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
Written by
Katet68
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Hi Kate, I have tears in my eyes after reading your post. Although the struggle has ended for my darling, I weep for all of you still battling on. I know our sons felt the same as you. Even the one who came weekly was shocked by the change that had happened since his last visit.
It's difficult talking to someone who gives little or no response but if V is going the same way as my husband, she will understand everything so speaking normally telling her about your life, especially of any funny incidents may help her see that you are OK (even if you are not). I didn't want my husband worrying about us. The boys also spoke a lot about the memories they had, funny things he did and said and there was nearly always an acknowledgment; squeeze of the hand, thumb up, even if only by a centimetre.
Your parents are blessed to have a daughter who shows such support and my thoughts and prayers are with you all.
A big hug from me to you, Kate. Have made the connection. You do so well to visit! As you say, it is so hard since there are noticeable changes, even in short periods.
Kate, your Dear Mum and Dad are so lucky to have such a caring and thoughtful daughter, your post had me sobbing. We have two sons, one often rings and checks how things are and the other tends to put his head in the sand, neither are good at actually talking frankly about what is happening to their dad but I have to accept this although it is sometimes too much to bare. They both live over two hundred miles away, one son tries to get to see us every few weeks and the other needs a bit of a nudge and I find that upsetting and can get a bit resentful. This horrible disease certainly tests out all of your emotions and unfortunately some are a bit ugly and I wish I didn't feel them.
You are a lovely daughter with a wonderful dad and I am sure an amazing mother....You know, all the many years I have been on this site, I'm not sure I knew (more likely forgot) that you were Georgepa's baby girl.
As NannaB, said, your mum hears you ....and loves to hear you...My kids are right now talking to each other about their life with dad...He can hear and is happy....
A very powerful post Kate. You will get through this, so will your Dad, there is no other choice. More importantly, your Mum will be demanding that you both do!!!
Your Mum will still be able to hear and understand you, even though she can't show it.
Your words are so true Kate.Our younger daughter tries to get up every 3 weeks to see her Dad and every time sees a deterioration.She is a staff nurse in Doncaster so it depends on shifts etc as to when she can get.She found it very hard in January arriving home to see me and no Dad as he has gone into a nursing home.I just couldnt manage any longer.The care he is getting is good but he has had a bad week with falls and looks battered and bruised.I will be there this afternoon with one of the dogs,she often gets a biccie from the staff !Spent yesterday up in Newcastle at our elder daughters and had a big grandson fix,so nice and come August we will have another addition.My husband loves seeing our grandson but gets v sad cos he cant hold him on his own.Keep going Kate you are a star.I am so thankful that i have 2 gorgeous daughters xxxx
My daughter is in her mid thirties with a young baby, she struggles as like you she has lost the dad she knew, and like you I know she worries about me. From the carers perspective try Not to worry, be proactive , ask dad to put a folder together with all Mum's bits in, a contact number if he is poorly so she can have immediate care in, most areas have a single point of contact number you can access 24 hrs, I know this info reassured delma tremendously.
We are strong as care givers, acceptance is the only way forward in my opinion, of the illness, of the way life has cascaded down and the unpredictability and chaos this crap gives us
I have no beliefs never have had, that is my choice but have always been fascinated by people's faith, I think the Buddhists have a lot going for them, they accept that there is no permanence, anyway enough of this too maudling as my mum would say.
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