Sad news the 8 yr battle is over. - PSP Association

PSP Association

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Sad news the 8 yr battle is over.

hellebore profile image
37 Replies

F left us early this morning. I am glad I was able to care for him at home and he was here till the end. It's been a hard week with many moments of despair but our new chapter begins. Our son will ride the London 100 again in August for PSPA along with many others. I will continue to lobby for more respite beds and will check in here from time to time.

I send my thanks and deep respect to you all.

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hellebore profile image
hellebore
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37 Replies
easterncedar profile image
easterncedar

My sincere sympathy, Hellebore. Being able to be at home at the end is a great gift. I hope you are comforted in knowing all you did for him. Love, Sarah

Yvonneandgeorge profile image
Yvonneandgeorge in reply to easterncedar

You were amazing keeping F at home until the end, I hope and pray I will be able to do the same. May F rest in peace, PSP can't hurt him anymore. Sending you a big hug Yvonne xxxxxx

hellebore profile image
hellebore in reply to Yvonneandgeorge

Hug received warmly. It does make a difference. Thank you.

hellebore profile image
hellebore in reply to easterncedar

Sarah, thank you. I am only just realising that out of 30 years of marriage so much was spent caring. I tell friends and family to grab life with both hands and don't delay doing those things you want to do together. I was privileged to have had a partner who was so wonderful a human being.

doglington profile image
doglington

Condolences. What a warrior you are !! Well done for succeeding in caring for F in his home. Its been a long battle and I hope you can feel some satisfaction from that.

We are reaching the long stretch now and I don't know if I can face the battle. You give me strength.

Take comfort from the love and caring you have shared during your marriage. Love and a hug from Jean xx

Marie_14 profile image
Marie_14 in reply to doglington

Jean how are things? Is it a case of doing downhill at speed or still bit by bit? Hope you are alright? You are an amazing lady. God bless you both.

Marie x

doglington profile image
doglington in reply to Marie_14

Bit by bit - but diarrhea is one of his symptoms and I find it very difficult. He is getting weaker at walking and falls to one side. I am worried about the next stage as I will then not be able to manage him on my own.

Still trying to hold back the tsunami !!!

If I think of how he was I can;t hold back my personal tsunami !

You know how I feel.

love, Jean x

JantheNana profile image
JantheNana in reply to doglington

Jean,having just lost my dear Don a week ago(it seems longer than that,but at the same time seems unreal) I know how you are feeling.I understand your personal tsunami! During his last days in the rehab facility I would sit feeding him with tears running down.Fortunately he could not see well enough to see them.I wish he could have come home as he was longing to.

Sending my love,Janet

doglington profile image
doglington in reply to JantheNana

The tears are always there, aren't they ?

Love and a hug to you, Janet, from Jean x

Cuttercat profile image
Cuttercat in reply to doglington

All the time, all the time. Can't believe how many tears I've shed and how many I can seem to produce. It never ends and something always sets me off.......alas.

Love,

Cuttercat

Babowen898 profile image
Babowen898 in reply to Cuttercat

How are you, CC, and how is your Charles?

Marie_14 profile image
Marie_14 in reply to doglington

Jean I know what you mean and the awful thing is it can happen so fast. I hope you don't beat yourself up if he has to go into a Nursing Home. If it's close to you you can visit him each day?

It is difficult and there is no point pretending it isn't. However Jean you have been and are amazing! None of us can do more than our best so don't forget that?

Lots of love to you and Chris. Enjoy what time you still have.

Marie x

aliciamq profile image
aliciamq

We'll be thinking of you and your family as you go through this difficult time :)

Heady profile image
Heady

I am so sorry. May F rest in peace, finally free from this evil disease. Now it's time to turn your wonderful caring skills onto yourself. Take your time, grieve in your own way. Nothing has to be done today or even tomorrow.

We are still here for you.

Lots of love

Anne

jillannf6 profile image
jillannf6 in reply to Heady

I AG R EEE ANNE

;LLOL JILL

XXXXX

Marie_14 profile image
Marie_14

Hellebore so sorry that your loved one has gone. However he is now free of the awful PSP? It is so cruel, and the help that people get has to be fought for. It's beyond cruel in fact?

