PSP Association
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Thank You to our Survivors: Part 2

This is a Thank You to those of you who have completed the PSP/CBD journey with your loved one, and who stay connected to this site. Your "freedom" has come at a great cost: a deliverance from suffering for your dear one, and a different kind of suffering for you. Despite your loss, you have stayed connected to us and give us the benefit of Perspective. You share your grief, you give us valuable information and also the hope for a new life after PSP/CBD.

So in the depths of this cold and dark January (..at least in the N Hemisphere..) thanks and love to Andrea, Jean, Sarah, Marie, Anne, Dan, Bev and more. You can't imagine how helpful you are to us all. XXX

Anne G.

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Hi Anne

This is such a beautiful, thoughtful thing to do, shows what a kind person you are.

Also full of gratitude and respect to all on this site.

Love and hugs

Helen xxx

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Here here love you all 💕

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Thank you Anne. I think I can answer for everyone else, those of us that have finished the first part of the PSP journey, still need all our friends that we have made over the years, to get us through the second part. It's just as rocky and lonely. I want to still be part of this group, I need to be. I need that feeling, that i can still help, in some small way. The bottom line for grief is, you are on your own, how ever your loved one died, but the years and the trauma of PSP, we all go through, somehow sets me apart from other widows. I personally, think it's the same, but I know in the widows group I belong to, they treat me differently, because everything I have been through. Only people on here, again, know what it's like and know it's "normal!!!!!", and I need that, more than ever.

So thank you again Anne, for letting me stay and for making me feel needed.

Sending big hug and much love

Lots of love

Anne

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How are you treated differently at your widows group, Anne?

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There is a real mixture of reasons, why we have all joined this group, including a murder. Mostly it's cancer, everyone seems to be in awe about what I have even through and how long i had to care for Steve and don't really understand how I feel about him leaving me, long before his death.

Lots of love

Anne

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I had a neighbor whose wife died in 2013 , just months after Bruces diagnosis. I wondered then as I do now , what would be harder, the sudden death with no preparation ; no goodbyes or I love you's and maybe the last words were that of anger; a grief and guilt that cannot be remedied or prepared for .....or would it be the long term progressive diseases such as our loved ones had... with too much preparation too many goodbyes and still the guilt and grief . B and I had a sad but lovely four years together.

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I have a close neighbour who had the alternate experience: sudden totally unexpected cardiac death at work during a week where there had been some "snarky-ness" at home. They were a very bonded loving couple. Her grief has seemed bottomless. I think of her whenever I'm feeling b__tchy about my current life....

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Agree wholeheartedly, good for you!

Please keep staying with us, we need you.

Cuttercat

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Anne, you are so definitely loved and needed on this website from those who care and those of us who require the caring!!!Never never, never underrate your value on this site please

love, Bindi!!!!!!!!!!!!!!!

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Thank you Bindi! Hope you are still keeping as well as PSP will let you.

Sending big hug and much love

Lots of love

Anne

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Bindi, did I read right? Are you one of our PSP survivors? ,(the ones I saluted on Post 1)?. Thank you for tuning in. So valuable for us to hear from you! Sorry I missed ypur name earlier. Xx

Anne G.

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Thank you Anne G., I try not to interfere in the day to day goings on of those new to this place as I don't want to add extra suffering of what will be. However some stuff I just have to respond to.

And you are right these folks here who have suffered the complete effect of PSP are good friends and soul mates if you will. I continue to appreciate and respect their wisdom and new experiences in life our after death.

Andrea

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Thanks Anne, and pretty much echo what Anne said in reply. All these Anne's lol.

I found this site useful on My PSP journey, and the continuing journey that post-PSP is.

We are all friends here, all going through our journeys our own ways, but all in need of help, advice and probably most importantly reassurance, and you lovely people have delivered it in spades at the points when I have needed it most.

Keep on being awesome everyone!

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Yes. Support is still needed after psp has done its work. Its always a two way thing !

xx

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Hi AnneG thanks for both posts. I too am thankful that those whose loved ones are now free of PSP have stayed with us as their expertise and knowledge is much needed and valued. And for those who are still on this horrendous journey your posts are much needed too.

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Dear Anne thank you for your kindness. As Heady (Anne) says we need you all as much as you need us. It is very much a two way thing.

Heady is right about being treated differently. It is simply that others don't understand what we have been through I think. Some people, even friends, don't want to know. That is hard to cope with at times. Here we are welcome and can actually help at times? I know when I found this group I was so relieved to discover others who were willing to help me. I thought after my husband died that I was going to help (if I could) those who were new and probably feeling the pure shock and desperation I felt.

