PSP Association
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Charles has passed

Just letting you know the hero of my heart, Charles, passed away early this morning. I was beside him on the bed and I held his hand. His last moments were quiet and pain free.

Please keep us in your thoughts and prayers.

Cuttercat

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Oh Cuttercat I am so sorry that Charles has passed away, he is in a much better place, sending you a big hug, grieve at your own pace, really feel sad for you. Yvonne xxxxx

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Dearest Yvonne,

I know you totally understand but when it happens it's still awful. Hugs back.

And I will see you in person, I'm planning on it.

Cuttercat

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Thinking of you at this sad time, hopefully we will meet up one of these day, would be lovely. Away with my granddaughter, but wishing I was at home. Yvonne xxxxx

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I know the feeling. Everytime I left home I wanted to be home with him. With what has happened I'm glad I stayed close in that last week. He kept wanting my hand that last day. How fortuitious.

CC

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Yes feeling I should be there. Big hug take time for yourself xxxx

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I'm so sorry cuttercat. Its been a long road for you both. My heart goes out to you. He is at peace.

Big hug from Jean xxx

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I know Jean. You are my equal. So understanding.

CC

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Cuttercat, I am so sorry. It’s been 3 months since my beloved left. I wish I could say it gets easier but so far that is not the case. My prayers are with you. Charles knew you were there and gave him great comfort.

Goodbye is not forever

Goodbye is not the end

It simply means I’ll miss you

Until we meet again

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Dicampbell

Such a beautiful thought.

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Touché!

A big hug.

Luis

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I'm in that whirlwind of business but right now I'm alone here and it's just terrible. So quiet and sad but I'll lean on you in the future. If I may?

CC

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Know exactly what you mean, horrid journey, both before and after Hugs

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Dear Cuttercat

So sorry to read your post. What a battle you have both had. Charles must have been exhausted, he is now at peace away from the horrors of PSP.

Please treat yourself gently as you too must be emotionally and physically shattered.

Sending lots of love and a big hug at this painful time

Tippy xxxxxx

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Love you Tippy

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So sorry to hear this Cuttercat. You have had a long struggle and I'm afraid you will miss him but it does get better.

Love Vicki

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So sorry cuttercat that Charles has passed away my thoughts are with you but at least now he is rid of this crap illness

Please take care of yourself

Love and hugs to you

Sue xx

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You are right, this "crap illness" will haunt me forever. He is free now, thank God!

CC

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Our prayers are with you.

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My thoughts and prayers are with you. You too are a hero. Your ability to keep going in such difficult situations shows how amazing you are.

Hugs, love and admiration to you.

Karyn

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Thank you Karyn. I needed your kind comments.

CC

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Cuttercat I am so sad for you darling. I send my condolences to you at this sad time. You have been very much his love just as he was yours. Tears here thinking of you. I am hoping you have some support there? I am glad you were there with him. Glad that he went peacefully too.

He had suffered a long time, as had you, just watching him become ever closer to this day. Please be kind to yourself now, and when you think of Charles think of the good times you had and the life you shared before this awful illness. Many never know that. You will meet again. In the meantime he will be near you to help you get through this. We will be here for you too anytime you need us. Please remember that?

Love and hugs to you.

Marie x

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What lovely words. I will take your hugs anytime.

CC

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Cuttercat,

So sorry for your loss. So glad you were with him and able to see that it was peaceful.

Praying for you as you grieve.

Love to you.

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Hello Cuttercat

Tonight, when its quite dark, I will light a candle for you both. No, I'm not a Catholic, as I have said before, I follow the old Seafarer tradition of those shoreside putting a candle in the widow for lost ones.

I am so glad you shared until his leaving.

Hold him in your heart and he will always be with you.

Can I offer a hug?

Warmly

Kevin

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Kevin it is always so perfect that you light a candle. You are a lovely caring person. Love Jxx

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Dear Sweet Kevin,

I am holding him in my heart like you said. Candles are the light outside and inside. We all have our own light. I am Catholic and believe everyone shines.

I'll take hugs now and later when I meet everyone in person.

Whirlwind now and quiet house is making me sad.. Oh well.

