I’ve finally crumbled : Hi all Just been... - PSP Association

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I’ve finally crumbled

Suebatt profile image
41 Replies

Hi all

Just been reading post for a while now but not put anything on . I’ve had 4 lots of antibiotics and steroids in last 6 weeks so not been too clever but unfortunately Archie has taken a big dip in this fab illness .we now have 24 hr care to look after him as I cannot do it and today hospice consultant came to see us and now they are stopping 2 of his daytime feeds and 5 of his meds .he won’t be treated if an infection start as it won’t do anything for him.anything that has to be done will be done at home as not going back into stupid hospital . I’ve always known that this time would come but when the time has come .im sick of bubbling so now I will be strong again to get through the weeks to a few months at most that has been given to him

Sorry to put this on but your the only people that knows all about and understand it all

Sending love and kisses to all

Take care

Sue xx

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Suebatt profile image
Suebatt
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41 Replies
Heady profile image
Heady

Dear Sue, I know this is a terrible time. But treasure this precious time you have left. Be Archie's wife again, not his carer. Hold his hand as much as you can, tell him you love him. Let the Carer do all the mundane stuff, you concentrate of the most important job, being his wife, lover and friend.

Sending big hug and much love

Lots of love

Anne

Suebatt profile image
Suebatt in reply to Heady

Thank you Anne x

Kevin_1 profile image
Kevin_1

Hi Sue

Sending hugs to you!

Being ill and a carer is super hard. I do hope you recover soon. You are a superb carer and no one could have done more than you are dong.

So sorry to hear your Dad has taken a step down. It's damned miserable.

How is your Mum doing? I guess you are supporting her too? You have a lot on your plate. I'm so pleased you have 24 hour care coming in though that must feel bit invasive.

Hugs to you all. I wish I could do more.

But we are here for you in our hearts.

Warmly

Kevin

xx

Suebatt profile image
Suebatt in reply to Kevin_1

Cheers Kevin

You’ve made me chuckle it’s my other half lol

Yeah I sometimes think of putting a sofa in shed to get out of it cause it’s never peaceful but hey hoe

Hope all ok for you and Liz

Take care

Hugs

Suexx

doglington profile image
doglington

So sorry, Sue. I know how stressful it is. I agree with Anne, although I know that when it came I felt I was not ready to let him go, although I wouldn't hang on to him if he was ready - but I wasn't. You can't love him too much at this stage.

Big hug from Jean xxx

Suebatt profile image
Suebatt in reply to doglington

Thanks jean x

Kevin_1 profile image
Kevin_1

Sorry Sue

It's that older persons moment thing.

Hugs

Kevin

x

Suebatt profile image
Suebatt in reply to Kevin_1

Lol Kevin know what you mean x

Marie_14 profile image
Marie_14

Sue I am so terribly sad to hear this. You are at a low ebb yourself so don't need it now of all times. I have to agree with Anne and Jean. The truth is there is never a right time to let go. You know the truth but your heart hopes otherwise. Just tell him you love him and cuddle him as much as you can. It will help him and afterwards it will help you.

Thinking of you both. If you want to blub that is OK. Try to do it when not around Archie. If he cries then it's OK to share your tears and tell him you love him. Otherwise he might start to worry that you can't manage without him. You need to reassure him now that you will be alright and you will. It's hard but you will do it just as the rest of us have?

Hugs to you Sue.

Marie x

Suebatt profile image
Suebatt in reply to Marie_14

Cheers Marie yeah I’ve been expecting it for ages I just think with finally things are happening I took the reality check

Love to u

Sue xx

Spiralsparkle profile image
Spiralsparkle

Sending you massive amount of hugs.

It cannot be easy but glad the support has been put in place 24 hours, even though I'm sure that has its trials and tribulations.

I hope that you are able to make some cherished memories together as the care has been taken off your shoulders.

X

Suebatt profile image
Suebatt in reply to Spiralsparkle

Thank you

I’ve been one of they lucky ones with CHC i have had 19 hours care up until 2 months and then increased to 24 hrs

Sue x

Spiralsparkle profile image
Spiralsparkle in reply to Suebatt

That's fantastic indeed.

Did they offer you that straight away or did you have to fight for the 19 hours?

