PSP Association
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That roller coaster is heading down again!

We've been on these downward journeys many times but we have always got to a point when we have climbed back up again. This time I don't think we will. Yesterday Colin was very unwell with the temperature sky high, erratic breathing and very anxious. This has happened many times but the difference yesterday was the copious amounts of something he was coughing up. The GP called, said he possibly had a chest infection as his stats were low. He asked C if he wanted antibiotics and he tucked both thumbs in. He has also indicated he doesn't want any more PEG feed so I'm just giving water. I gave him a small dose of morphine and it calmed him down the rest of the day. Hospice at home are calling in daily from now on so I know I will be well supported.

For those of you who pray, I would value prayers for a quick and peaceful passing. Colin is certain of what is to come so has no fear of his final destination, it's the journey he was anxious about. For those who don't pray, I would value your thoughts. It could still be some time as his heart is strong. I really can't believe we were both enjoying the sun in Hastings on Sunday. Oh how things can change.

X

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Oh Bev and Colin, I don't know what to say that will be of comfort to you but know that I'm thinking of you both and offer a loving and supportive arm around your shoulders. Give Colin a hug from me.

Love Kate xxxx

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Thanks Kate.

X

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Oh Bev I'm so sorry and I really feel your pain, I wish I could offer a solution to this nightmare but we all know I can't. Sending you both a loving hug, I hope it helps knowing I'm thinking of you, you are such an inspiration to all of us.....

With fondest love....Pat xx

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Bev oh felt so sad when I read your post, saying a prayer for you both, you are such an inspiration to us all, sending you a big hug, also going to light a candle for you both, big hug to you both. Yvonne xxxxx

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Thanks Yvonne

X

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Oh NannaB ! You were such a help to me. Now so many on this site seem to be near journey's end!

My thoughts are with you all. I am praying for you. I hope God gives you the stamina, resilience, and love to guide you, and peace towards the end. You have fought the good fight, with far more need and ferocity than should be, because of PSP.

Love and hugs to you and Colin.

Jen x x x x x

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Thanks Jen

X

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i gree h

ol jill]

xxxx

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Darling nannab I'm not really religious but of course I'll say a lil prayer for you both shortly

Sending you much love and strength at this very difficult time

X

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Much appreciated. I'm sure He hears all the little ones from anyone who speaks to Him.

X

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Yeah I think he does too x

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NannaB, my thoughts are with you and Colin at this terrible time. I hope PSP for once is kind to Colin and let's him pass peacefully.

I am sending huge hugs across the ether for you and Colin and much, much love.

Lots of love

Heady

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Thanks Heady

X

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NannaB my thoughts are with you and Colin .You have been such a stalwart figure on this site with advice and sympathy in equal measures.I wish for you what I wish for us .With you in spirit

.love Georgepa

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Thanks Georgepa.

X

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Sending you & Colin peace and healing. I hope his path now will be as best it can be.

I am a spiritualist and will send energy to you both to aid a peaceful transition.

It is lovely he has been able to communicate his wishes now.

Massive hugs to you.

Xxx

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Thanks Spiralsparkle (great name!)

Much appreciated.

X

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I am so sorry for you and Colin, Bev X

Just to let you know that I am thinking of you both. Xx

Denise

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Thanks DenB

X

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NannaB

I'm so sorry. I will keep you and Colin in my prayers. May God's peace be with you both.

LynnO

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Thanks LynnO

X

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So sorry to hear this, Bev.

How lovely that you had good days out right to the end.

Chris and I are both thinking of you and Colin. You are both an inspiration and I hope he has a peaceful passing.

Lots of love and a big hug from Jean xxx

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Thanks Jean

X

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Thinking ofyou nannab you are such a brave lady. I know our turn is round the corner and don't know how we will cope. Lots of love to you both Xxxx

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Thanks Doreen

X

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You are in my prayers. You are such an inspiration to us. May God hold you in the palm of his hand.

Christine47

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Thank you Christine. He has given me peace that only He can give.

X

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Be you are both in my prayers and I hope and pray that it is as peaceful as Brian's stairway to heaven was. All my love Jane xx

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Thank you Jane. That is my prayer too.