CC

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That is lovely Kevin, you have certainly kept me strong through my journey with Leon Massive thoughts and hugs to you and Liz xxoo

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Dear Cuttercat, may I offer my sincerest condolences to you

I’m so very sorry

Huge hugs and I’m sorry that’s not enough but my thoughts are with you x

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XXX and sadness.

Patrick.

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Oh, my sweet friend! I am devastated for you. Although we know that Charles is at peace, you must deal with your exhaustion and raw emotions as you try to make it through the next weeks and months without him. I will be praying for you in earnest. Please know you are not alone. Our Father will comfort you during this awful time. Sending my love.

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I'm sorry to hear your news, my thoughts are with you to night....xxx.Brenda

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Cuttercut I am so desperately sorry that your Charles has passed away but being with him, as I was when my hubby passed, is a great comfort as time goes by. My thoughts are with you. Take care. Love Jxx

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You are right, I take great comfort that I was able to be with him as I always was. Just like you.

Thank you honey.

CC

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I too took immense comfort knowing that I was there till the end, not at home as Leon would have liked, but laying beside him. It was a long 8 plus year journey., Hugs Marg

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Dear Cuttercat, I'm so very sorry for your great loss - even though Charles had such a long and difficult struggle and deserved release and peace. You were an amazing advocate and carer- Thank heaven he had you if he had to go through this awful disease!!

Peace and healing to you. We are still here for you.

XXX

Anne G.

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Thank you so much! I'm grateful you're still here for me and I'm counting on it in the future when I will truly need support.

CC

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Sending you much love and strength at this heart wrenching and breaking time.

Look after yourself well and take it at your pace.

May Charles now be flying high and free. He will be beside you always.

Xx

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Spiralsparkle

Sorry to step in here... but...

Your post is so brilliant for me.

Love does break time... time is a mere convenience... Love let's us step through it...

Wonderful - It lifted my spirit.

xxx

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That makes me smile that you felt a benefit also.

Hope no hangovers from the party yesterday and Liz had a smile on her face last night

Xxx

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Alas... Hot sunshine and even a small glass of wine put's me to sleep... So it was a really nice green tea for me.

xxx

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I read this news with a deep sense of sadness. You both have suffered so much, but at least Charles is now at peace.

Please, please, look after yourself- which could be as difficult as some of your posts

have indicated about the sheer awfulnesss of his suffering and your distress. I do hope and pray that your grief at the loss of your dear husband does not overwhelm you. You deserve to be able to be more relaxed and less stressed after all you did for him, I think you have been amazing, a true heroine and I wish you well; in due course, please do keep in touch on this site and let us know how you are doing.

With love, sympathy, hugs and prayers,

Ann xxx

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what to say???? No words can tell the story of what you have gone through, what you still have to deal with BUT he is now free from the suffering and in a way you are also free from your suffering. You will heal in time but take comfort in that you did the best you could for him and that you loved him. I still have to go through this but you and other carers are helping me and others along the way, guiding us down this miserable path to help us with our deepest fears and sorrows. My heart breaks for you and the others who have traveled this path. I have lived through your pain and difficulties through your postings and I thank you for the sharing.

Love and hugs

xxxxx

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Yes, the hard parts are still ahead. I'll count you on you again, dear friend.

Love,

CC

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Dear Cuttercat - you were a source of comfort to me by replying to my posts so sympathetically - and I am sure Charles was so grateful for your presence and care, too. Sending love to you Mary

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I am grateful I was able to help you, I makes me feel better. Sad and hurting.

Love,

CC

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Oh Cuttercat, what a shock! So good you were with him to share his last moments. He would have found that comforting.

Your last post indicated to me that he had had enough, but I was not expecting it so quickly.

My husband died the same way, after an endless bout of coughing that was controlled by morphine. I found the coughing so hard to watch and was pleased to see him relax at last. We had made our peace and farewells.

You must be exhausted and empty. Take heart from the thought that he is free of this aweful disease and out of pain. You did all the right things to help him.

You fought a good fight on your journey together, and you loved and cared for him to the end. When the immediate feelings are diminished, you will be able to reflect on a journey well fought together, and of your love for each other.

My thoughts are with you at this time. Just let the wind take you and float for the time being. You have a busy time with family ahead. They will help you through to calmer waters.

