My lovely Eddie died peacefully in the early hours of Christmas Day. We knew he was getting weaker and when pneumonia was disgnosed he went onto the Liverpool Pathway but actually needed very little diamorphine, and none in the last 36 hours. His daughter and I spent his last four days at his side which was a very special time. I hope he could hear the chatting, the music, the Christmas telly and the laughter.
He was diagnosed with PSP in October 2010 but I believe it started in 2005. He was 69.
Wishing you all a safe 2013.
Take care
SheilaN
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SheilaN
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Thanks Jill. And by the way I was really pleased for you that you got the all clear from the doc. You are going through enough without that as an added bonus!!!!
I was so sorry to read your news about Eddie. It's difficult to know what to say when we all know what you've been through and perhaps are going through ourselves. My thoughts are with you at this sad time.
I am so sorry to hear about Eddie's death. It must be such a comfort to you to know that you and his daughter were with him those last four days. I pray that this and memories of happier times will sustain you at this difficult time.
I am so sorry to read your sad news. Mum passed away on 1 December and I miss her more everyday. Take comfort in the fact that now there is no more pain or suffering. Many hugs and prayers to you.
Thank you, your thoughts are very welcome. And yes, it is a relief that he is at peace, and no longer looking at me with such pleading and desperation in his eyes.
I can only add to your friends comments, we all feel for you and the family, Eddie has found his peace, and you all made his last days special, Our thoughts are with you.
Such sad news. Please accept our sincere condolences. You can only try to take comfort from the fact that Eddie is now at peace and free of his suffering. Love and best wishes to you and your family and friends.
I am so sorry to hear about Eddie. He is away from the terrible condition now and will be at peace. Your last day with him will be something you will remember not just for his passing but that you and his daughter were there with him with the normal sounds of family around him. Take care of yourself now.
So sorry to hear your news. There is never a good time to lose a loved one but, somehow, it always seems worse at this time of year! I send much love to you and your family
Shelia, We all greive on this site and other PSP sites when we hear of the loss of a loved one. I'm sure there is a sense of relief and peace that he is in a better place and not in the torment that is PSP. Take care of yourself in the days ahead. Lean on your friends and family. You were strong for him, now be stronger for yourself.
Jimbo, thank you for your thoughts, I really appreciate them. It is a huge relief that Eddie has at last found peace. Seeing him suffer the helplessness of his situation was heartbreaking.
I'm so sorry to hear about Eddie. As others have said Eddie is now free of psp, but it is a very hard time for you and his daughter, especially at Christmas. My sincere condolences to you both. Take care.
I'm sure that your Eddie felt so loved and supported to have such a caring family. Sending all our love and condolences to you and yours. My sister, 63yo was officially diagnosed with PSP just before Thanksgiving after the usual misdiagnoses for 3 years. I'm trying to appreciate every moment that we have together as we face this monster. Since we do feel that we have so much to be grateful for such as friends and family , good insurance, at least one caring physician , a roof over our heads , my husband and I being able to care for A., I try to stay focused on the pluses since we can only treat some of the symptoms but tragically not the cause of them yet! All of us here on L.I., NY who are aware of your and Eddie's struggle send you all our blessings and wish that we could have been there to help you and Eddie. I know that it was a heroic effort . Peace and wishes for healing, memories of wonderful times with Eddie , and happiness in the New Year.
Elise I really appreciate you, and all our friends on this site, taking the time to send your condolences and sharing your thoughts. You seem to have the reality of this terrible situation in some kind of comfortable perspective and that will always help you through.
I hope that you and yours will all be safe and happy in 2013
Thank you SheilaN for the comment about me sounding strong on the blog. This at times is far from how I feel on occasions. It is this site that helps me to stay positive. I just know we have a long struggle ahead of us, but you know the whole sad journey.
Stay strong at this time
Peter3
SheilaN, I am so sorry for the loss of your dear Eddie. As everyone has said he is, indeed, at peace now. Much love to you and your family.
So sorry to hear of the loss of Eddie i know what you are going through my darling husband passed away on the 14th he had cbd and was 63 years old we know that they are at peace look after yourself
Good morning hicval, thank you for your comments.If I sound at peace it is because I lost the real Eddie a long time ago and have been grieving for him ever since.Now that he has actually gone I know he's not suffering and that brings me peace.
I think that in awful times we find the strength and resilience we need.Very difficult but worth it for our loved ones.
