How do you deal with the bad days? Please can somebody tell me? The past few days things have been very trying for both my husband and myself. I try so very hard to deal with it all but there aren't enough hours in the day sometimes. Tony had yet another fall yesterday - once again onto the tiled kitchen floor. Why does he always seem to fall on hard surfaces I wonder? He is covered in bruises and this morning is very stiff. No real damage, thank God except for the ususal bruising and scrapes - I feel more damaged than he is in many ways. I get terrible headaches when we have had another upset like this. I feel sure these are caused by anxiety. I am so afraid when he falls. I can't bear to see him hurt. I don't want to stop him being in the kitchen with me. It's nice that he wants us to be together.
He is unable to follow simple instructions most of the time, and can be very convincing when I ask him if he has understood. How do I make him understand he is at risk of falling every time he tries to get up from a chair unless I am there to help? He seems to be coughing more and more and his tremor makes it very difficult for him to do lots of things most of us take for granted.
I know all of you on here struggle like I am, and I tell myself that my low mood will pass, but as we all know PSP is really difficult to deal with most days but this is one of "those" days.
I hate this illness more each and every day. So cruel for both sufferers and carers alike. I just wish that I could get inside Tony's head to know how he feels. He tries to tell me but he can't. Our conversations are restricted to simple responses to questions. He no longer starts a conversation and in spite of the fact we can be sitting alongside one another, I feel as if I am no longer part of him. He seems to live in his own world most of the time and seldom shows any emotion whether it be happiness or sadness (or anywhere in between the two!). I think he must be very scared of the way this cruel illness has affected both our lives. I try very hard to stay upbeat in his presence but he doesn't see how many times each day I cannot control my tears. My heart is slowly breaking.....................