Suebatt profile image
Suebatt in reply to Spiralsparkle

We got it straight away when it was applied for which I was amazed by but I think that we me having health problems too when I cannot do much for him I think that helped too

Sue x

Zeberdee profile image
Zeberdee

A very difficult time for you ... I am so sorry... I cannot add anything extra to the posts you have already received .... just sending you a bear hug Jxx

Suebatt profile image
Suebatt in reply to Zeberdee

Thank you same back to you

Sue xx

Yvonneandgeorge profile image
Yvonneandgeorge

Oh what a difficult time for you, hope you start to feel better soon, don’t you just hate psp. I agree with Anne just enjoy your time with Archie. Yvonne xxxx

Suebatt profile image
Suebatt in reply to Yvonneandgeorge

Thank you Yvonne and I will sue xx

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Suebatt

Sue feeling so sad for you. ❤️Xxxx

raincitygirl profile image
raincitygirl

Dear Sue;. Hugs for strength and courage to see this difficult time through to the end. No matter how prepared we are, its still a shock!

Our wise members have said it all - I hope the love you share now will be sustaining for you during the (different) grief to come.

❤️❤️❤️

Anne G.

Suebatt profile image
Suebatt in reply to raincitygirl

Thank you Anne

Sue xx

LindaK12 profile image
LindaK12

Thinking of you and knowing that my husband may have all this to come. Trouble is we don't really know what look after youself x!

Suebatt profile image
Suebatt in reply to LindaK12

Thanks Linda it’s a journey that I hope never to see again it’s like living with the unknown but reality is you know this forum has great people who can always get advice from them

Sue xx

Hi Sue,

Everything has been said but wanted you to know I'm thinking of you both.

Big hugs

Sue xx

Kmacgamwell profile image
Kmacgamwell

You are sharing this with those who either understand or will shortly.

My love and sympathy to you.

Suebatt profile image
Suebatt in reply to Kmacgamwell

Thanks x

Dickenson2 profile image
Dickenson2

So sorry to hear this. It is so heartbreaking just watching your loved ones deteriorate. Make the most of every minute and try and remember all the good times xx

Suebatt profile image
Suebatt in reply to Dickenson2

Thank you x

Megabrew88 profile image
Megabrew88

Dear Sue,

So sorry to hear of Archie’s condition.

Sending you love and light in this difficult time.

Hope you’ll get better soon.

Love,

Mx

Suebatt profile image
Suebatt in reply to Megabrew88

Thank you M

Sue x

AliBee1 profile image
AliBee1

Dear Sue

You are allowed to crumble even if you are strong for Archie most of the time. If you do not crumble or let off steam you will explode and be of no use to anyone. So although I cannot support you in person please know that you are being supported virtually with love, hugs and prayers and so is Archie.

Love Ali B xx

Suebatt profile image
Suebatt in reply to AliBee1

Thank you so much Ali

Hugs back to you

Sue xx

GonnaMissDaddy profile image
GonnaMissDaddy

I remember the time of hospice for my dear Daddy as being... surreal. Like you said you know it's coming but... It still takes us by surprise in a way, somehow. I'm so sorry for your sorrows and your husband's tragedy. You're in my prayers!

Suebatt profile image
Suebatt in reply to GonnaMissDaddy

Thank you x

Allan924 profile image
Allan924

Hi Sue

You only have a little time with Archie. Just cuddle him for me and give him a gentle kiss on the cheek. They are from myself and my beautiful man Baz xxx

Suebatt profile image
Suebatt in reply to Allan924

Thank you I will love

Hugs

Sue xx

Abrecheisen53 profile image
Abrecheisen53

Sue,

I too am so sorry this time has come. So much wisdom, kindness, love and support comes from these pages. I hope you will find comfort and strength in knowing you are loved.

Now is the time to spend whatever time together and let the others do the heavy lifting for a while. I’m sorry I don’t remember who said it, perhaps Jean, but the words run through my mind almost daily.

“You can never love enough:” So simple, yet so profound.

Strength and peace to you and Archie.

Love, Alice xx

Suebatt profile image
Suebatt in reply to Abrecheisen53

Thank you Alice

Hugs

Sue x

aliciamq profile image
aliciamq

Sending love and kisses right back💐

Cuttercat profile image
Cuttercat

I too have tried two antibiotics and can't seem to get well. Charles needs me full time and I'm trying hard. Hospice helps but not enough.

Hospice has pared down his mess as well. He is weak but content. I'm happy to have him each and every day.

Cuttercat

Suebatt profile image
Suebatt in reply to Cuttercat

Hi cuttercat

Yeah I so know what you mean I’m so sorry u don’t get help that is needed and I think that everybody deserves it

Please take care

Sue x

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