BIG HUG (( ))

Jen XXX

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Amazing, but like you when the coughing FIT started I had a gut feeling it was going to be bad. I was so angry it wouldn't stop and when it did he was so agitated. Then we had two good days and he was gone.

I have a great deal to do but plan on a visit to the UK very soon.

Hugs,

CC

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I give my prayers................many of the shares have already expressed my thoughts.

I found for me after Jeff's death, that reading the postings, and contributing where I could, has helped me considerably. So did attending grief support groups, two. One a few months past his death was secular, and one close to a year past was through my church.

As the disease manifested itself in different ways for different caretakers and those ill......the grief process will too. There is no "right/correct path" in the grieving.

Blessings, Margarita

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I will re-read and take your advice. It's hard either way and I feel so alone.

CC

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Cuttercat,

I am so sorry for your loss. But I am heartened to hear that he left in peace, with the love of his life at his side. Take care of yourself now and take peace in knowing that you did such a great job as his carer. You and Charles are in our prayers.

Dick and Tannia

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Hi Dick, how are you doing? Have you seen any positive results with Tannia in the Biogen clinical study?

Keeping positive thoughts and prayers for Tannia...........Margarita

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Hi Margarita,

I have already posted this but I am sending to you in case you miss it in the posts:

My wife is currently in the 7th month of the Bio-Gen study (not the similar Abbvie study). It is a double-blind study of a monoclonal antibody that is intended to attach itself to excess TAU and then flush the TAU from her system. The current drug will, it is hoped, slow the progression of the disease. So, it is not a cure, but a big step in that direction.

My wife had her half-year evaluation and 7th treatment last Wednesday. We were told by her trial doctor that he thinks the treatments may be working on her, and he thinks he has seen slower disease progression. Anecdotally, the administrator of the trial at Northwestern also thinks she is seeing slower progression. Especially compared to another one of her patients who was in about the same place as my wife when their treatments were started.

As you know, it is a blind study, so we have no way of knowing if she is getting the placebo, but her regular Neurologist, the Neurologist running the study, and the study administrator are all cautiously optimistic that she is receiving the medicine, and that it is working to slow the progression of the disease. So....Great News!

Then we almost immediately got some very bad news. The night she received her treatment, she became violently ill. It turned out to have nothing to do with the treatment. She had a Gall Bladder attack and has gall stones. They tried treating these with antibiotics and pain medicine, and they tried removal of the stones via endoscopy. They want to avoid giving her a general anesthetic because general anesthesia frequently induces rapid progression in patients with PSP and other progressive cognitive disorders. They have exhausted all other approaches, and she will be getting the operation with a general later this month.

So...good news and bad. AKA, another day with PSP. Please keep my wife in your prayers. We are all pretty terrified going into this necessary operation. There are numerous stories on the site where people are reported to have advanced their PSP symptoms precipitously over night following the admin of a general anesthetic. We are praying that is not the case with my wife.

Warm Regards,

Dick

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It's been a long and unforgiving journey for you both,glad to hear Charles end was a peaceful one.Now another tough road for you to learn how cope with your loss.

May your heart heal in time.

(((((Hugs))))) to you and your family

Dee

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💔💔💔💔😢😢😢😢 sending you much love and prayers. Xxx

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I am so sorry to hear your news but pleased Charles is free of this cruel disease. Now you must look after yourself Pauline xx

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So sorry to hear of your loss,my sincere condolences to you and your family. Charles no longer in pain. Pray that you will experience peace and strength.

Henry

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My thoughts are with you.

hugs

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So sorry for your loss dear. I pray that he is in a better place...

Be strong and know peace

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A big hug Cuttercat.

Luis

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I am so sorry to hear. I know how hard this is for you.

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I am sending you my love and deepest condolences Cuttercat ... Charles is most definitely at peace .

Take care of yourself

With love

Jude

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I am sorry to encounter you only at the final stages of your PSP journey, Cuttercat, just as I am beginning mine. But I am so encouraged to read all of these condolences, seeing how your love and commitment helped so many. That in itself gives hope to us newbies.

God bless you and your loved ones at this time. Julietxx

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It is with a heavy heart that I add my deep sympathies.

xoDorie

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Heartfelt condolences to you,free from this horror. Jayne xx and hugs.

