1year on : Hi all Not been on as often as I... - PSP Association

PSP Association

9,666 members11,572 posts

1year on

Suebatt profile image
37 Replies

Hi all

Not been on as often as I should have but I hope that you all are staying strong which know is hard and most important the carers get some rest at some point

Today is a year since Archie past to a better place he was in

I miss him so much but I know he’s about somewhere more than likely laughing at me and he is my motivation to get through whatever is thrown at me

Hope you all are ok and sending love hugs and kisses to all

Take care

Sue xx

Written by
Suebatt profile image
Suebatt
To view profiles and participate in discussions please or .
37 Replies
Spiralsparkle profile image
Spiralsparkle

Massive hugs to you.

I imagine today is painful for you.

Lots of love xxx

Kevin_1 profile image
Kevin_1

Hugs to you :)

Wishing you the best

Warmly

Kevin

xx

Suebatt profile image
Suebatt in reply toKevin_1

Thank you Kevin hope Liz and are doing ok

Xx

Kevin_1 profile image
Kevin_1 in reply toSuebatt

Liz struggles. Thus so do I.

We get through each day.

It's all we can ask.

Hugs

Kevin

Suebatt profile image
Suebatt in reply toKevin_1

True but take care xx

Satt2015 profile image
Satt2015

Hey Sue, we miss you! Sending you much love and hope life will slowly improve for you darling x

Suebatt profile image
Suebatt in reply toSatt2015

Hi Amanda

I still watch things on here but don’t comment which I should really

It’s not bad just plodding on as you do

Hope you and family doing ok too xx

SewBears profile image
SewBears in reply toSuebatt

My once very wise husband pleaded with me to remove all “should’s” or “I should have’s” from my vocabulary. He used to tell me to focus on accomplishments and put all of the should’s on a shelf. “No sense in beating yourself up” he would say. He’s still hanging on but oh how I miss his cleverness!

Suebatt profile image
Suebatt in reply toSewBears

Yes it takes things away bit by bit and I was his mouth piece lol and in my vocabulary I always said it was my way to look after him .He ended up on 24/7 care at home and if I didn’t like them they were gone too

Unfortunately you end up having a different life with one thing or the other

Glad that he’s still hanging in there and just make sure you have abit of time to yourself

Sue xx

SewBears profile image
SewBears

Hi Sue, Our stories crossed paths because I joined the group ten months ago. It feels like it’s been much longer than that. I’m probably where you were about three, maybe four years ago? I’m so sorry for your loss. I hope that you are remembering all of the good times before the dreadful disease finally won. Please continue to share your story with us if it isn’t too painful. You mention carers in your post but left out griever’s. I do hope that you’re taking care of yourself too. It can’t be easy. I like your humor and I understand how you think he’s laughing at you for the things that are thrown your way. I lost my mom several years ago and occasionally I talk to her out loud. Especially when I sew something (she taught me how to sew, a lost art). I’ll end up ripping something out because it was done backwards or something and I can just hear her laughing at me. Good times!

Thanks for sharing your one year anniversary. I’m happy to hear that there is still some sort of life after...

Love, from I SewBears

Suebatt profile image
Suebatt in reply toSewBears

Hi sewbears

Yes I remember the good times that we had before the crappy illness tool hold of him .my stories I’ve always put on cause I always carried on with nhs cause they knew nothing and then battled with chc to get his full care

Yes he knew that I would get what was best and the cheeky s d that he was always called me Peggy mount

I have his ashes still so when I want to vent I go in room and carry on or tell him what I’m doing

Yeah I forgot them that are grieving and hoping they are doing ok too

Take care

Hugs

Sue xx

Katiebow profile image
Katiebow in reply toSuebatt

I'm a year down the line too Sue and still have most of Bens ashes, waiting for my son's to visit together so that we can all go to the Ashdown Forest to sprinkle them in the place wher I always took Ben when I collected him from the hospital each day so that we could sit and enjoy the view looking towards the South Downs. He broke his hip and spent 13weeks in hospital, 5 of them waiting for a care package so was desperate to get out of the place for a couple of hours every day. I have taken some ashes up to Edinburgh, the place of his berth and scattered them in a place meaningful to us both. For me I feel the need to hang onto them! That reminds me, must sort out his clothes as haven't touched them either.

Sending love

Kate xx

doglington profile image
doglington in reply toKatiebow

I'm the same Kate. Still have the ashes. Most of his clothes too.

X

Cuttercat profile image
Cuttercat in reply todoglington

Can’t get rid of some items of clothing. They are him.

Cuttercat

doglington profile image
doglington in reply toCuttercat

Thats true. So many memories are evoked by clothes.

x

Suebatt profile image
Suebatt in reply toKatiebow

Hi Kate

I remember that you was near to Archie passing

I’m one of these people that I have to move everything when I rang for the stuff to be removed eg profile bed etc they told me it would be in a month so I told them no problem it will be outside for you hah they came within 3 days

His ashes I’m going to split and like yourself I’m taking to Scotland at some point cause he lived up there as a kid and he never forgot his roots

Hugs love and kisses to you Kate

Sue xx

Katiebow profile image
Katiebow in reply toSuebatt

Yes I had all the equipment removed the day after he died but didn't feel the same about clothes and ashes. I would have thought that very weird before I went through it myself, you just can't anticipate how it's going to take you! xxxx

Marie_14 profile image
Marie_14

Sue

Good to hear from you again. I am sad for you today I have been there too and it hurts. At least it's another of the awful firsts out of the way?

