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PSP Association
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Sad news

Dear All

My hubby died “unexpectedly “ on Friday. Can hardly believe that I am

writing those words doesn’t seem real. I clearly understood he had a life limiting illness but to die so suddenly-what a shock. He has never had a UTI, chest infection or fracture, no periods of hospitalisation. But as a doctor this is exactly the death he would have wanted except I wasn’t there.

He had a really challenging few days with increased night time/daytime agitation, sweating, more falls and rigidity but we have been through these periods before

His swallowing has deteriorated and we were working to maintain his weight. He was adamant he did not want a peg and would eat . He had couple of tricky choking episodes recently and sadly that is what happened.

R had spent a week in a care home before Easter and I had taken his DNR in with him -stupidly did not collect it -it has lived by our front door for the last 5 years - he was so adamant he did not want to be resuscitated. Carer feeding R lunch called 999 I was home within 10 mins and found him with paramedics in full flow..... They could only stop when senior paramedic reviewed his ADRT which was in his carers folder which stated no resuscitation under any circumstances.

I would hate anybody else to go through this scenario hence all of these details.

This site and the friendship and support made our PSP journey smoother your expertise helped me be a better carer. Thank you so much

Love Tippy

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Dear tippy I'm so sorry my thoughts and prayers are with with you and your family May your darling husband rest in peace he is free now sending you lots of love Jeanette xxx

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Oh tippy so sorry to hear this sad news my heart goes out to you lovely lady, PSP has taken another one. Tippy grieve in your own way, you did a wonderful job looking after your lovely husband, take time for yourself tippy really really feel sad for you. He is at peace now away from this horrible illness. Sending you a big hug. Yvonne xxxxx

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Dearest Tippy,

I am so sorry to hear your news. You have been a comfort and support to so many here and I know that there will be many wanting to come alongside you now.

I am sure, in time, the distress of not being there will fade and you will remember only the good times. I remember your kind and wise words over the past months and now it is time to draw support from those around you.

Friday was quite a day...my brother in law and another old friend also passed away, but heaven will be an even richer place with our loved ones there.

Praying for peace and strength for you, dear lady. Thank you for being part of my journey, too.

Juliet x

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Oh Tippy! What a shock! I am so sorry for your loss. He is now free of this terrible disease, and his suffering was not prolonged.

You will feel guilty and bereft, but don't be! You had to be out, and he was not alone.

Get your families together and mourn his loss - and remember him for the man worth remembering before his illness, and for the closeness it brought for you both.

Am thinking of you.

Kia kaha! Be strong!

Big hug

Jen XXX

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Darling Tippy,

I’m so very sad for you! So unexpected is such a shock!

All you can think is that your dear husband is now at peace and free of this despicable disease.

For you now, difficult times ahead, if you need ANY help with anything please let me know.

You have been so much support to me and many others here, my heart breaks for you!

Much love darling x ❤️

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Tippy, so sorry for your sudden loss 💔 My thoughts and prayers go out to you. Hugs, Kathy

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Dear Tippy , so sorry to hear that you had such a stressful time. I know you will feel numb after all the shock.

It's been a hard road for you and your husband.

I can only offer a big hug.

Love Jean xxxx

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So sorry to hear this Tippy, love and hugs to you and your family xxx

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Dear Tippy

I am so sorry

You are in my thoughts at this very sad time

Love Lynda xx

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Love and prayers. Ken & Doreen.

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Oh my god am so sorry how awful x

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Dear Tippy, my thoughts and prayers are with you. Your darling is now free but it must have been a shock. The next few weeks will be hard with all the arrangements to be made and things to sort out but I hope you will soon be able to enjoy life again and find a good life after PSP.

It’s good you have let folk know about the DNR. At the Hospice day care I had to take the DNR every week as the staff said even though they set it up, if paramedics were called they would still try to resuscitate if they didn’t have the piece of paper. From then on I kept it in the back of his wheelchair as that was always with him wherever he went.

Take care of yourself.

❤️XxxX

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I am so sorry to hear this news. You have my deepest condolences.

Ron

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Dearest Tippy

Sending you love, hugs and prayers at this sad time. What a terrible shock for you but take comfort in the fact that your darling husband is now free from the scourge that is PSP.

Be strong and take care of yourself

Anne x

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Such a shock. So sorry to hear you didn’t get to be there. Never any way to know how or what this disease will do. He is free of this disease now.