X

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I pray that God will grant you both that inner peace x

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Thank you. He has already so your prayer has been answered.

X

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Dear NannaB, You are always so kind and generous with your good advice, and you have helped and supported me more than I can easily say, all this time. I wish I could be as wise for you now. I'm glad Colin was able to make his wishes known; what a blessing that is. Now I hohpe he finds mercy and peace, and does not suffer any more. I know he was fortunate in having you. No one could have taken better care of anyone than you did of him. Hugs and love to you both, Ec

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Oh, I am so sorry, NannaB. Stopping to pray right now. My heart is so heavy for you. Sending a big virtual hug...

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Thank you.

X

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Thinking and praying for you NannaB and Colin.

Estelle

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Thank you Estelle

X

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Dear Bev and Colin, thinking of you both, sending love, maddy xx

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Thank you Maddy.

X

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Oh nannab.....sending you all my prayers & thoughts & love at this time. Hugs too xxxxx

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Thank you SuzeW

X

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I am Thinking and praying for you and your darling, also your family, C is surrounded by love, sending love and hugs xxx

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Thank you, much appreciated.

X

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Oh NannaB you have both done so well it has to end at some point for all of us, thinking of you x

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Yes it does sad to say. Thanks for your thoughts.

X

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Dear sweet NannaB. You and Colin are such a valued person on this site . I pray that Colin is comfortable and you are secure knowing that all is as it should be. My knees have been on the floor in prayer for the both of you. My virtual arms are around you darlin. Please know how much I love you guys.....

Your sister in Christ,

AVB

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Thank you AVB. It makes such a difference knowing we have the love, prayers, thoughts of all these lovely people. It's also a good feeling knowing we have brothers and sisters in Christ.

Sending my love to you as well.

X

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Oh NannaB, I'm lost for words, thinking of you both, you have given me soooo much inspiration, I hope a can be an incy bit of the wonderful carer you are.

I wish I could say something of real comfort to you now

Sending you love and hugs, (even though they make you cry) sorry don't pray, if I did I would

Lots of love

Debbie xxx

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Debbie, just knowing you and the rest of this world wide family are thinking of us helps give comfort.

Don't apologies for not praying. I still remember well the time when I didn't and would avoid folk who I knew did. It's strange where life takes us.

Thanks for your love and hugs.

X

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Xx

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NannaB, my thoughts and prayers are for both of you. I pray that God will continue to bless you with the strength, peace you need during this time. Colin I pray that God gently holds you and comforts you. Both of you have fought this battle of PSP with such strength and dignity. God be with you both.

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Thank you. And with you also.

X

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Certainly prayers NannaB, for both of you. God bless and look after yourself as well.

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Thank you Duffers.

X

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I haven't read the posts on here for some time as part of my continuing efforts to totally disengage. Today I open the email to find your post. What to say? Others have said it all. You have been an inspiration to so many and now you are approaching the end of your PSP journey. May Colin's departure be as peaceful as possible. I shall be thinking of you.

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Hi Pattz, I've been thinking of you over the last few months especially this week as I remember how peaceful your darling left you and hope and pray Colin's journey is the same.

How are you doing? I can understand you wanting to disengage from PSP, I think I will want to but don't want to lose touch with this lovely family. Is your daughter still with you. Have you found a life after PSP.

Thank you for your thoughts. They are much appreciated.

X

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I am fine. My daughter is living here now and has started a business Ottostop Design which is doing well. Mainly she screen prints and now has her work stocked in four shops in Istanbul and has started doing workshops teaching people how to screen print. You can see more at ottostopdesign.com. Meanwhile I am off to Iran for a month on Tuesday. Want to see if I can travel alone after so many years of travelling with Chris. Of course yesterday a translation job appeared in my inbox and I need the money so am glued to the keyboard at the moment as deadline is Monday. To be honest I can't find the 'unsubscribe' button on this site so could be around for some time! Stay strong.

