the time has come - 3 years from diagnosis - PSP Association

PSP Association
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the time has come - 3 years from diagnosis


It has taken me 2 weeks to be able to tell the final chapter. On the Saturday it was stormy and the palliative care helps came to give Ch a shower. Then the afternoon was visitors. We has not seen them for a long time and Ch wanted to be in the wheelchair to see them. The conversation was full of memories of the times we had had with them but Ch just sobbed . I held his hand and gently tried to calm him. Eventually the visitors went . Next morning the shower team came again and I suggested that maybe they could put him over the toilet. As that was successful they gave him a shower and got him back into bed. We had been using a hoist for transfer. Once in bed he asked them to get me. I was just in the garden. I took one look at his labored breathing and somehow knew what was happening. I sent for one daughter, called the other (20 min away) and called the Registered nurse. I held his hand, stroked his head and told him it was okay. Our daughter held his other hand. He breathed more slowly and he passed away. His skin changed colour and the Nurse agreed that he was gone. It was a quick and peaceful end. It was not pneumonia that killed him it was PSP. Just over 3 years from the diagnosis. He died at home and not alone which is what he wanted,

The time of caring was not easy and without the support from the two caring teams who were there for us we may not have managed.

Now to get through the next stage. You know, the thing about death is that it is so final.

Thank you all for being here . You helped me to not feel so alone.

.... val

62 Replies

Sending gentle hugs to you & your family... Granni B

(Your hubby's passing sounds a lot like my mom's except she was in a nursing home. You did him proud.)

So sorry to hear.

Glad you got to be there when he died. I missed out on that and will always regret it.

JantheNana in reply to Jeff166

I am in that same boat with you Jeff. My wish is that it could have been different and at home. Janet

crab2093 in reply to Jeff166

We were lucky to have the support from the Palliative care team. He went more quickly than we all thought. ...v

So sorry to here this. May your husband rest in peace, finally free from PSP.

Sending big hug and much love

Lots of love


crab2093 in reply to Heady

Thanks for your support Heady.

So sorry for your loss, but relieved for you all that it was such a peaceful passing.

Take your time and look after yourself now as you learn to live this new life

Love Tippy xxx

crab2093 in reply to Tippyleaf

I did not realise that the "missing" would be so hard. I know I will get though it. Just taking one day at a time. .. v

Sorry for your loss ,, glad you were able to look after him in your own home , much love to you and well done on a great job careing for him at home..Brenda xxx

crab2093 in reply to Brenive

Thanks Brenda, It was not easy for a while there but luckily I asked for help from the right people at the right time. From there on it was simply "hanging in there" and being thankful for the privilege. ... v.

So sorry for your loss, Val. You were there for him.

Life will pass slowly for a while. Take that time to grieve and remember the happy times. You should feel proud of yourself. You did well!

Big hug

Jen xxx

crab2093 in reply to honjen43

Everyone does the best they can. The way each one of us manages is the right way for us. It is a difficult journey and there is no turning back. Thanks for you thoughts. ... v

honjen43 in reply to crab2093

Another big hug!


A big hug.


all hugs received gratefully. :)

So sorry for your loss!!

May He Rest In Peace!!

crab2093 in reply to Sam_S


Sending you my heartfelt love and hope you can heal from the scar PSP leaves on us all. Finally your beloved man is free from it. X

crab2093 in reply to Denisejoy1

Yes, it can be a rough ride... Thanks ... v

Firstly I like to say how sorry I am that you have lost your husband. To me it sounds like your husband had a good and peaceful death after facing all of the horrors of this terrible disease. I think we would all wish for a death like this, peaceful,pain free and with loving support from the ones we love. My husband also passed away in a similar manor and it’s of great comfort to me to have been able to be with him as he quietly slipped away,

Sending love

Kate xxx

crab2093 in reply to Katiebow

Yes, but it is not for everyone. We all do the best we can. Thanks

I’m so sorry for you and your family, I hope that you are able to take time for yourself and that you have support. Thank you for sharing your experience of how PSP has affected your lives xx

crab2093 in reply to Hdee

Thankyou. Yes it is one day at a time ... v

Dear Val

thank you for sharing. My heart goes out to you but please take solace from the fact Ch is now at peace.

Losing someone is difficult enough but even more so under current circumstances.

