Where have you gone
Behind those eyes that embraced life.
You are slipping into another world
One where I cannot follow.
The threads that have joined us
Slowly broken one by one .
Soon you will be my memories-
But not I to you
That 's the sadness of it.
Oh Georgepa, those few words say everything that we are all feeling now, the sadness and unfairness, it's so sad 😥 xx
So sad Georgepa but even sadder to think my darling still remembers everything but can't verbalise his memories. At the moment, if I ask him if he remembers a particular thing, his thumb will go up. If his thumb can no longer move, will his memory still be there? What is worse, to have your memories but locked in or to forget everything. Too sad to think about.
Goodnight Georgepa and V. I hope we all sleep well.
X
So true NannaB, where are they? Are we still somewhere in their world. Are they still with happy memories, or is apathy their only 'love' now.
Whether it be our own form of denial or comfort or whatever....we must continue to believe that they continue to love us.....
Goodnight Georgepa I hope you have to a brighter tomorrow than was your seemingly blue day today.
Goodnight NannaB thumbs up to you my friend.
AVB
This is just so devastating for everyone of us. So sad.
So sad but unfortunately so true 
Beautifully sad. Maybe one day, you should collect all your stories, pictures and poems into one book with proceeds to PSP research... it would be a wonderful tribute and lasting legacy.
Sending you and all other PSP suffers a big hug and a wish for a cure one day. xxx
Georgepa So true and so sad. God help us all xxx
Thank you, Georgepa. In tears after reading your beautiful poem. This slow, remorseless chipping away. I think we can't bear it but we have to.
Jean x
So sorry - didn't mean to make you cry.
George x
Tears are never far away. The gradual loss on so many levels is so painful. Chris is at an earlier stage on the journey, struggling to make himself understood. Your words help me to be more appreciative of what he can manage. What is unbearable is knowing that the brain is working hard but trapped. Its a slow journey.
Best wishes to you both.
love, Jean x
Beautiful words and oh so true
Well and poetically summarised the cruelty of PSP, locking in the patient and cutting off the carer.
Thanks
George so sad, what this horrible illness does xxxx
Such touching words that express this devastating condition. I'm going to print this so that I can read it over and over. Xxx
Dear Georgepa
Please don’t look upon those ties as broken but rather as being there, although no longer accessible to both parties. A telephone system where the outgoing messages are sent, received and understood but the reply system has failed or is failing bit by bit, a crackly line until no line at all. It didn’t occur to me until too late just how frustrating and frightening that must be for the PSP sufferer, who may well be as comprehending as formally they were but cannot respond by either speech, facial expression or body language.
I was fortunate, with a few notable exceptions, and with a lot of help, to look after Margaret’s physical needs to the end. With the benefit of hindsight I was woefully unappreciative of those other unexpressed, indeed inexpressible, needs that must have featured in her experience of this wretched disease.
I don’t wish to assume my lack of imagination, empathy or whatever, is a common failing, in fact the contributors to this site demonstrate just the opposite. I only wish the collective good sense and knowledgeable support of this community had been around when I needed it.
Please try to assume those ties are still there and your wife’s memories of your life together are not changed but locked in and are still being added to, even if here is no outward sign of it.
My heartfelt best wishes to you both. Jerry.
Well and sensitively said, Jerry, I appreciate your perspective, and that you still care to connect with those of us coming after. It's kind of you. Love and peace, Easterncedar
Thanks Jerry - I am sure you did a wonderful job looking after your wife . I have to admit I do find it difficult to assume those ties are still there . My wife seems to be going down the dementia / alzhiemers rout along with the other PSP symptoms - yes she can still recall things we used to do many years ago but even those seem to be slipping away and her cognitive confusion makes even knowing what day of the week it is difficult let alone what we did yesterday . Maybe its in there somewhere - I don't know . But I do appreciate your response .
George
beautiful ! as I see it life is a movie with all the entertainment linked to the couple ...now it,s like the show has ended and you are sitting alone in the theatre with no place to go,.Rollie
Oh Rollie, that is such a moving and sorrowful image. You have a tender and loving heart. I hope someday you will see some light in your life again, so your memories may bring you more joy than sadness. Love, Easterncedar
Hi my dear,I guess in my mind,regardless of what I said ,I always felt we would find a cure but looking down the road if PSP had never appeared,I would be looking for a cure for old age etc etc .Madeline was a social being and I a partial loner,,when I left home to join the airforce she never missed a day without writing to me...that for an 18 year old girl who had been a prom queen and was always hounded by prospective suitors looking back says something.! On a flight 48 years ago ( I remember the time as Madeline was expecting our first child )I was setting with this gentlemen who during our discussion he brought up the fact he could never forget this girl who had turned him down,asking her name because he came from my area ,he said Madeline Murphy ,I said you will get to see her when we land as she is my wife,who would have thought ! After Madeline passed I found out he had returned to the area and felt I should drop in to see him,he was surprised but very happy that I had come to visit him,he said he never married as I had the person he could never forget,I must admit I had a great life ,now each day that passes I am closer to finding her again,!love to you both,try to stay strong,it,s very hard to see the sunshine during a tornado but as caregivers we are really a handful of strong individuals ,loads of hugs,thank-you for your thoughts,Rollie
Oh, Rollie. Sorry it has taken me so long to reply. I loved this reminiscence, and I'm glad you felt like sharing it. Your Madeline must have been a wonderful woman - and she knew a good man when she saw one. I think you were very lucky to find one another; such things are rarer than the fairy tales would have us believe. I am sorry for the man who lost out. That's devotion, too.
How are you doing today? Do you have much to do to get your home ready for winter? The lovely fall weather we have been having is making me a bit complacent. There are so many things I will regret having left undone, once the snow flies, but yesterday was sweet and warm, and we went to a lake nearby and i went swimming and we watched the sunset, holding hands. Winter will have to take care of itself.
Love, Easterncedar
Easterncedar..you are very fortunate to hold hands,.we did that even on the last night, I always look at Madeline,s photo,poster size, that I had finished many years ago which she always asked why I had that done , she always felt that she was only a very plain girl ,to me she was the girl that moved all others out of the picture !!No I don,t do much as we had the old homestead re-done to stand winter,as for you people, our weather is still warm ,except early a.m. when it gets around 40 degrees ,take care of yourself and regardless of this part of the voyage being extra rough you will one day be as you were ,even science is saying that the energy that runs our bodies simply moves on ,that I choose to accept,otherwise I could never have made it to here,loads of love to you both,Rollie
Thanks, Rollie. I heard someone say once that for a eulogy, if you want comfort, you should have a physicist. Nothing is destroyed, just changed. I hang onto that, too.
Hang on to what makes things a little less painful,love Rollie
So sad, so true! Sending a hug.x
Sad words, but so true brought tears to my eyes remembering my lovely mum and miss so much. Sending hugs to everyone xx
Early on my husband was frustrated with me and managed to say,"You think this is who I am". Floored me. Beautiful poem.
oh, ouch. ouch. That is the problem. I say to him, "I seem to be nagging you, but I know you'd do it if you could, it's the disease I'm angry at." Still, I know it is my sweetheart who is feeling my negative emotions, and i am so sad and ashamed when I lose my temper at him.
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