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Nice to get your news, pattz. I hope you have a wonderful and magical trip to Iran. And safe, of course. I hope you will post something on your return, share a little of your adventures. (Foolish of me, but I will worry a bit.) love, ec

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I read that Homa is home, good news. Be my friend on FB where I am 'Patricia Temiz' and you can read updates with photos which I hope to post regularly while in Iran. And please don't worry, I'll be fine.

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Well, if anything could get me on facebook, pattz, that might be it. The kids have set up an account for their father; I may try to use him as a front!

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You do that.

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Lovely to hear from you Pattz. Have a wonderful trip and as EC has said, don't forget to tell us all your adventures. Sorry, I too am a worry puss. Stay safe!

Lots of love

Heady

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I worry about others but not myself. However, I truly think there is nothing to worry about and I can't wait to get to Iran. Not looking forward to covering my head all the time - apparently there is an announcement on the flight prior to entering Iranian air space and all the scarves must go on! But to see Iran I can put up with the head covering.

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I feel your pain. Mum has been in a comatose state since Saturday and it's been an incredibly emotional and rough ride.

I'm not religious but have prayed - I think god has gone on vacation as he's certainly not replying!

At least you've had nice moments up until this time.

I hope he is peaceful.

Xxxx

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Oh Mardley39, it is painful isn't it. It's hard to see someone we love fading away and just waiting for the inevitable. I know what you mean about feeling God has gone on vacation. Over the last 6 years I've often shouted/ screamed at and asked Him if He has fallen asleep when prayers appear unanswered, only to find later they were answered but not in the way I expected. The timing is up to Him I but pray that both Colin and your mum remain comfortable and pain free until they leave us.

Thank you for your hopes for Colin's. My thoughts and prayers are with you also.

X

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Thinking of you and Colin,I am not a beiever but sure your faith will help you.Later I will toast your strength.Pxx

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Thanks P. Our faith is helping now but so is the wine. I'll have a drink for all of us tonight.

X

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Ever since I found this site you have always been kind and calm in all your posts, even at this time. You and Colin are in my prayers. I know the Lord will give you strength and comfort.

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Thank you Tokki. Your prayers are appreciated.

X

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As I read all these posts to you and your Colin they becomes an ongoing tribute to your courage and steadfast hearts. You are always a guiding light when we are troubled and I pray our words now can be the same for you both. May our merciful Lord who is right there with you open his arms and bring you peace.

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Thank you Noteasyrc, your prayers are much appreciated.

X

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Still thinking of you and Colin this morning and wishing for peace for you both.

V xx

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Thank you Vicki, I've just read your post and have been thinking of you. I can't yet imagine the emotions you are feeling and hope you and your family will also know peace, especially on Wednesday.

With my love

X

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NannaB my thoughts are with you, there's nothing I can say that hasn't already been said I echo all the other comments. Sending lots of love ❤️ you are a inspiration on this site with all your advice and support you have offered me. Xxxxxxxxxxxxx

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I'm so sorry to read your post. You are one of many on this forum that are always there to support everyone. I hope you can find the strength to get through this very difficult time. Our thoughts and prayers are with you and everyone else that is going through this vile illness. Take care of yourself. Xx

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Thank you am2015

X

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Thats v sad to hear.Thinking of you both at such an awful time xxx

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Thanks millywigg2

X

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Hi there Nannab,

I have to say that I agree with the previous 66 comments!!!!! You have been just so inspirational to so many on this website, including me and I am sincerely hoping that you can draw an incredible amount of strength from those who have written such heartfelt comments.

Please know that I really wish that we lived a lot closer, lots of love nannb

Love Bindi xxxxxxxxxxx

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Thanks Bindi, I have been truly blessed by all the lovely comments, thoughts, prayers etc. It certainly has given me the strength to carry on to the end....so far anyway.

X

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How are you Bev? Hope the tooth extraction went well. Don't forget to rinse your mouth out like a good little girl, I find wine works wonders for cases like this, especially if taken with paracetamol!

Love to you and Colin.

Lots of love

Heady

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I've got another 4 hours before I can rinse or drink and I think lunchtime is a bit early to open the bottle. Tonight though when our eldest son arrives from Suffolk. I will rinse in 4 hours though. I've already had my first dose of ibuprofen and paracetamol. Spending the day sitting next to Colin

X

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The sun is just rising here, and I know the day is already old for you, Bev. I just want you to know that you and Colin are in my thoughts. Sending love and hopes for peace.. Ec

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Thanks EC, Colin had a quiet night and is now peaceful.