Sending love and hugs

Anne x

Certainly we were lockdown before Covid 19. So we had plenty of handwash and sanitizer in place. Plenty of workers coming in towards the end. I was not alone. Take care... v

So sorry for your loss.

crab2093 in reply to Gemmadog

I appreciate your thoughts

I’m so very sorry for your loss. I pray that my husband’s passing is as peaceful, and that I have your strength and courage.

crab2093 in reply to Inparadise

I could not have managed alone. My family was not available so I needed to ask for the services of home help and palliative care. They worked as two teams and were very supportive of us all. ... v

So sorry for you and your your husband is now free from this horrible disease. Take care. xx

crab2093 in reply to Jazzercise

Thank you

Thankyou for sharing that .... my husband is going through his fourth bout of pneumonia ,, is frightened of dying , is in his seventh year of PSP and has a poor quality of life . If I could hope for one thing it would be that he could die as peacefully as your husband did . Take care and much love

We did not know that Ch had PSP until about the 4th or 5th year although we knew something was wrong. We were lucky that his bones were strong - many falls and no breaks-. He had no pneumonia and was very health conscious . all he had was a deteriorating body and he fought it for a couple of years. Even if the final weeks and months are difficult know that it will end and the end is so final. ... v

Sending love and hugs. Glad you were able to keep your beloved husband at home & were with him. So sorry for your loss

crab2093 in reply to Toddet

Yes that was important to us. thanks ... v

So very sorry for your loss Val. Hugs and prayers.


crab2093 in reply to daddyt

Thank you

My sincere condolences to you and your family on your loss. Be proud of your efforts for your husband. He felt your love throughout ❤️. Grieve in your own way and time. May he forever Rest In Peace. 🙏

crab2093 in reply to georgeg25

Thank you. Take care. ... v

So sorry for your loss. Sending warm hugs!

crab2093 in reply to Sebuly14

Thanks . Hugs received. ... v

Bless you and thank you for your lovely account. I’ll keep you in my prayers. Sad days ahead but we are here for you.


crab2093 in reply to Cuttercat

Yes , it continues to be sad. a piece of me will always be a bit sad. I expect that time will help,

Sorry for your loss,but what a beautiful ending to all your struggles you ve been through. We too, wonder what we will have to go through before it's all done,but I guess we'll take one day at a time and enjoy what we can. Bless you!!

crab2093 in reply to GoGreen

Make the most of your time even when it is one sided. Expect nothing from PSP. We still sat out side near the plant nursery most evenings before dinner. Me with a wine and he had a glass of cordial. He only smiled when others came to visit. But he knew I was there. That usually helped him to be at peace with himself.

Thank you for being with us during such devastating times. I can understand the 2 week process of summoning up the energy and courage to write about CH's last chapter. I'm so sorry for your loss. Sending huge hugs!

XOXO ❤️ SewBears 💐💐💐

crab2093 in reply to SewBears

I have enjoyed your thoughts and hugs. ..v

Very sorry for your lost.

Big hug.

Take care


crab2093 in reply to wear1947


Sorry for your loss. I am glad you were able to be with him and comfort him. I know it’s still hard. I’m not looking forward to that time with my husband. Like you say it’s final. Hugs and prayers for you and your family.

crab2093 in reply to Y2U4

Peace to you

Dear Val...I am so sad for you but it sounds like it was a peaceful passing and that's all we can hope for..Now the journey ahead...Hopefully your family will be a good support for you..I lost my husband suddenly last year (stroke) and although the healing process is does get easier...take care sending hugs ...Liz

crab2093 in reply to Skye04

Family and friends are a great support. I am lucky I guess.

I Iam so sorry for your loss But I am glad for you that it was home and it was a peaceful End. Sending hugs and prayers your way. I know this must be an incredibly hard time for you but take comfort in the fact that you provided your husband with the end that he wanted and that you were there with him and your daughters. He’s free from the spread of disease. May now rest in peace.

crab2093 in reply to Dickwin

Very true

So sad for you but so happy that you were with him At home he would have been so comfortable with that hugs 💕💕💕xx

crab2093 in reply to Dance1955

Yes. He wanted some there all the time towards the end.

I am so very sorry for your loss. Sending prayers and light for your healing.

crab2093 in reply to Baytalon

Thanks. I am not so good with prayers.

My deepest condolences to you in this final loss of your beloved man, Val. 💔 The end sounds beautiful though still heartbreaking.

I send you hugs for strength and patience for the long slow journey of grief. Be kind to yourself. There are many of us here who know what you’re going through ❤️❤️❤️


I am grateful for your caring wise words. ... v

So sorry for your loss. I’m so glad he was exactly where he wanted to be when he passed. What a wonderful and supportive family you have been. Sending all my love and best wishes x

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