asked him during a meeting with a social worker if what I was saying he was ok with and he nodded and then said in almost a whisper 'you're my voice now, you'll do what's right''. It made me want to cry but at least I knew then that he knew I was just trying to help.
Well done to you for sharing your reflections with us.
Thank you. I do like the way you gave your Dad control by putting the information in a place that he could point to to let people know what he required from them. That is a powerful example of what I was thinking about.
What a blessing to know that your Dad knew and appreciated all that you were doing for him too.
Best wishes
hmfsli
I could have written this! I know exaclty what you mean and I agree............. I am also trying to ENable my mum! Bron
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I feel so useless
Cause of PSP....reflections:
why don't people understand a carer can be tired? 
suitable daycare placement
Looking for silver linings... 