Now it is your time. After the shock wears off the grief settles in. Take all the time you need to go through it. Stick around here for support.

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I am so sorry to hear of your sudden loss, but glad to hear that this would have been your husband's choice. Thanks for the reminder about how important that one piece of paper is. My heart goes out to you.

Hugs,

Pat

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Oh Tippy, my darling, I am so sorry to hear this. May he rest in peace, finally free from this evil disease.

The shock must be enormous, but then it is, even if you know it’s about to happen. Sad that you weren’t there, but equally I suspect, he managed it that way. People have a habit of dying in their own way, perfectly choreographed. That may sound daft, but I have heard it told so many times and I know Steve did!

I also left Steve’s DNR form at the Nursing home. They wouldn’t attach him to a driver, so my daughter had to drive to the home at midnight on Christmas Eve!

Enjoy your bubble you are in at present. It helps with all the business side.

I know you read my comments, so I won’t bore you about the guilt that you must not allow to enter your life. Just take care of yourself Tippy, this bit is just as hard and extremely tiring. You thought you were tired before......

We are still here for you and will be as long as is needed. At the moment there is a huge group hug going on and you are directly in the middle. Hopefully, you will feel up to our London meeting, so we can do it properly.

Sending huge hug and much love

Lots of love

Anne

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So very sorry to hear this. What a shock for you!

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Dear Tippy. What a horrible shock to read your email today. I am so very very sorry. My love goes out to you with thanks for all the help and support that you have given me. I am glad the end was quick for him, which we all wish for our loved ones, but I know that it leaves one in a state of unbelieving limbo. I cannot help but think of that lovely song that was posted a few weeks ago - Donna Taggart. Jealous of the Angels. Big hugs AliBee xxx

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Oh Tippy, yet again I’m crying at news on this forum. I’m so sorry for you.

I really don’t know what to say, it sounds similar to my situation, that I knew what was coming but didn’t expect it when it happenned. I don’t think we ever do, even when we are prepared.

In a strange way I wonder if it’s another of those I’ll go when you’re not here to see me moments, I am sure y David and many others have willed it this way.

I hate this illness with every fibre of my being, I really do.

Please look after yourself, I hope if you feel up to it, I can say hi at the meet in June.

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Tippy only just seen your post I am so sorry. What a shock for you you have done such a marvellous job of looking after Rene. Just make sure you look after yourself in the days ahead. Hugs xx

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Dear Tippy,

I read your post and all of the replies and I’m trying to be strong for you and say something that hasn’t already been said. Even during your grief you’re still here helping us! I haven’t been carrying around hubby’s DNR but I am going to start doing that today. You’re an amazing person and I have often thought about the new stage that you find yourself in right now. I think I am in a constant state of shock, waiting for the shoe to drop. However, I know when the actual time comes that I will be numb and in denial and I hope that I will be able to come to this forum as you have done. Thank you!

Group hug ❤️

Xoxo and love from I SewBears

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Tippy, I can't even imagine the shock. So often John's symptoms paralleled you and R. Especially the impulsivity. Please do not take on the guilt of not being there at the end. I personally believe that the end is predetermined by a higher power. You were always there for him when he needed you here on earth. R's suffering is done. Your healing is just beginning. Send you a huge hug. Alice

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Dear Tippy,

I'm so very sorry for this huge loss in your life. 💔

We know it's coming, we want our loved ones freed, but it's still awful when it happens and we don't want to lose them ever .. ever...

Your hubby's passing sounds just like mine: I was expecting way more 'decline time' before the end. It was a horrible shock. Be prepared for that shock period to last a good while.

Be hugely patient with yourself now. This is a shockingly new state of life beginning.

...and as you know, there are lots of us widows and widowers here for you if you need us. ⭐️🕊❤️

Anne G.

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So so sorry for your loss xxx

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Oh Tippy my heart breaks for you. What a shock for you and even for those of us on this site who have known you a long time. Dear friend we are all here for you to help you through this next phase. It is very difficult but we are here always for you.

God Bless and may your husband now rest in peace free from suffering at last.

Hugs to you.

Marie x

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Dear Tippy, I'm so sorry for your sudden and unexpected loss. Take care of yourself and thanks for sharing. We have talked about drawing up a DNR but haven't got around to doing it, but we certainly will now. Love you, Nanny857 x

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Oh!Tippy, so sad but now he won’ have to suffer anymore. My thoughts are with you all,sending you a big hug! Jayne xx

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Tippy,

Deepest sympathy. Hope traumatic on you. Thinking of you!

