Well after 6months in hospital, dad, last Friday, finally moved to his forever care home. It was top of our list so couldn’t believe he got a room (it did take a good 4 months on a waiting list). It was wonderful and the staff brilliant. Unfortunately he only got to spend 5 days there as yesterday he took a completely unexpected turn for the worse and passed away very quickly but completely peacefully. Whilst my head knows how lucky he is not to have been in any more pain or lingered on while dying, my heart is quite broken 💔. I’m so sad that CBD entered his life and took away the best part of 6 years. I’m especially sad we didn’t know that’s what he had for such a long time as we were often frustrated with his lack of wanting to do anything or go anywhere due to the apathy we didn’t know existed, nor could he explain. The last 6 months the frontal temporal brain involvement was also confronting and not something he would ever have envisioned for himself - who would!! I can’t quite believe he’s gone even though I’d been wishing for it for his sake for quite some time. He was a great man and a brilliant father. I won’t say more for now as I’m sure my mum will read this as she’s on this forum for support (although has never written anything) and I’m sure she is probably greetin’ !! Just to finish I will say how fitting the date was that he passed, 25th Jan, Robbie Burns day, dad always has been a very proud Scotsman ❤️🏴
Journeys end: Well after 6months in hospital... - PSP Association
Journeys end
I am so sorry for your loss and all that this dreadful condition did to your dad and his family. I'm sure there's relief for you and your mom, and also grief beyond belief. But then, you've been grieving for six years and this long "goodbye" is torture for everyone. I hope you and your mom find peace in happy memories and may they wrap around you in love and comfort.
Thanks COcaregiver, there is definitely relief for all of us but for dad the most. The reality of him being no longer with us though is heartbreaking, as it is for everyone on here. It’s the truly sad part of this forum knowing there is no light at the end of the tunnel for anyone in terms of getting better. The light is only death that they are no longer suffering - it’s a pretty shitty light really!!
I really hope your husband’s journey is not a long one for you, your family, but especially for him. Take care and thanks again x
so sorry to hear of your loss it’s the most awful disease I’ve ever come across I lost my husband to PSP 7 weeks ago after losing a bit of him every day for the last 10 years
I am sorry I have no words to make you feel better except take comfort in knowing that you were there for him always
we now how to face our life without them but hopefully you will get through day by day try to Remember the good times and think of him being well now as I feel they are in a better place and will always be with us
Hugs to you and your family xx
Thank you Dance1955, I’m also sorry for your loss😢! This forum is so good but so sad. We all know the inevitable and wonder when and how the demise of our loved ones will happen. I think most, including myself wish it for them so they are free from the torture. The reality of it happening is just heartbreaking though. Big hugs to you and your family too x
So sorry to hear of your father's sudden turn and loss!
"O ye whose cheek the tear of pity stains,
Draw near with pious rev'rence and attend!" --some Robbie Burns in honor of him!
-Lost
Thanks LostinHeadSpace,
Here lie the loving Husband's dear remains,
The tender Father, and the gen'rous Friend.
❤️
So sorry for your sad loss. I’m struggling with these emotions, wishing for mum to be free of this horrible condition, but the thought of her no longer being here is too much to bear. Sending love to you and your family.
Dear Willowden, it really is a horrible position to be in. For the last 6months, since dads CBD took a nose dive, he has suffered immeasurably. Each day we would wish for it to be over for him. Now that it has happened there is huge relief but with it such an enormous heartache. Heartache that he’s no longer with us, and heartache for the lost years and months to this hideous illness.
Take care and I hope for you, your family and your mum that her journey with this illness is a short one 😢.
I'm a Scot myself, on Burns night I celebrated with my wife and our friend who is also a Scot and Burns night is his birthday; in the future there will now always be another Scot on my mind on Burns night.Hugs
Sending love and hugs to both you and your mum. Xx
Thanks Fairygirl13 ❤️
Love and peace to you and your family during this sad time. You are in my thoughts and prayers.
So sorry for your loss. Hoping that the release for your beloved dad and all those who love him will truly become a comfort to you all. Sending a big hug, Purrlie
My condolesences. Dad is at peace now.
Yes he is, thanks OllieFisher1 ❤️
I am so sorry to hear about your dad, my thoughts are with you, your mum and your family. We were talking on this forum about 2 months ago about my mum and your dad. I remember our situation being quite similar in parts. CBD is such a cruel and nasty disease, we want our parents with us but equally painful to see them suffer the cruelty of it all. May your dad rest in peace. Take care x
Hi Bichonbear 1,
How is your mum getting on? Is she still at home and is she still managing to eat?
Thanks for your condolences and thoughts. I head back to Scotland tonight to be with the family and send dad off ❤️.
Dad kept losing weight and was down to 53.5kg which wasn’t sustainable at 5ft 9ins. In the end that’s what took him. Fortunately for us he was still eating. The night before he passed he’d had all his dinner, a milkshake, an ensure drink and water. In the morning he’d had his breakfast and a glass of orange juice then he just went down hill. He passed only a few hours later. And not dramatically, he just went unconscious and took his last breath with my mum and brother by his side. We can’t believe how lucky we are as we know that it’s not the way for many patients with CBD/PSP to pass. So for that we are thankful. He was still even able to walk (all be it unsteady/shuffling/slow), and communicate somewhat. I know each and every loved ones conditions are different and their passing will also not be the same, but I hope when the time comes for you mum to leave it will be as peaceful as dads was. It’s been a little light for us for what’s been a dark and awful tunnel.
Thanks again for your thoughts ❤️
Cat
My thoughts will be with you over the next couple of days ❤️ Mum is eating, appetite is hit and miss but is having 3 small meals a day with an endure drink. Mum is drinking well too. We have to do it all for mum as she has no mobility at all. There is no pleasure in eating for mum now, it’s more of a motion I think which we have to encourage. Mum has lost so much weight, is not gaining any, it’s upsetting to see. We can’t weigh mum due to no mobility. Cognition is not great but we are able to have basic random conversations. Luckily she can recognise and acknowledge close family and friends. Mum is at home and we have carers come to support with personal care, mum has double incontinence too. We have a scare every few weeks with UTIs, the last one was Saturday just gone - mum becomes unresponsive and it’s scary but she keeps bouncing back, a real fighter. I wish you and your family all the very best, have a great celebration of your dads life x
Gosh definitely a fighter and so are you for looking after her with her needs, that is not easy!!
We will certainly be celebrating dads life and trying to forget the CBD part. I think some of his carers are coming which will be nice for them to hear and see what he was really like. It will be especially nice to see family and old friends and talk about the good old days 🥰.
Take care for now and keep strong 😊
May God give you strength to recover from this loss. Yes, if it has to end, it is better early than late as the emotional pain is just too much. As also you mention, it was quick and peaceful - that is good. My mom passed from CBD in quite the similar manner - in about 1 hour, she was gone!
We are who we are just because of our parents. So let's thank God to have given us the opportunity to serve them back just when they needed us the most...
Hello Catski78, as promised a toast was raised on Burns night to Cliff and all that have been affected by PSP and CBD. 🫂
Dear Zerachiel thank you so much for this, I’m shedding a tear for you honouring dad and to all those affected by CBD and PSP.
The first year has passed and in that time I’ve known a child to have died and a young mum of 2 children (not to CBD or PSP) but it does give me some perspective on dad’s passing. He had the most wonderful life and got to live longer than many other people. With time it’s getting easier to forget the last 6 months of his life which were truly horrendous, and can now focus on of the good parts that are remembered fondly. We too raised a glass in his honour, for all those affected by CBD/PSP, and to the Bard himsel - for Auld Lang Syne x
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