It's been just over a week since my husband Tom's struggle finally ended. He yearned to be released, but we, his family, did not want to let go. Prolonging his misery would have been for us, not for him.
I'd heard over and over about the difficult death of PSP sufferers. I must have misunderstood. It was not the passing itself - the transition as my husband called it - but the few weeks preceding death that are devastating. The agony of the patient, his unfulfilled desire to communicate one last time, the fear of what may lie beyond, the questions the family must answer over and over about legalities and end of life procedures - DNR codes, antibiotics or not - the fatigue of the long vigils, the panic at having an early morning telephone call. I could go on and on. The difficult aspect for us was his gasping for breath. We wanted to breath for him.
My husband's actual death was extremely peaceful and painless. I was next to his bed, Kindle in hand, but not reading, my mind wandering, perhaps dozing, when the door opened to my daughter and a nurse. They took one look at Tom and said that he was gone. I did not even realize when it had happened.
I've written this partly for my own therapy, but mainly because the actual death of a PSP sufferer was shrouded in mystery for me. Of course, every death is not the same, but by relating our experience, I hope, at least, to remove possible misunderstandings.
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BarbR
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Thank you for sharing this with us. I'm glad the end was peaceful for your husband and that you were with him when he went.
My deepest, most heartfelt condolences for your loss. I hope you and your daughter (and any other family/friends) can draw comfort from shared memories of happier times.
Thank you, Kathy, for your kind reply. I wasn't sure if this blog was appropriate, would be of interest to the community. Reading your response is reassuring.
After 46 years of marriage, we do have many happy memories. In some ways, the happiness we shared in those days makes these days more difficult. I know that these sentiments will pass in time, but for the moment...
Your blog was deeply appreciated by me as I watch this disease slowly deprive my husband of everything-- but his will to live. We have supported each other through 56 remarkable years of marriage, but now it is only up to me to see him through this. He can barely communicate his needs, is completely immobilized and so the frustration for him must be overwhelming at times. Reading what you wrote was a comfort, because I cannot help but wonder what will be, and if he will suffer. No one knows what you have endured better than one of us. Thank you for your very real words.
So brave of you to post your thoughts at such a difficult time and much appreciated. My sympathies are sent to you and your daughter and other relatives and freinds. Your husband is now at peace and you no longer have to watch his suffering. None of us wants to lose our loved ones to this dreadful illness and our only consolation must be that thoses afflicted by PSP will one day be at rest.
Thank you for sharing and as said by previous comments, you will draw comfort from the happy times.you shared.
My thoughts are with you and your daughter, I lost my darling Ken last October and he too was trying to say something to me - I could not understand what he was trying to say - I encouraged him to try to sleep and we would try again in the morning - he did not wake up again - but he did go peacefully and is out of pain now . Having memories of happy times does give comfort. God Bless. I know what you are going through.
Dear Barb...I feel for you & know exactly what you mean. My husband Frank passed very peacefully on 23 April. He hadn't spoken for about a week & even then it was only an odd word which was difficult to understand. I so desperately wanted him to tell me he loved me but that wasn't to be. One of the worst things for me is that I can't remember his voice...his " real " voice before it was affected by PSP. I do take comfort though from the fact that he didn't get Aspirational Pneumonia which would have been awful. Like you, I was dreading the end but Frank's was also peaceful which is all we can hope for. They are now in a far better place, free from all the indignities which this cruel disease bestowed upon them. Take care...love to you & your family & my heartfelt condolences. Love Hazel B xx
My dad, also Tom, passed away on New Years day, and our experience seems similar to yours - two weeks in hospital with pnuemonia, with lots of jargon, medication and having to make snap decisions without time to contemplate.
Like you,we would have done anything to keep him with us, but we truly believe at the end he was ready to go.
Being unable to comminicate was exceptionally hard. We totally understand the fatigue from hospital vigils and continual phone calls. Mum stayed at his bedside night and day and at the end, minutes into the new year ,she looked across at him and he had gone..no big drama ..just slipped away quietly and peacefully.
Like you we can only thank God he did not seem distressed at the end, and his suffering from this terrible disease is over.
Our thoughts and prayers are with you at this difficult time.
Hi Barb - I am so sorry for your loss. My thoughts and prayers are with you - it has been only 4 months since my father's passing - at times it seems so long ago and other times--- like it was yesterday. Grieving for me has come in waves -the first couple of weeks were the hardest. I felt lost and a loss of purpose. The care of my father consumed me entirely. This weekend has been especially hard for me - it's a holdiay weekend in the States but a holiday weekend that was always around family since my Dad's birthday is tomorrow. The first birthday without him and I miss him terribly. Just trying to be good to myself - -be good to yourself too!
Thank you for sharing how peaceful the end was. My parents have been married for 47 years and Dad is now in a nursing home. Just recently Mom was asked again to sign a DNR (she wouldn't even though he is bedridden and can't talk or see). When they asked Dad heard and motioned Mom and uttered one word that was clear (something we haven't heard in months) and that was Yes -- Mom asked you want me to sign it and explained to him what it meant and he said Yes again and then added "i love you & will miss you." Of course not that clear but better than anything he has said in months.
We worry about the end, so thank you for sharing. I hope Dad's passing which seems very close is as peaceful.
Barb and others: Thanks for sharing your experiences with those of us caregivers that are not far into this terrible journey of PSP consuming a lovedone.
I've heard that once a PEG (tube feeding) is in place it is VERY difficult if not impossible to have it removed so a lovedone can pass on without a long season of agony. I'm trying to figure out the progression of PSP so I can judge just how far along my dear wife is into the journey. Any help will be appreciated. Bless you for sharing and helping others like myself.
was just reading your post and felt i had to say something my husband was diagnoisedwith this terriable disease 2 years ago but it is rapid he is not able to do anything for himself cant walk and now his swallow is affected peg feed has been mentioned but he has said no its hard on myself and 4 children wondering if he is making the right decesion any input would be much appreciated
If you go for a peg make sure you can remove it later if you or patient wish. Be aware a peg may keep the patient alive but captive in their body. What were your loved ones wishes? These are, unfortunately, hard decisions. It's good to get input but the only right decision is the one you make.
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