Dear Sheila, sorry to hear the news, hope you and your daughter can forget the bad times and only remember the good times together. i know what you mean about your loss? time to look after yourselves now, keep his love in your hearts and you will both be fine. thinking of you both , love xoxo
Dear Sheila, sorry about you tell us here...im sure it would be hard for you and yours too, my father was diagnosed past year 2012, its very hard to me accept that one day he will die but i have to be stronger to don´t get down ( excuse my english im from spain) im sure that now you and him are in peace, maybe it was a hard way that share together but let me be proud of you for be strong and take care of him, my situation its very sad, im 37 years old and i have to share cares between my father and my two childs, i have no help of nobody here cause there are no fundations but only a medical information when you visit to doctor, i dont know how many time my father will be whit me, he is in phase when does.t walk by himself, can eat normaly and he speak bad....could you tell me if this phase to the end is nearly? send you a hug from spain
My goodness Marusela, you are having such a difficult time and without any help or support. Although there are four defined stages of PSP it would seem that no sufferer ever fits neatly into any stage compared to other sufferers. Eddie lost his mobility over a year ago but could still swallow to the end. His speech had gone but he never became aggressive, his eyes were closed for the last few days but they did not stare up as others do. So it is very difficult for me to say at which stage your father is. If you search PSP or PSP Association on the internet (and click for a translation) you will probably find a lot of information to help you. The Association might be able to put you in touch with other PSP sufferes/carers in Spain. I hope so.
thank for your word, i will try to get information i whish you peace and be in calm yourself, happy new year thank for help me sharing almost few information that for me its the bigger in this very moment. THANK U HUGS
I am so glad Eddie had a peaceful time at the end and that you have found peace. We all on here understand the mixed emotions at a time like this. PSP makes us feel so helpless and it is a long grieving process. Nevertheless, I am so sorry for your loss.
Thank you Cate. I have found a lot of comfort from knowing that we were and I am not alone on this uphill struggle.
You know throughout the months since I joined this site I often felt that were behind everyone, or on the sidelines of their journey, watching from a distance, but probably having an easier time than many. But at the end I knew exactly how others had struggled and still are. PSP is very cruel.
hi sheila,very sad to hear about eddie,im sure he would of hear you and your daughter as they say the hearing the last to go,psp is a very cruel disease and sa disease no1 should have to suffer from.both my parents had psp my dad passed away nearly 4 yrs ago and my poor mom in the final stages so i no how hard your journey has been my eddie rest in peace and i hope you and your daughter find the courage and strenght to get through your s adness regards wendy from birmingham x
Thank you Wendy for taking the time to share your thoughts. I cannot believe that one family can suffer so much as to have a husband and wife/mom and dad both suffer from PSP. How cruel. You must be a very strong person to go through it twice. I hope you can find some comfort from knowing that there are a lot of us out there who know and feel what you are going through. And we send our love to you and your mom and family.
Hi sheila,thanks 4 ur reply ive gotta be honest i dnt no were i get the strength from,its just a case of having no choice.the last two days have been very hard as my mom struggling to breathe and cant cough,and she sounds extremley croaky,spoke with the nurse today she said they are trying their best with mom and hopefully this doesnt turn into pnuemonia or she aspirates.as her food and drink going into her lungs instead of her stomach.as you no sheila this is very hard to watch and sometimes feel it would be kinder for mom if they could just give her a pill and end this exsitence for her as its not a life anymore.sorry if my comments upset anyone i love my mom dearly but cant bear watching her go through this any longer xx
I think many of us on this site will understand your wish for a pill. It is heartbreaking watching someone you love suffering without being be able to do anything for them. It makes us feel so helpless. It's because you love your mom so much that you want her misery be over. I wanted the same for Eddie. And that's why we chose the Liverpool Pathway at the end;to have prolonged things for him would have been cruel. Is your mom in hospital or at home?
Hi Sheila I lost my wonderful husband on Christmas Eve. He was diagnosed with PSP five years ago but I believe his first symptoms started ten to fifteen years ago. He too died peacefully with favourite music playing and his family with him. I too am so glad he has found peace at last. No one who has not experienced this journey has any idea of what the sufferers and carers go through. Getting a diagnosis is a fight getting help with care, equipment etc another fight and finally getting continuing health care, a nightmare! Please everyone out there don't give up on CHC get your MP involved until you win! This disease should automatically qualify in the later stages.
Hi Gian. Thank you for taking the time to reply. I am so sorry about your husband. We didn't have the most festive Christmas ever did we? You're right, being affected by PSP has been the steepest learning curve I have ever been on. But I have to say that because of the area we are in here in Scotland we have had the most marvellous support from Social Services. Whatever we have needed was there very quickly. The only issue was CC but I embarked on that too late. Never mind.
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