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Peace to you - Cuttercut

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Oh Cuttercut, I am so sorry to read this but what a blessing you were next to him and holding his hand. You were so true to his care and I hope you can take comfort in that.

May you rest and find peace and acceptance. Thank you for sharing with us. 💔

Hugs,

Liz

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Sending deepest sympathy for your sorrowful loss, prayers for comfort and peace for you as face the painful days ahead and go bravely forward knowing Charles is always with you in your heart.

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Peace be with you Cuttercat, the passing of our love ones is painful, but for them, they are free of this terrible disease and they are at peace.

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So sorry to hear this sad news. He is free of this ugly PSP now. Hugs to you and your family.

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Dear Cuttercat, I'm so sorry to hear about the passing of Charles. You'll both be in my thoughts and prayers.

Ketchupman

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Thank you dear man.

CC

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My love and thoughts to you and your family at this sad time xxx Kim and Barry

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So very sorry for your loss xx

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So sorry to hear your sad news. I know Bob is not going to be too far behind. Now its time to look after yourself.

take care, prayers are with you

Joan

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Dear Cuttercat, I send this message with sadness in my heart, Charles fought the fight and then said "Enough is Enough" and passed from this world. You are now left you pick up the pieces and try to come to terms with all that has happened. I'm still in that place and can't take in that Ben is no longer physically with me but I sense his presence in the house. The grieving is still at a very raw stage, as I'm sure yours will be for a good while. The lovely Funeral Director who oversaw Ben's very beautiful Farewell Tribute recommended a very good book called 'It's OK that You're Not OK' by Megan Devine and it is helping me to understand my grief and how others can help you to live through you're grief.It's the only book I'm interested in reading at the moment as it's the only thing close to my heart.

I'm sending you a huge hug as a PSP sister in arms and I'm sure all the 'stuff' you have to get sorted is taking its toll on your energy and emotional state. Let us know how Charles's Farewell goes and be sure we will all be there in spirit.

Lots of love

Kate xxx

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Thank you Kate, Leon passed Saturday week ago, I shall look for that book, sounds just what I need. The support from all on this site is amazing, just reading posts helps immensley Hugs Marg xo

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I totally agree Marg it's the only place you feel you can be totally honest about your feelings. I guess you're in a daze at the moment, when is Leon's Farewell?

Sending a big hug

Love Kate xxxx

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Hi Kate, Leon had a cremation on Tuesday, with no one present. His wishes were/are that as we were Grey Nomads travelling this wonderful country of Australia, he wants his ashes spread in several spots that had special memories. I am yet to collect his ashes, the funeral parlor hasn't rung me to say they are ready. He also wanted celebrations of his life as I go on my journey with him by my side. We did and I will continue to do a lot of house/pet sitting and have met so many wonderful people and pets along the way, so will again catch up with them and celebrate. I am auto pilot still. The hardest part is having so much time on my hands now. I get stuck into gardening, reading, knitting, reading posts here it all keeps me strong. Leon had 8 long years of P.S.P. such an incideous illness, but had 7 great years on the road, so that is my greatest achievement. Hugs and thanks again, will peruse the libraries, book shops etc today. Marg xxoo

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Dear Marg,

Charles was 5 years but I know it started before that. I too have time on my hands and it's only been two days. I'm just happy to have the website as I'm not thinking straight. So sad.

Cuttercat

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It seems you had a wonderful and carefree time on the road together, I so admire folk who follow their dreams. I'm assuming you will be taking his ashes on the road again, scattering some at the special places you have visited. Bet you will keep some to travel along with you at all times so that you feel his presence?

Take good care of yourself Marg, it's not going to be easy, as, like me and lots of others who have recently lost their soulmates the grieving journey has only just begun and its painful.

Sending you love and a big hug.

Kate xxx

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Thank you Kate!!! I'll get that book as well. Yes we are PSP sisters and brothers and I'm raw with emotion as well. I'm here alone in the house with no one and it's just awful. I have someone spend the night but relatives don't come until Thursday and then a whirlwind before the funeral. Then everyone leaves and I'm left to pick up the pieces. I knew this would be what it will be like. Sad to the core.

