So this morning I awoke to a text from my friend asking me if I was "ok after reading my Dad's last post" so just to clear things up for other friends of mine who also read this site (to try and understand more about PSP) & others who might wonder how I feel, this is how I feel.....
When I first read the post, my initial reaction was HUGE sadness as Dad and I haven't been able to speak privately since he returned home so he's been unable to tell me how it really is for him, BUT I totally get it, I totally understand and support his decision and the reason I get it (apart for just wanting what's best for Dad) is that every time I travel to Devon i get that massive shock.
I try to get down to see Mum every 4 weeks, work allowing and each time I go it gets harder and harder. What people don't realise is that prior to my journey down I have to literally give myself a talking to so that I can be prepared for whatever might face me. This is the Mum that used to be waiting on the door step every time I arrived, kettle on, hugs at the ready, ready to listen to all my tales good and bad, magazines she'd found that I might like by my bed, hours of chat and love and support and although our love for each other will always be there, the other stuff isn't.
I get in my car ready for the 4 hour drive and usually drive without stopping for fear that if i do stop, I will turn the car around and not get there. I only listen to "happy music" otherwise I cry whilst I'm driving which is never a good idea and now, on several occasions, I have had to pull over about 10 minutes before I'm due to arrive and text my friend to ask her to tell me to continue my journey and to list all the reasons why I'm doing it.
I don't want to sit with my Mum and mop up her dribble, it breaks my heart that I can't talk to her the way I used to, I hate seeing her pulled around by the carers even though i truly love them, I hate that the end of her life is so undignified. Watching my wonderful Dad cooking up little delicacies to tempt her to eat and his amazing kindness is like watching the most wonderful but most painful love story ever!
So, although my "normal" is very different to Dad's and I don't have to do the day to day caring for my gorgeous Mum, I totally understand my Dad's last post and respect his wishes.
Dad if you're reading this, I love you and if you can't get to me, I will get to you and we will cope with this however we can. One of our greatest things in common is the love of V - she's your soulmate and my Mum and the most amazing woman in our lives. xxx