X

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Wondering how you both are, in my thoughts and prayers today.x

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C had a quiet night and is wide awake now. I'm holding his hand as I type one handed. Emotions are all over the place but that's to be expected.

Thanks for your thoughts and prayers.

X

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Stay close. Hold his hand. Tell him how wonderful he is what a great job he has done and how much you love him and will be alright. That it is ok to go. Pray with him. Rub his neck. Hug him. Lay with him if you can. God bless I am praying for you both.

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Will do/am doing thanks Kylie.

X

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My thoughts and prayers are with you both xxxx

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Thank you.

X

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So sorry Bev to see your post that Colin is not doing well, I pray that God will give you the strength such a hard time right now. Sending you and Colin a big hug and prayers. Nettie

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Thanks Nettie, hugs and prayers appreciated.

X

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You're both in my prayers.

Ketchupman

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Thanks Ketchupman.

X

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Prayers going up.

Cuttercat

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Thank you Cuttercat.

X

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Prayers for a peaceful passing ❤

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Oh yes mamaw. That's what I pray for him as well

Thank you.

X

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Message to Colin-just try the antibiotics- we now have a terrific respitory dr who says when the temp goes up and stats go down-if we can get to hospital asap he can put in the antibiotics and anti virals and give us more time-cruising Monday 24 to Tasmania-God willing. We know the day will come and it won't work-but until then we keep on battling (off to dr again today-Georg has pains in stomach late in day-from about 5 onwards-any suggestions?)This PSP never gives up.

Will pray for you as well.

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Hi Longsuffering, Colin refused the antibiotics as every time he has had them since 1977, they have brought on his ulcerative colitis and he isn't strong enough to cope with emptying his bowels up to 15 times a day. All antibiotics have the same effect. He is also too tired now after 6 years of battling on, the last 10 months being PEG fed and totally reliant on others for every need. Until this week he has wanted to struggle on but has finally given up. We had a family trip out to the coast with both my brothers on Sunday and in the evening when I asked him if he had enjoyed the day, his thumb went up. Monday was quiet but Tuesday was traumatic.

Good for you for battling on. I hope the trip to Tasmania is good and that you have many more trip out. The stomach pains could be caused by many things but constipation comes to mind. I hope you soon find the reason and something that helps him.

Best wishes.

X

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That ten months have gone so quickly Bev , hard to believe isn't it . My thought are with you xxhugs

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Thank you. My dear man is still with me. I've spent 5 nights sleeping on a recliner chair holding his hand and counting his breaths and the times between when he is not breathing. The times of not breathing have become longer. His heart is very strong and his colour still good. I am so thankful that he has remained calm and at peace throughout. Dozens of people have come and kissed him, some praying, others reminding him of good times we have had with them. Some have been freaked out a bit when he has stopped breathing and there has also been a lot of laughter when he suddenly starts again. We are sure we saw a little smile from him on one occasion when my sister in law squealed and nearly fell backwards as he suddenly took a gasp as she bent to kiss him, thinking he had gone. Two of our sons have been here every day and the other one stayed last weekend. Our grandsons have said goodbye and when the six year old told his teacher, she gave him a book about losing someone you love. All this time, Colin's eyes have been wide open. I physically close them but they open again when I take my hand away so I have to spray them. I hope he can hear us but no longer indicates that he can and I also hope he feels as peaceful and calm as he looks.

X

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Oh, Bev. I'm glad to hear he is peaceful but you must be exhausted.

Gentle but loving hug.

Jean xxx

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Thanks Jean, I can cope with hugs like that. The Crossroads carer gave me a hug on Wednesday as she doesn't expect to be needed next week and I ended up sobbing into her shoulder. Virtual hugs are drier.

My brain is a bit addled at the moment but I'm sure you said you were away, having a break. If you are, I hope you are managing to relax now. If it wasn't you I apologise. Everything is a bit weird!