Please keep me in your thoughts and prayers and I'll check in again soon. You are a darling.

Cuttercat

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It's tougher than tough Cuttercat, there is nothing I can say to ease the pain. Grieving is an extension of love so it's bound to hurt but needs to be done, I am wallowing in the pain because I feel I need to, think it will help to get me through. It's very personal this grieving and no one can or should tell you how to do it. I don't want people to tell me I'm doing well or things will begin to get better soon, I just want people to understand that I need their support to help me through my grief but not their sympathy or insincere words of kindness. Don't I sound like a grumpy old lady but just saying it how it is.

Bens Farewell Tribute was full on as the house was full on f people who had to travel and stay over for a couple of nights. It went from silence to manic and back to silence again over those few days, very strange in many ways. I hope that Charles's Funeral is a great tribute to him and that many fond memories are shared, I will be thinking of you.

Love Kate xxx

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Just like you. Silence now and silence soon. It's horrendous.

CC

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I'll second that Cuttercat.

Kxx

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Now you move from one place you never wanted to be to another place you never wanted to be. My beloved’s death took place nearly a year ago.Sometimes it seems as though it happened yesterday,sometimes it seems like ages ago.Sometimes it seems it never happened.

My loving thoughts and prayers are with you.I love Kevin’s practice of lighting a candle- I may try it myself!

My best advice to you is to take one day at a time,same as you did being a caregiver for him.You will get through this! Xxxx,Janet

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Yes from one place I never wanted to be to another. That says it perfectly. Thank you so much, Janet.

CC

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Yes. Thats right. Eight months on for me.

This site is so important to me.

love, Jean xxx

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Really sorry to hear your news.

Sending you a big hug.

Dawn xx

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Oh Cuttercat,

So sorry for your loss, I hope you’ll take comfort in the fact that Charles is now free of pain and is in a better place.

Thinking of you and sending you love and prayers.

Mx

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I am so sorry for your loss. You are in my prayers.

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So thinking of you, I lost Leon the same way, laying beside him, Saturday week ago, 8.30 a.m. A new journey ahead, lots of relief, but lots of sadness too. Hugs to you xxoo

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I can't find the relief yet but I hope I will.

CC

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Prayers and hugs. I am so sorry to hear of your dear Charles. Nancyxxxx

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Cuttercat, I am sorry to hear that Charles has passed on. I am sure he knew you were with him every step of the way. Sending peace, love, and compassion.

Adrianna

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Hi Cuttercat, I am so sorry to hear that Charles has passed away. May he rest in peace, finally free from this evil disease.

Sending big hug and much love

Lots of love

Anne

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So sorry, ~ wishing you and your family the best as you pass through this difficult time.

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Dear Cuttercat, I'm so sorry you have lost Charles but glad he had a quiet, pain free time which you got to share lying beside him and holding his hand. I'm sure he found much comfort in that too. Take care, and sending you much love and praying you find strength for the days that lie ahead. Nanny857 xx.

Ps Thanks for your guidance and hope to hear from you when you are ready. xx

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So sorry about your hubby, life seems so unfair at times, it’s always so hard to deal with such heartache, prayers for you and your family. Keep your chin up. Nettie xxxxx

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Thinking of you Cuttercat - how are you today?

Anne G.

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Really sorry to hear of your sad news. Jò

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Dear CC

I am so sorry for your loss. Many of us here lived with PSP alon side you and Charles. Some are still taking care of loved ones needs; and then theres those of us with whom you now join; the ones who are holding tightly to the wonderful memories of their beloved -snatched away too soon. Your experience with Charles in those end days was very much like mine and Bruce's . Now comes the new journey . Even though we have prepared, we are never ready for it. My prayers are with you my friend. Thank you so much for helping me with B....you and others helped me so very much I hope we can do the same for you .

Do Well,

Love and tears,

Andrea

The LORD is close to the brokenhearted and saves those who are crushed in spirit

Psalm 34:18

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. Isaiah 43:2

Casting all your care upon Him. for he careth for you....I Peter 5:7

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Oh Cuttercat I am truly sorry to hear this. My heart is with you, I'm glad the end was peaceful and you are now rid of the monster that is PSP. Wishing you strength and love for the days ahead xx

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