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Oh Tippy so so sorry what an awful shock for you my friend big Hugs to you and your family and my deepest sympathy

💕💕💕💕💕

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I am so so sorry to hear this and what a dreadful shock for you. Even though we all know that there is no cure and it’s only a matter of time it is still a huge shock when it happens. Be kind to yourself and remember all the good times. Sending you lots of hugs love Sarahxx

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Sorry to hear such sad news xx

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So very sorry for your loss but he can now rest in peace x

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I'm so sorry to hear your sad news Tippy.

Finally your husband is at peace and 'whole' again. The next bit is hard too but he will be walking by your side every step of the way, just as you did for him.

Be good to yourself.

Lots of love and hugs

Sue x

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Dear Tippy,

Everyone has already said all I want to say, but I still wanted to let you know that you are in my thoughts and prayers. I particularly agree with Heady and her group hug. Julie.

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Dear Tippy

I am sorry to hear about this sudden loss of your husband.

I imagine you are feeling shock, disbelief amoung many other emotional reactions of grief.

Whatever you are feeling, please feel them and that they are a normal and natural response to loss. Everybody is unique and their relationship to the person that has died is also unique.

Sending you massive hugs x

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Very disturbing and sad news!

May GOD bless his soul rest in peace.

Brave man, I would say!

Good luck in future!

Regards

Salman-( Dunya news)

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Tippy

I am very sorry to hear this news. You have been a huge support to all on this forum.

Richard x

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Dear Tippy,

My heart goes out to you now you have lost your love so suddenly. He will be in peace and you will start remembering the good times you had together, I am sure.

Hope you will stay on this forum as you have the experience and I loved to read your posts and reactions on others.

I will burn a candle for him and send love and hugs to you. xxx

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so so sorry to here your news , but he is now free none of them would want to be living with this horrible disease , my husband deffinately would of hated it he loved playing football and running ,wed often pass someone running an he would say lucky bugger ,the only thing that helps me is the thoughts that he is once agsin running xx

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Am shocked at your news especially as we only met for the first time a few weeks ago. So very sorry to hear what has happened xxx

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So sorry for your sudden loss and thank you for a very timely reminder about the DNR which is so necessary but can be so difficult to discuss when sufferers don’t seem to be aware of the enormity of the condition. Hugs x

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Oh I am so sorry. The pain of loosing a parent to PSP has been awful - I cannot imagine how it must feel to lose your dear husband and especially to this wretched disease. Sending love, hugs and virtual strength to you and your family. Dawn x

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Dear Tippy,

So sorry to hear your news. It is always a shock when you lose someone so close - even when it is `expected`.

You are right, it doesn`t feel real - like it`s happening to someone else.

Hugs and thoughts are with you.

x

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So so sorry Tippy. What a shock for you. Thinking of you at this sad time and wishing you strength. You have given so many of us support on our journeys (just look at the number of heartfelt responses here) I hope that we are able to help you in some small way now.

Hugs xxx

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Hi Tippy my heart goes out to you.All us carers know the pain you are going through.May you get your life back and hopefully get all the help you need to ease your sorrow.

All my love,Acornater.

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Dear Tippy, I wish you could feel all the love we all feel for each other...... wish I was by your side just to support and help you through this! Take each day as it comes and try to dwell on on the positive things you now have. Surround yourself with pictures of good times .... Sending you tons of love and hugs. N

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I am so sorry for your loss and this will be a difficult time for you. But you have been there for him on this awful journey and now have to look back at all the happy times and hold on to those wonderful memories. Take time for you and look after yourself xx

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Dear Tippy. I'm so sorry. It is an awful shock for you. Too soon. Too sudden. How kind of you to think of others under the circumstances. You've reminded me to get the DNR form for my mother completed and posted. Thank you. Love and hugs, ec

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Sending my prayers and care through the ether. Knowing love never dies.

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I am saddened by your news and my thoughts and prayers are with you! I am approaching the 2 year mark of my husband’s passing. He went ,as yours did, unexpectedly.I really can not imagine which would be worse- the sudden,unexpected passing,or the weeks of palliative care that so many here on this forum have described. But in the end,we don’t get to choose do we? It is in God’s hands.

I know you feel numb and in disbelief. Try to rest and take care of yourself.Believe me,the good memories will soon overshadow all the pain and distress! ❤️ Janet

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I feel so terrible for you❤️

One minute at a time. 🙏🙏

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Oh sweet Tippyleaf. I’m so sorry. We are still here for you as this journey begins. It’s just as hard as the journey that has ended.

