My wonderful husband

[Baileyboo]

Hi, sorry folks, I am losing my mind.

I buried Les on Friday not Led.

Love

Pat x

[Althea-c]

Much love to you,

Althea 💛🌟

[Baileyboo in reply to Althea-c]

Thank you

[Heady]

Hi Pat, we all walk around in dream, not knowing anything that's going on or what day of the week it is. It's that wonderful thing called numbness, it's there to protect you as much as possible. Saviour it as long as it lasts, it does keep a tiny bit of pain away.

Sending big hug and much love

Lots of love

Anne

[Baileyboo in reply to Heady]

Thank you Anne. I am missing Les. He had been in a nursing home prior to the hospital and I am hoping that I am able to cope with normality as it has now become, I will have more time in my days now. I had an appt with my doctor this morning and she, like you, said numbness is a coping mechanism.

Thank you for your advice too.

PSP is a vile disease.

Love

Pat x

[Kevin_1]

Hi Pat

I'm so sorry to hear your news.

Give yourself time, its hard, but it get's easier to bear.

Love to you.

Kevin

xx

[Yvonneandgeorge in reply to Kevin_1]

Hi Pat so sorry, this is a vile disease, sitting here feeling so sad, sending you a big hug. Yvonne xxxxx

[doglington]

Thinking of you, Pat. Its hard. I am still feeling numb - I think that might be a help at Christmas. Difficult times ahead. Big hug from Jean xx

[Baileyboo in reply to doglington]

Oh Jean how right you are. This will be my first without Les and I am dreading it. Over the years we have had wonderful Christmases together with our children and grandchildren and it will never be the same. I am going to allow myself this Christmas to be sad but after this I will make the determined to find gun and laughter again as I know Les would want me to.

Love

Pat x

[doglington in reply to Baileyboo]

I hope you mean "fun" not "gun" !!

I agree. I am allowing myself to feel sad because I find I am becoming more and more in touch with how Chris was before PSP and that makes it so difficult. Of course it is also hard for the children. We all just want to survive it.

Then we will move on !!

Love, Jean x

[Baileyboo in reply to doglington]

Oh heck, I honestly meant fun not gun. I am using my mobile and I either touch the wrong letter or predictive text takes over.

I too am thinking and remembering Les before PSP hit. It is heartbreaking remembering just 2 years ago when Les was having fun with our grandchildren. He then was diagnosed with pneumonia and sepsis and sped downhill after that.

We will allow ourselves to have a quiet Christmas this year and then look forward to the rest.

I was looking through the recordings of TV programmes and there is a Christmas film Les recorded for me as he said I would enjoy it. I was at work when he did this. This is one of the moments, and I am sure there will be many more to come, when I realise what I have lost. I feel so alone.

This was recorded 2 Christmas's ago.

Hugs and love

Pat x

[doglington in reply to Baileyboo]

Yes. Chris also went downhill very quickly. I certainly feel glad that he was spared a long decline but it is shocking to think back to last Christmas when he could still certainly be part of things. So we haven't had long to adjust.

Perhaps we should compare notes after Christmas ?

Hugs and love to you too. Jean x

[Baileyboo in reply to doglington]

Thank you Jean

Christmas is going to be tough and we can exchange notes. I have a daughter and son along with a daughter-in-law. 5 beautiful grandchildren, Caitlin 14, Evan 12, Lakota 5 and two completely non-identical twin girls Orissa and Oran 2.1/2.

We must compare notes. Neither of us will forget our loved ones we will think nice thoughts on Christmas day.

Love and hugs

Pat x

[doglington in reply to Baileyboo]

you will have fun with so many young children around !

I have a daughter and two sons - ten grand children. The youngest two are 11 now.

It will be a warm, comfortable day but so sad too. We do all talk about granddad so he will be with us.

Happy Christmas to you,

love and hugs

Jean xx

[Baileyboo in reply to doglington]

Happy Christmas to you too Jean.

You are probably right that Christmas day will be lovely and grandpa will be with us if not physically he will be in our thoughts.

Love

Pat x

[Marie_14 in reply to Baileyboo]

Pat why did he record that film? Because he wanted you to laugh and be happy. When you watch it I am sure you will feel his presence there with you. He sounds like a lovely man.

God bless you Pat. You will be alright, it just hurts to lose your loved one though. Not a lot we can do about that?

Marie x

[Baileyboo in reply to Marie_14]

Thank you Marie

He was amazing. A great husband, dad and grandpa. Very thoughtful and caring but changed so much and so quickly ehen PSP reared its ugly head.

I am happy that he is no longer in pain but feel so alone.

Led never smoked, gambled or spent time in pubs, his one main enjoyment in life and that pleasure was taken from him. It broke my heart when he could smell the food in hospital but not eat it. Where ever he is now I hope he is able to eat once more.

Love

Pat x

[Baileyboo in reply to Baileyboo]

Sorry Marie

Food was Les's favourite thing

Pat x

[Marie_14 in reply to Baileyboo]

Pat, I understood that. That phone again! You just have to remind yourself the Les you knew and loved was not able to help what happened when he got PSP. It is a cruel disease and affects the person with it and their loved ones.

I am still worn out months later. I wasn't expecting that. The emotional, and physical affects combine to drag you into a dark place. However you will come through, we all will.

Les is free of it now as are so many. I am always sad when someone loses their loved one but glad for the person suffering that it is all over. I like to think of them free at last.

Love to you and family.

Marie x

[Baileyboo in reply to Marie_14]

Hi Marie that is the one comforting thought during this horrible time. I know I will learn to live with this it's just too soon now.

Love

Pat x

[aliciamq]

May you and your family move through this difficult time in good health and peace!!!!

[Jafarrar]

I pray that the sun will soon shine for you again. This sickness takes us to a dark place for several years. Now may your days become sun shine and peace of heart. It is so heart wrenching you dont want your loved one to go but you hate seeing what is happening to them and to you. My hope is in the Lord and in his promises that is were my help comes from. Pray you are at peace. Love Jenny

[psP556]

So sorry to hear that Pat. I know how you feel. We buried our Mum on Friday too. She was the most beautiful sweetest Mum and I will miss her for the rest of my life. It hurts, PSP is so horrible and my only comfort is she is no longer suffering. We live in Australia but Mum was originally from Stockton, England. My heart goes out to you, Lots of hugs from Carolyn.

[Katiebow]

I think we can all forgivevyou for a little mistake after all the things you have gone through. I think that your mind and body have gone into protective mode to help deal with your bereavement.

Sending warm wisges andcavbig hug

Love Kate xxx

[Baileyboo in reply to Katiebow]

Hi Kate

I am concerned that when this numbness wears off that I will become an emotional wreck.

Losing Les is the hardest thing the damned PSP can throw at me. A few of the family wanted to give a donation to research for PSP, only to find there is no research fund for this vile disease. My mothet-in-law asked to make provision in her will for this but was advised by her solicitor not to as there is no funding for this. Why? We are watching loved ones suffering horrendously and dying as a result of PSP.

We donated £400.00 to the ward where Les was so lovingly cared for during his last week's. This is a ward for stroke victims. Lea was given a bed on this ward as a stroke victim can lose the ability to swallow and Les fell into this category.

It does worry me that there appears to be no major funding for research into PSP.

I loved Les with every fibre of my being and will until I pass.

I am allowing myself to stray from grieving but I can't understand why PSP isn't in need of funding.

Sorry for rambling Kate.

Love and hugs

Pat x