Take care and remember we are always here for you.

Marie x

Suebatt profile image
Suebatt in reply toMarie_14

Thanks Marie

As I said I do look at the posts and again I should give input sometimes

Hope that u are ok too and getting by in the fashion that we do

You take care

Hugs

Sue xx

NannaB profile image
NannaB

❤️ XxxX

Yvonneandgeorge profile image
Yvonneandgeorge

Sue also think about you, sad times, but time moves so fast, it’s frightening really how time goes. Sending you a big hug. Yvonne xxxxx

Suebatt profile image
Suebatt in reply toYvonneandgeorge

Thanks Yvonne

I hope your well too I agree that the times move so fast it feels like only yesterday then also years ago

I look back and see that there are 3 stages in our life with this crappy illness

1st. Where we had a life together and getting our good memories

2nd. Where this comes in and eventually takes over our life in so many ways and destroys the normality of our life’s

3rd where we have to get a different life again pulling through with everything that has gone on and basically starting again doing things on your own and now only have our memories

I honestly think that this crap made us stronger throughout the bad times where we coped in our own ways and sort of gave us the bit of strength to get through it

Yvonne take good care of yourself and hope that you are doing things now that you couldn’t before

Take care lots of hug and kisses

Sue xx

Cuttercat profile image
Cuttercat

I’m approaching that mark too. Alas I’m just trying to take it one day at a time.

Cuttercat

Suebatt profile image
Suebatt in reply toCuttercat

Hi cuttercat

Yeah unfortunately that’s all we can do

Take care

Sue xx

Katiebow profile image
Katiebow in reply toCuttercat

Funny how differently we all cope (or not!) There is just no knowing how it will affect you and you have to ride the storm however that happens to be. The loneliness is very hard to deal with don't you find?

Sending much love

Kate xxx

Suebatt profile image
Suebatt in reply toKatiebow

Yeah I agree with the loneliness cause he had been housebound for 2years I was basically in too if I did nip to shops it was a nightmare so the first 6mths after it really felt odd being out but not bad now

I’m glad of my sister and brother in law as they are all I see and my neighbours each side of me but I get by

Take care

Sue xx

Cuttercat profile image
Cuttercat in reply toKatiebow

Yes the loneliness is bad. Not lonely for people but lonely for Charles. Keeping busy doesn’t help. Nothing does. Alas.

Love

Cuttercat

NanBabs profile image
NanBabs

Dear Sue,

It will be a year tomorrow since P left us, so I can empathise with everything you said - one day at a time.

xx

Suebatt profile image
Suebatt in reply toNanBabs

We can say that’s it’s been a journey and half

You take care

Hugs

Sue xx

Katiebow profile image
Katiebow in reply toNanBabs

There was certainly a good few of us who lost our soulmates this time last year, funny how that seems to happen.

Sending love

Kate xxx

JantheNana profile image
JantheNana

Sue I am approaching the end of my second year without my beloved.The first year went by in a whirlwind,I think I must have been numb. All I can remember of that year is dealing with emptying his study (or “man cave” as some call it today). But this second year I have become more of myself again. There’s things I wish I could do that my physical limitations don’t allow me to do but I plod on. Hoping a good year for you! Hugs!!. Janet

Suebatt profile image
Suebatt in reply toJantheNana

Hi Janet

This year has gone by quickly and I am just getting out and about a bit more now and I’m like you I’m limited to whatI can do but it better than sitting in house

Hugs back to you

Take care

Sue xx

Nanny857 profile image
Nanny857

Lovely to hear from you Sue even though it is a sad reminder of your loss. Keep the happy memories to the front of your mind. Sending you love and hugs . Nanny857xx

Suebatt profile image
Suebatt in reply toNanny857

Thank you nanny857

Yes I should voice abit more because I still read things

Love and hugs back to you

Sue xx

doglington profile image
doglington

Good to hear from you Sue.

I'm in a similar place. I'm doing all the right things but it feels empty.

Keep in touch. We can still support each other through the next stage.

I now have much clearer memories of Chris without PSP but in some ways that increases the feelings of loss.

Big hug for you Sue from Jean xxx

Suebatt profile image
Suebatt in reply todoglington

Hi jean

I know what you mean about empty for the yr previous I had 2 carers in 24/7 then nothing .i look back before psp of how we were which helps

You take care of yourself too and sending hugs and kisses back to you

Sue xx

Hiking13 profile image
Hiking13

Thinking of you, be kind to yourself but it’s a hard journey- all of it the PSP bit and then the grieving bit is relentless too

Love Sarahxxx

Not what you're looking for?

You may also like...

does having a PEG really mean less quality of life

Hey guys hope you all are coping ok so dads swallowing is getting real bad, its come to that time...
Mustafa128h profile image

Holding on to Hope

Hope comes in many forms, from the fingers-crossed-for-luck superficial hope to the deep and...
hmfsli profile image

HELLO

Hello everyone. I hope your all having a good Easter.  I've been looking at a few posts to try and...
GovJ profile image

Update on swallowing problem

Michael was transferred back to the nursing home today. I was not able to transfer him to another...
Mikey12345 profile image

Help on coping strategy

Help, any ideas or tips ? Husband has frontempural dementia as well as PSP. Hoist has to be used,...

Moderation team

HelenPSPA profile image
HelenPSPAAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.