How do you get over that feeling of being totally powerless to help the one that needs you the most?
Mum is so scared of the unknown yet so brave that she keeps it all in. I hate this dreadful disease that has taken away her dignity. Mum struggles to walk, sore joints and when she forces herself to do so, she is constantly knocking into things. She is forever coughing/choking and does not have the strength to get rid of what ever is there. 'Will my coughing get better Sarah" "no Mum" "it won't get any worse though will it' 'Yes mum, it will'
I detest having to break the news to her, the news no one should have to hear.
Not one profesional has explained the illness to her, we were even advised by her consultant not to google it as its a nasty disease. Are we to go on just wondering? Of course I have googled it and as nasty as it is, I need to know what we are up against if we are to support her..
She now has disposable pants, 'I'm disgusting aren't I" " no mum it's the illness, it's cruel"
We get a wheelchair to make getting around easier, however if she sits for more than an hour she is in so much pain to get out she can hardly move. We change cars to make getting in an out easier, two months later she can hardly get in.
Eating time brings dribbling, choking and spillage. Just getting her to the table is a chore.
"What can I do to help you Sarah" mum will ask, nothing mum is the only response I can give.
Yes we have good times and we have lots of laughs, but at this moment in time when she has a cold that wipes all of her energy, and the worries of it turning into a chest infection, then the good times seem like a distant memory.
All I want is some answers from professionals and for someone to explain to my mum other than me, that she is not disgusting. PSP and what it does to the sole is disgusting.