PSP Association
5,710 members7,804 posts

IT’S OVER

Listening to Roy Orbison, The Four Seasons , Buddy Holly, Brass Band and Classical music on Thursday and Friday at the Nursing Home. Some of B’s favourites. He was enjoying them, we could tell .

On Friday, his breathing changed .

Towards tea-time, we were playing ,” The Holy City” with its “Jerusalem, Jerusalem, lift up your voice and sing”, chorus.

In the 70’s B used to go out for a pre lunch pint on Sundays with our then, neighbour. Before they went, he always used to sing it. When we moved, our neighbour’s wife used to say that she missed this rendition. She still does, although it happened over 40 years ago.

Despite having many visitors throughout the last four days, there was only myself and our three children with him.

As the music played, we noticed a change. We gathered around B telling him how much we loved him . He exhaled gently twice and then passed away.

It was fitting that we were alone with him and that a tune with such happy memories for us all was playing in the background.

B. never complained about his condition. He bore it bravely and with dignity. May God bless him and all who have suffered or are suffering with PSP. May God bless all who are caring for PSP patients.

Let us hope that a cure can be found soon.

Thank you, everyone on this site for your love and support. I may be back in a while, when I have dealt with all that needs to be done after someone who is greatly loved, dies. X

61 Replies
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So sorry for your loss. God bless and look after yourself❤💔

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Hi robbo1

Sorry hear your sad news but it sounds like b was having a grand time before passing

Glad that you and your family were all together too

Please take care of yourself and love and hugs sent your way

Sue x

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So sorry for your loss but glad it was a happy ending. I know the comfort that has brought me.

You have fought a brave fight.

Big hug from Jean xx

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So poignant and a good peaceful end.

B could not have had better care than you fought to provide. Never, please, forget that.

To live a life where you are loved to the end is a wonderful thing.

I'm sorry for this great loss Robbo... My heart goes out to you and yours.

Warmly, and in sadness

Kevin

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Sending you a big hug Kevin. I know life is tough at present for you and Liz. X

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Thanks Robbo

Hugs to you too.

xx

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I’m so sorry and am sending my most sincerest condolences Robbo.

I’m pleased that B’s passing was so peaceful.

Please darling take time now to grieve and try to be kind to yourself.

Hugest hugs x

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Satt, I know I have to slow down, but its difficult after years of focussing on one thing that needed constant attention,- PSP.

If it had one saving grace, it was that PSP made me know that I loved my husband unconditionally and more than I could ever imagine. I knew he was stoic and full of humour but these gifts never left him.

PSP showed me that he was a more amazing person than I had ever imagined when we married. almost 50 years ago. X

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Thanks for that insight! I am still grieving after 6months and still learning from all the precious folks on this site!

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I am so very sorry for your loss! I am thinking that our husbands would have been great friends! My Bill suffered without complaint also. He was quiet and accepting. It was like he knew........ I think Psp does that to some. But also as he has been gone I look at his picture every night and grieve that I did not realize what a wonderful man he was. I realize now that He .truly loved Me unconditionally and chose to fight and suffer as long as he did for me as he knew I would be lonely. I wish I could have taken some of that suffering onto my back to show him how much I loved Him! I think from your posts that you feel the same but those thoughts are good as they help us to get though our loss. It will ease a bit soon Robbo but not go away but B will help you now. His suffering is over. His dignity preserved and your love intact. You did great! He made it thru and and can now truly watch over you. Be open to him. A gust of wind in your hair. A bird in a close by tree. A squirrel in the yard. Smile when you realize it is him!! Let the tears flow now tho. It is ok. They will ease up in a bit. You will feel his hand on your shoulder.........

God bless

Sue.

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Thank you Sue, I'll try to remember what you said. Its very comforting. X

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Sounds like it was very peaceful. You have my deepest condolences.

Ron

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Thank you Ron X

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So sorry Robbo. Thinking of you and hope you find comfort knowing B is now at peace and PSP free.

Sending you a big hug.

❤️ XxxX

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Nanna B, you have been there and got the T-shirt. Thank you for your advice and support over these crazy, distressing years. X

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Robbo so sorry to hear off your loss, he went peacefully , may he rest in peace away from this evil illness, sending you and your children a big hug. Yvonne xxxx

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Oh Yvonne, PSP Hell on earth! I'm glad B is out of it, but its legacy lives on. Thank you for your support. X

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So sorry to hear of your loss, Robbo. Sounds like B was very relaxed and haply at the end, thanks to you!

Big hugs to you and your family.

Jen xxx

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Thank you Jen x

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Sending you my sincere condolences for your loss and hope that you find comfort in B’s peaceful and loving passing. Ruth x

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Thank you JR x

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I'm so very sorry for your loss. May God give you comfort and peace in the days ahead.

Teresa

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Thank you Theresa, let's hope so. X

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Robbo what a lovely way to go. You can take great comfort from that. You have been amazing. May your beloved rest in peace.

Much love to you and your family.

Marie x

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Thank you all for your kind words. They are much appreciated.

I would not want B. to suffer more, but I miss sitting by his bed, holding his hand and just listening to music, Just the two of us side by side. The thought that I can never do that again is devastating at this moment in time. X

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Robbo1, I am so sorry to hear that your B has died.