Hope you are well Anne? These conditions take so much out of people.

Hugs to you.

Marie x

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Marie, If it's me Anne you're asking (as Dan says, so many Annes!..) thank you, I'm doing well compared to many: we are not in the really physically difficult stage yet. My worst complaints are the loss of my husband's personality, companionship, energy, presence..and of course my grief at his losing his good life way too soon - and my life, as it is all chores and very home-bound (which I wasn't before!...I like to roam about a little).

I'm trying to keep perspective and health up for the really hard part(s) to come. It helps me to know that it won't last forever (as cruel as that may seem) and because of the Survivors and other members on this site who help me keep perspective, I can be a more giving, loving spouse. I'm just "delaying my time". Having said that, I DO have a few days away coming up thanks to my lovely step-daughter, and that will be grand!

Hugs to you :-)

Anne G.

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Anne where do you live? I like to know where all my pals are. Everyone on this site is regarded as a pal by the way! You are all great! Hugs to you all.

Marie x

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Hi Marie, I'm just outside Vancouver BC Canada where today, again, as it has all month, it is raining! (Hence my "handle" ;-)

You?

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Ahhh do you know I wondered why the raincitygirl!! Does it rain that much in Vancouver? I know someone who went there to live but he came back to the UK! Maybe we don't have as much rain as we think we do here? I live in Cheshire right up against the Welsh border! I am originally from Ireland however. That seems a very long time ago now! My children and grandchildren are here, so apart from cousins who live in Ireland my family are now here. My brother lives in Spain.

Marie x

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We're both used to moss and ferns then, ha ha!!

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Seems like it! 😁. One of my aunt's used to have fern in the front garden! One has started to grow in my back garden!! I couldn't believe it but think I will keep it...memories eh?

Marie x

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PS: Beautiful part of the world, Cheshire: Hubby and I took a small bus tour of Southern England from Bristol to Canterbury. Too short a time in each place but we saw Cheshire at one point :-) Hubby always said he could live there...

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Thank you for this post. I do not post very much on here but check in daily. I have only just started the second phase of this journet ( I lost my precious Liz just 2 months ago) and still feel completely lost without her. The comments on here help me to realise that I will get through this dismal stage ( eventually). I would like to think that at some point in the future, I will be able to offer more support and comments. Thise site has and is helping me to retain my sanity. Thank you all you wonderful people from the bottom of my heart , broken as it is. X

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You are not alone George; we're here - all working on keeping our sanity! Glad to see you check in :-)

Cheers

Anne G

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Thank you Annie. It means a lot to know we are not alone.

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You are still in the early stages of grieving for your Liz. It gets easier over time but the road ahead can be very bumpy! I go up and down all the time. Nothing is easy is it?

Glad you still log on each day Georgeg25. There are so many of us who do.

Take care and hugs to you.

Marie x

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Thank you Marie. Bumpy indeed. The road sometimes seems sooo long it is difficult to see an end. It is there but we must still travel along it. Take care.

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George how right you are. I keep waiting to get there wherever there is! In the meantime I just get up and read my email and do as little as possible. Some days I have spurts of energy so maybe I am getting there but don't know it?

Take care.

Marie x

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I know exactly what you mean Marie. I am the same. Sometimes I just sit around all day with no inclination to do anything. Then some days I charge into housework washing shopping etc. I pray that we both and all the other survivors can find peace in our lives. Sending thoughts and hugs to all.

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Every morning I grab my iPad and see what good information there is here from you good folks. I don't know how I could make it through the day if it was'nt. This journey is getting long and I am getting tired and I hope I can keep on smiling for a while yet. All the comments here, hit home and I feel like I have been walking in their shoes. Just another reason why we need to support each other on this terrible PSP journey. Just me here in Minnesota, Joyce

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Amen to that Joyce.

❤❤

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Joyce keep going until you realise you can't. Then get help!

Marie x

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Thank you Anne. I think that as the months go by those of us who have lost our loved ones to PSP/CBD have perhaps gained a more balanced view of the whole dreadful experience. Maybe when the daily tribulations of the caring role have faded a little one can 'see the wood for the trees' better. The fact is that it is a truly horrible illness however you look at it and none of us who are left will ever be the same again. The challenge now is to try to find a meaningful role for ourselves after PSP caring. The new freedom brings its own stress in choosing the direction in which to go and having the confidence to grasp the new opportunities.

The old friends here provide an anchor in the rough seas we encounter as novice solo sailors.

Love to all

Vicki

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Its like you're painting a picture of what comes after, Vicki..I can catch glimpses of it ...

Thank you!

Anne G.

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