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
Written by
Robbo1
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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
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.........
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
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
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.
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
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.
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.
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.
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.
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.
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
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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xxx
The struggle is over, the fight was difficult the warrior strong.
Its over
My husband and friend has passed
CHCRears it’s ugly head again
