I am sitting here on a wet and very windy December Saturday just feeling the need to write. I’m not sure why. Maybe just a little personal therapy. My mum is in the advanced stages of CBD, she never ceases to amaze me. There is very little quality of life, functional in the main but I count every moment of the day as precious, I just remind myself that mum is still with us and although not entirely present she recognises us and can often say ‘I love you too’. It’s so incredibly emotional and upsetting to see my beautiful 71 year old mum in photos only a few years ago where she had chosen the outfit, wearing earrings and with some make up ready to go and enjoy the day or evening. Although conversation is barely there, we believe my mum can hear and understand every word we say. Mum loves her music and it continues to be a main feature in the house. Amazingly, mum remembers the words and we occasionally hear a faint sing along which brings a smile to all our faces. As we head into another year of the unknown and worry of what it may bring I give my mum a hug and kiss, I am just so glad I am 10 minutes drive from my parents. My dad keeps on keeping on and is a tower of strength, his best friend and wife of almost 50 years a shadow of her former self. He is incredible. His one wish, to celebrate their 50th wedding anniversary next September, I hope they get that.
My Beautiful Mum and My Incredible Dad - PSP Association
My Beautiful Mum and My Incredible Dad
Hugs
Here's hoping your amazing Dad gets his wish to celebrate their 50th - he deserves it.
Thank you…he really does and I think it will make things easier for him knowing they got there together.
Hugs and prayers. How wonderful it be to make to their 50th.
Tim
Thank you, it would be truly amazing.
Sending you all so much love. It sounds like your parents are amazing. 😘
Thank you, they are the best
Hi bichonbear1 !!
Thank you for sharing this beautiful story that has moved me.
A big hug.
Luis
Thank you Luis and for all your guidance and support through this forum over the past couple of years I have been on it. Invaluable information.
Love and hugs to you and your precious parents 💕🫂🌻
Thank you so much
Your post is very moving and I felt I just had to reply and I hope this might help in some way, though I realise our journeys are unique to each of us.
I lost my incredible husband to PSP 6 years ago. We had been married 48 years and my greatest wish was that we’d make it to 50 years. Sadly that was not to be but now I realise that the wonderful years I had with him before he left us were more important to me than reaching the 50 years milestone. The wonderful memories of our life together sustained me throughout grieving and beyond as I move on with my life. I still wonder how I got that lucky to have him and I’ll be eternally grateful for what we had. I hope your lovely dad gets his wish and they make it to 50 years but if not then he’ll have all those previous precious years of happy marriage to remember; good memories play a huge part in our recovery. Treasure every moment you have with your mum now, make each day a special one because none of us can predict how long or how short our lives will be.
I’m sending you and your dad my very best wishes, I know how difficult and how devastating this journey is and it always feels so much harder at this time of year.
Hils
Thank you so much for your lovely words, I really appreciate it. I have taken great comfort from them. I agree the memories are more important than the milestone, your words will help me support dad if the anniversary is not reached.
Sending you hugs and my thoughts. I understand how sometimes you just need to write things down, it's such a cruel disease. My wonderful husband and I sadly didn't quite make our 50th anniversary as he passed from PSP last year only 70 years old; we had so many plans. Life's hard without him.
Really hope they make it and you can all celebrate in style. Sorry for the miserable post, like you I sometimes need to vent ❤️
It’s important we can vent on here so please don’t apologise. Thank you for taking the time to respond. Keep on keeping strong, especially at this time of year, mybhh the lights are with you.
Hi
Such a moving post. Treasure every moment with your mum and I hope your dad gets his wish.
Sending hugs xx
Thank you for your kind wishes and hugs.
I get how you feel completely. My husband of 47 years is at this stage with CBD. As we sit here listening to and enjoying Dave Gilmour's latest album for the umpteenth time I know he is very much still with me🥰
Thank you for your message, the power of music is amazing. My best wishes are with you.
I've liked this post but "like" is the wrong response... I too am going through what you are with my mum having CBD, her speech is going and the frustration in her face is awful! Although she can say Oh God like a good un!! This has all happened so quickly, only four years ago she was living her life as best as she could without my dad who we lost due to lung cancer, but she would holiday abroad with her identical sister and her husband and he would laugh saying it was like having two wives! Now she is in a home, and at the moment is not able to get over a chest infection having been put on another lot if steroids and antibiotics. I'm a nurse and have been for 30yrs and have dealt with all sorts but when it's your own it's different! I know what to expect and have to be strong for my sisters A) because I'm the oldest and B) because she doesn't know what to expect and it's bloody hard! You and your dad sound like great people and are doing the best for your mum by being supportive and being there for each other. I find this group really comforting to know that there are people who understand what each other are going through. Thank you for sharing x
Thank you for your reply, you are so right about the comforting nature of this group. I hope your mum is shaking off the chest infection, it’s so tough on their weak bodies. Mum has had 3 seizures this week and you just wonder how much more she can take. I am the eldest of 3 girls too, you do feel the need to be the strength, I understand that. Take care.
I get it, my Mum has PSP and CBD is in a nursing home and on my visit today she is struggling to talk, move appears to be struggling with drinking fluids so has another UTI as she won’t drink enough and refuses anything other than coffee or coke.
We did her Christmas cards today and she just about managed to sign her name. But when I was asking if should send people a card she was didn’t know who half of them were.
Christmas seems to make everything more difficult for me, I’m sure it’s the same for everyone.
Thank you for your reply, Christmas does seem to make it more tough. It’s difficult when a little bit more of our loved one leaves. I will treasure the last card I have that mum was able to sign. Take care.
Bichonbear
Your words ring so true......I fear what next year brings for Ruth but at the same time it is still lovely to have her here and knowing she does understand what is going on around her.
Richard 🙂
Thank you for your message Richard. I have read your posts about Ruth and your journey navigating this cruel disease together over the past couple of years I have been on this forum. My thoughts are often with you both.
Hi bichonbear1
That’s such a lovely post and your respect for your father is understandable. Definitely as everyone says treasure every moment you have with her.
Going through a pretty similar situation here myself. Mum with PSP. Dad as hero.
Thank you for your reply. It’s a cruel journey we have to navigate. Thinking of you.
My Dad
A newcomer - Mum with PSP
Lost my Dad 
mum was told august this year she has psp
Mum fell.