It sounds like the perfect ending, listening to music that you all like, and a gentle passing.

You need now to take all the time that you need, not only to sort everything out, but also to start to look after yourself too. There are so many things that can wait right now, so only do what you have to.

Big hugs at what is such a difficult time.

Derek

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Thank you Derek. X

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What a blessing his peaceful passing is. I wish that for all those who currently have or will have this unforgiving disease.

God Bless you and yours!

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Thank you Boyce. God bless you too. X

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Sending love and hugs at this difficult time. Take comfort in the peaceful conclusion to a life filled with love right to the end

Tippy xx

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Thank you Tippyleaf. X ( Lovely name!)

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So sorry for your loss. Music can hold such great memories obviously a good one for B to pass and finally be free from this terrible disease.He went singing! Big hugs to you and your family

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Thank you Troubles. X

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Sorry to hear of you loss,it does sound like your B had a peaceful passing.

Take care and grief on your own terms

Hugs to you and your family

Dee

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DW thank you. Hugs always appreciated. X

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So sorry ♥️

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Thank you Elaine. X

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Just you and your 3 children was all your dear husband needed to give him comfort and love. God bless you all at this sad time.

Marie

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Thank you Marie. X

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I just you previous post before this one. You were pondering the difference it would make to B being at home as opposed to the nursing home. Well it sounds as though it could not have been better where he was. You had the expert backup if needed and as good a passing as you could wish for. I'm so glad it worked for you both.

Sending hugs along with the rest of your PSP family.

Rosemary Rx

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Thank you Rosemary. Yes, the Home were marvellous to B and to us. I'm still sad he couldn't be at home, but they dealt with the pain immediately and did all they could to keep B comfortable. I was with him every day with nothing much to do but to be his wife, his companion . We sat side by side for many an hour holding hands and listening to the radio, TV or a disc. I would read the news to him,being selective in my choice of course.. Lots of visitors came , some for a while, some for a quick visit. They didn't feel that they were intruding or causing extra work for me, because the Home carers would make them a drink if they needed one.

I'm glad you mentioned that post, because its easy to berate oneself about things that cannot be changed after the event and it reminded me of the good reasons as to why B. was in the Home.

Thankyou. X

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Thank you Rosemary. X

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I am so sorry that your husband has died. May he rest in peace, finally free from this evil disease. Take care, do everything in your time and as you want it to be.

Sending big hug and much love

Lots of love

Anne

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Thank you so much Anne. I need them at this time. At present, I don't seem able to stop crying....x

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You will stop crying, then wonder why you can't for a while! So let them out, if B was worth loving, then he is certainly worth shedding tear for,!!!

Lots of love

Anne

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That is certainly true. At that rate, I'll probably be crying for a long time yet! X

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So sorry Robbo.

xx

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Thank you NanBabs. X

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So very sorry for your loss. May you and your family find comfort and peace in the Word of the Lord xx

Tim

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Thank you Tim. There is consolation in that. X

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My deepest condolences to you and your family. I am so sorry for your loss.

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Connc, thank you for your kind words. X

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I add my condolences Robbo. Thank you for all your openness and sharing over these past years; it has created learning for us all.

Best wishes for your recovery 🌼

Anne G.

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Thank you Anne G. I am all over at present. Dealing with practicalities then weeping copiously. Thankfully I have support from my children at the moment or I don't know what state I'd be in. I keep getting quite angry at what poor B had to go through too although I can't do anything about it. Then I'm talking to him. Weird behaviour! I have been inundated with condolences and many complimentary comments about B. it upsets me as I know they are all true and I miss the lovely man that I have lost.

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I'm not at the same point yet, but from the wonderful members who are "survivors" here, I'm learning about the final grief...and nothing of what you say sounds weird! It sounds like so many others who have shared. Nothing you feel is wrong! Keep sharing as much as you like with us - as much as is helpful, and take care of yourself - not that you'll feel better for it now, but you'll be taking care of yourself for your future - your eventual return to the light.

Hugs your way :-) xxx

Anne G.

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Thank you Anne. visit to look at grave site and then to register B's death today. Sad, sad sad...

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Yes indeed...

Hugs for the end of the hard day xxx

AG

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Wishing your family strength and peace🥀

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Thank you Alicia. X

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Dear Robbo,

I just found this message , though a month old please forgive my delinquent goodbye to your husband. Your description of how he went off quietly with your family and good music is so poignant. And though we don't' want our loved ones to be gone , there is that certain relief the suffering is over. Now what....may I support you in getting grief counseling...maybe not right away but if you start feeling that sense of loss , not so much of your husband but of yourself , you may want someone to help you through it....You know you'll always have us....

Love and Peace,

Andrea

Peace I leave with , my peace I give to you: not as the world gives , give I to you. Let not your heart be troubled, nether let it be afraid . John 14:27

Surely He has borne our griefs, and carried our sorrows. Isaiah 53:4

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Thank you Andrea. We had readings from The Book of Wisdom 3: 1-6 9 and Corinthians 4: 13-5: 1 as readings with the Sermon on the Mount ( B's guide for living), as the main one. Very reassuring. X

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