Love Bev

XxxX

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I am away but had to read your post, although I am generally not reading them.

Love, Jean xxxx

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All my strength is still flowing across the ether. Sending lots of cuddles and so much love to you both.

Lots of love

Heady

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Received with thanks.

X

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Dear NannaB, I am new to this site so haven't had time to make many contacts. I have read lots of your posts though and you seem much loved by all on here.

I will pray for you and your beloved Colin. May God Bless you both.

Marie_14

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Hi Marie, I'm sorry you have had cause to join this site but you will soon wonder how you ever managed without it. I have found so much comfort knowing there are folk all over the world who are willing to listen, advise, laugh, cry with me and I know others feel the same.

Thank you for your prayers which are much appreciated.

X

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God bless you both nannab sending lots of love to you xx

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Thank you.

X

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Morning NannaB. Popped on to see how you both were doing. Thanks for update that C had peaceful night. Much love to you both. X

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Good morning Bev, you were on my mind the minute I got up hope the situation with Colin is much better today praying for you both such a time right now. Many hugs to you.

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Thanks Tttp, Colin had a peaceful night and today has been likewise. I've just given him morphine and paracetamol as he started to get agitated but he has calmed right down again. One of our sons and his wife are calling in soon and another one arriving at about midnight. I'm not going upstairs tonight so will be dozing in the chair when he gets here.

Hugs appreciated.

X

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It is good that you have support arriving at this time x Have a good night x

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Thanks Escada.

X

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Bev you have been in my thoughts for the last few day, hoping you are ok, and surrounded with the love of your family, sending you a big hug, candle has been lite for you both, glad C is peaceful, big hug coming your way Yvonne xxxxxx

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Received with thanks Yvonne.

X

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Still here, thinking of you. Ec

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Another peaceful night. I stayed on his recliner next to the bed and did get a few hours sleep.

X

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Hi Bev glad to hear that Colin is resting and last night and today were better medication really helps just keeping you in prayer glad your children are coming you need them with you. Hugs to you. Nettie

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All quiet. Thanks.

X

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Still thinking of you & yours at this difficult time & sending you love & prayers of peace x

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Thanks. Had a peaceful night dozing in the chair, holding his hand.

X

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Hi NannaB, if your boys are with you, get up those stairs, jump in the shower, then BED!!! They will soon call you if Colin needs you. Even if you get an hour of uninterrupted sleep, you will feel better for it and be able to carry on what you are doing for that, precious bit longer.

Thinking of you and still sending all my strength across the ether.

Lots of love

Heady

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Heady's right, Bev. As always !!

xx

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You are correct, I did feel better after I followed your instructions.

Thanks

X

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Good! Keep up the good work, well getting enough rest.

Sending very large hug and much love.

Lots of love

Heady

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Hi Bev, I hope that Colin is still feeling calm and comfortable and that the family are all supporting you both. You are both constantly in my thoughts, please look after yourself as you enter the final stage of this journey and try to grab as much sleep as is possible. I'm sending all my love and support to both of you, keep holding his hand, he must feel very blessed to have such a kind, warm and loving wife to help him through.

Love and hugs

Kate xxx

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Thanks Kate.

X

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i agree k

;lv jill

xxxxx

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BEv I had to find a way of joining in with all the lovely caring friends on here .

YOu kept popping into my mind all day .

know you are not alone our thought s and prayers with you xx

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Thanks Cabbage Cottage.

X

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My prayers are with you and may your prayers be answered.

Christine

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So sorry that I didn't see this post sooner. I'm praying that Colin is peaceful and not in any distress. I also pray that God with give you peace during this time. I pray that this time will go swiftly and that God will wrap His loving arms around you both and bring you comfort and great peace.

Valerie

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Thank you Valerie. Your prayers have been answered. Colin is very peaceful and not in distress, he is very calm and not in pain. I have been surrounded in love by friends and family. Our pastor said our house was like Piccadilly Circus with all the coming and going but everyone has been very sensitive and said their goodbyes to Colin with a kiss.

I'll let everyone know when something changes.

X

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Still with you, Bev

love, Jean xx

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