Well done to your son. At least he will make people ask WHAT?

God bless you all at this very sad time. Stay with us as you have so much to offer. Now is maybe not the time as you have to come to terms with what has just happened but we are here for you. If you need support you will get it in bucketfulls here, and maybe you can help others whose lives are about to come crashing down?

Love and hugs to you.

Marie x

Kevin_1 profile image
Kevin_1

Sarah

We are so sorry for you both.

It's wonderful that your partner had their last breath in your home.

Liz and I aim for that. You give us hope.

We both wish you the strength you need in this very hard time.

Warmly

Liz and Kevin

Nanny857 profile image
Nanny857

My sincere condolences to you and your family. I only hope that I get your strength and caring skills so I can keep W at home to the end. Good luck and a big thank you to your son for doing the London 100. Lots of love Nanny857xx

honjen43 profile image
honjen43

My thoughts are with you and your family Hellebore. Your beloved F is now free of CBD.

I hope time will give you peace, joy, gentle memories of your life together, and time to heal. Time is on your side, no urgency or need to do unless you desire it.

Big hugs to you. I know how it is!

Jen xxx

You have my deepest condolences. F is finally at rest.

Ron

am2015 profile image
am2015

I'm so sorry for your loss. Your husband is finally free from PSP. You've done a remarkable job by keeping him at home till the end, it is truly commendable. The coming days will be difficult, but try and look back at the good memories without PSP. Take care

Satt2015 profile image
Satt2015

I'm so very sorry and send my most sincerest condolences to you and your family. X

jillannf6 profile image
jillannf6 in reply to Satt2015

I AGR E E ANDREA]

LOL JILL

XXXXX

ssdw1958 profile image
ssdw1958

I am so sorry for your loss.

EricaE profile image
EricaE

I am very sorry for your loss. My thoughts are with you and your family.

Erica

Katiebow profile image
Katiebow

Sorry to hear your sad news Hellebore but I'm sure you know you have done everything possible to have made F as loved and comfortable until he passed away. My thoughts are with you and your family as you grieve for the man you loved. xxx

D0ttieL0ttie profile image
D0ttieL0ttie

Sending love

Duffers profile image
Duffers

Condolences hellebore. God bless.

Marie

Amilazy profile image
Amilazy

Many condolences I am happy that you were able to keep F at home until the end. Now is the time to grieve and rest, but the new road will start soon remember the good times with F they will give you strength to move on in little steps.

Best wishes and love Tim

Althea-c profile image
Althea-c

I have just joined PSPA and saw your sad news today. My sympathies on your loss. God be with you

Lieve profile image
Lieve

Dear Hellebore - sending you my sincere condolences and a big big hug.

Lieve x

Hugs to you and your family, may your hearts heal in time.

Take care of yourself

Dee in BC

Cuttercat profile image
Cuttercat

I hope I can keep Charles at home like you did. My sympathies because this disease is the worst on the planet and there are many bad ones.

Tell your son we are grateful for his PSPA support. You should be proud.

Blessings,

Cuttercat

Blots profile image
Blots

So sorry to read your news. My mother is following in your steps, trying to care for my father at home as long as she possibly can, so I know how demanding it is, and have huge admiration for you.

hellebore profile image
hellebore

What a group of fabulous people. You all hAve your own problems and despair and fatigue but as always find time for kind words for others. Respect.

Thank you all. It really does make a difference. To all those facing what I have just done, you can do it. Not easy but the energy and patience appears from nowhere. Surround yourselves with a toolbox of helpful people, information and gadgets. Be prepared. Make difficult decision at calm times not when there is a crisis. Have courage to make hard decisions and stick to them.

With thanks and hugs of strength back to you all.

Tttp profile image
Tttp

Sending many Blessing to you, so sorry for your loss, take care of yourself. Nettie

Robbo1 profile image
Robbo1

Please do continue to fight so that this hellish disease becomes well known. Good luck and God bless you.X

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