Love

Cuttercat

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So very sorry for your loss. Hold the memories of your dear husband close in your heart.

Kerry

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Hi.tippy sorry to hear your sad news. Love and hugs jo x remember your hubby is at peace now x

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Such a cruel, cruel disease. My heart goes out to you.❤️

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All my condolences. Sending you a big hug.

Dawn. xx

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My thoughts and prayers are with you....

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I am so sorry for all that you have been through..this next journey ahead will have it's challenges also but at least your hubby is at peace...Bless you

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A big hug Tippy.

Luis

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Oh dear I’m so sorry.

And thank you for Reminding us all of the importance of a DNR. The aides where my mom is frequently have no idea where this document (new staff don’t even realize she has one most of the time; they rarely follow procedures I’ve come to find).

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So sorry about your hubby, I know when you least expect it happens, psp is such a dreaded disease and he is at peace now, take care of your self, thinking of you. Nettie

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Oh dear Tippy, so so sad to hear of your sad news! It made me well up as I know how devoted and strong you have been for your hubby all these years.

I pray you’ll find comfort in knowing that he is in a better place and pain free.

Love and prayers,

Mx

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I am so very sorry, Tippy. What a terrible shock. But what self-possession your husband showed, right to the very end - I do admire him for making brave decisions. Thinking of you and sending you solidarity and strength. Amanda.

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Dear Tippy, my heartfelt condolences to you. As you say, we know it's coming but we are still so emotionally ill prepared.

Thank you for all of your shares which has been of a great help to many.

Thoughts and prayers to you

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I am so very sorry to hear of your loss. I am sending love and prayers. May your dear husband rest in peace, free from the suffering of this disease.

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Dear tippy. So sorry for your loss at least he is at peace. Such a horrible disease. Remember the good times. I saw my hubby recitated it was awful. He changed his to being rescutated it’s awful the choking. I often think as he only 65 where are the good tomes for retirement. I fed him at home yesterday I started crying and couldn’t stop. My condolences to you and family. Prayers you will be strong for you. Hugs.

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I am so very sorry for the loss of husband. My thoughts and prayers for peace and comfort are with you.

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Dear Tippy,

Sincere sympathy offered to you. His suffering does not continue, but it is a deep loss for you, nevertheless. And may he rest in peace, a good life ended too soon and too painfully. May we who survive live to see a cure for these terrible conditions!

Marilyn

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Thank you so much to everyone for so many kind words

Love Tippy xxxx

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Oh dear Tippy, what a shock for him to leave so suddenly but a blessing in many ways, I guess you're feeling in a state of disbelief. As for the DNR, I was foreverever misplacing it and the thought of them trying to resuscitate against his will would have been unthinkable. It happened to my father, he had obviously passed away but they were obliged to keep trying until the doctor arrived, so horrible. You have done a wonderful job caring for him Tippy and it's hard to switch off when they leave after all the hard hours you have dedicated to him. I felt great sadness but also relief as I knew he wasn't going to suffer any longer and that he was ready to leave the existence that PSP had inflicted on him. Please be gentle on yourself no try to ignore all the negative thoughts that will flash through your brain. It is a year on the 11th of this month that Ben left me and I can't pretend it's not hard but you just get on with things, sometimes in a halfhearted way but you struggle through.

Sending lots of love

Kate xxx

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Thank you Kate

I think my brain is hard wired to listen out and to react in a certain way. Listening out the whole time is just second nature . So absolutely get what you are saying

How will you spend the 11th hope you will have support around you??

Love Tippy xxx

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Think I just want to spend the day at home, maybe looking at old photos and just contemplating. Will be thinking of you too.

Love Kate xxx

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Tippy, not sure any of us will ever get out of the habit of listening out for crashes. I still react automatically, if someone trips around me, even before they actually do it, like I would have done with Steve. As for a noisy crash, I feel as if I am up and there, before I even realise. It's PTSD, just like soliders get after being on the front line for too long. I was diagnosed with it, just before Steve died and am still feeling the effects! It's handy when I take my 89yr old Mother out, or trying to catch my 9 month old Grandson, but slightly embarrassing if it's a stranger.!!!

Lots of love

Anne

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Hiya Tippy.

I know that I have already replied to you but just wanted to know that you keep popping into my mind and that I am thinking of you from afar. Love AliBee

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