Hospice again! Hooray.: Hi, just had... - PSP Association

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Hospice again! Hooray.

Heady profile image
20 Replies

Hi, just had brilliant news, S has been accepted back for another session at our local hospice day centre. They are saying it's going to be a six week course, (once a week) but if he responds, they will let him stay for the full 12 weeks.

I really thought we had come to the end of that little bit of respite, but thanks to picture showing S laughing, when he was there last time, the community nurse, who only sees him at home, sitting in his chair, with his mouth open, realised that he is still getting something out of their day centre. For me, oh to have the house to myself, not to have to go out everytime we have a sitter. For S, it's a reason to get out of bed and go off on his own, without me fussing!

Never know, now I might last a bit longer with S at home. My plan in my head is, make Christmas then see how things are, well that should be doable now, so perhaps I will make Easter!

Like Duffers has said in her post today, watch out credit card, you are in for some serious flexing!!! Christmas shopping obviously, as if I would be so decadent as to spend money on myself. Too right it's going on me!!!

Lots of love

Heady

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Heady profile image
Heady
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20 Replies
abirke profile image
abirke

hahahaha...You girls that know how to shop...Even if I had the money, I don't know how to shop!!!I buy stuff for B...but me....I can't even buy stuff at the 2d hand store so it's not about money....it's more I hate stuff....

So with that , buy me somethin pretty Heady ...you know I can't....Uhm I don't like knick knacks; I love books hate to read....don't eat can't drink....Geeze i'm a bore....oh wait Iike music!!! and good discussions....hahahah

You have yourself a great time S and lets hope Heady does too! lol

AVB

Heady profile image
Heady in reply to abirke

I had to practice hard AVB. Haven't always had access to money, during my life. I do eat and drink (probably(!!!) too much) don't like knick knacks, love books and reading, if I have the energy. Not really into music anymore, hate 2nd hand shops, can't bear the smell. Know I would love to buy you a coffee and have a good natter. If only heh!!!!

Lots of love

Heady

abirke profile image
abirke in reply to Heady

Thank you Heady! I love strong coffee and even stronger( not vulgar) conversations...you know the type that might offend others but amongst friends , only good !!!

Thanks for the cup and the conversation!

Heady profile image
Heady in reply to abirke

One day AVB, one day!!!

Lots of love

Heady

abirke profile image
abirke in reply to Heady

;)

Satt2015 profile image
Satt2015

Lol fabulous news heady!! I'm so pleased for you both!! Don't worry yet about Christmas, one day at a time! I can already hear the tills ringing with that credit card 😀 Spend away!! X

doglington profile image
doglington

Here's to decadence !!!

I don't know how I would manage without the hospice break.

He's been going every week for two years ! I don't ask if there is a limit. If it ain't broke, don't fix it !!!

I often go out but sometimes just stay in the house alone and at peace !

Love Jean x

Heady profile image
Heady in reply to doglington

I use to hate being in the house alone. Hanging around waiting for him to come in, "Oh, I'll only be an hour!" 4 later and I was spitting feathers. Now I would be more than happy to pay for this hospice service, or similar, but we have to rely on charity and be grateful for what they offer. I am not complaining, I just hate this reliance on others. I would love to get control back in my life, but there isn't the service out there, no matter how much money I had!

Lots of love

Heady

doglington profile image
doglington in reply to Heady

You're so right. I find the lack of control of my life , but too much responsibility, one of the most difficult things.

Love, Jean x

NannaB profile image
NannaB

So pleased Heady. Hopefully they will do what our hospice has done and let him continue without a break. It will be C's 3rd Christmas this year. Oh how I love Fridays.

X

Heady profile image
Heady in reply to NannaB

Unfortunately they won't, I have asked numerous times. At best it will be another 12 Week course and then yet another fight to get them to take him back. I am extremely surprised I managed it this time, so not holding out any chance for another one. It's so sad, our loved ones need this. I get a reasonable amount of respite, but S, who has this evil disease, gets nothing for himself. No proper diagnosis, no cure, no drugs that work, no one to even have the courage to explain this illness and its repercussions. All he gets is little olde me, shouting and screaming at him, because he has dared to get himself in this state. Sorry, respite effects wearing off!!!

Lots of love

Heady

NannaB profile image
NannaB in reply to Heady

Big hugs coming your way.

X

Heady profile image
Heady in reply to NannaB

Thanks!

Debbieann profile image
Debbieann

Yes, I've been told he's gone beyond his 12 weeks, and the hospice day care is going to stop, although F makes me feel like I am forcing him to go, he's actually said he'll be upset if he doesn't go anymore, and the hospice staff say how lovely he is, and he likes a laugh! Think they maybe talking about somebody else!!!

Anyway long and short of it is, I guess it must do him good!!!!

Xxxx

nanonthenet1 profile image
nanonthenet1

So very glad and happy for you, xx

Patriciapmr profile image
Patriciapmr

Great news Heady, enjoy your time alone in your home, it works wonders I know!

Saying that though I've just had the night from hell, been cleaning Keith up since 10 0 clock, I know I can't go on any longer, as much as I love him I'm going insane!

But you can bet your life I'll feel guilty in the morning when I've slept on it! Arrrgh!

Love....Pat xx

jzygirl profile image
jzygirl

Oh heady I'm so pleased for you. Hope they keep him on for the full 12 weeks it will make the world of difference to you.

I was so looking foward to Brian starting back and i think he was to. So know how much it means to you.

Enjoy your time off... Janexx

Duffers profile image
Duffers

That's great news heady. It's such a wonderful, selfish feeling to be able to forget for a few hours and not be "on call" all the time.

Spiralsparkle profile image
Spiralsparkle

Yay waving pom poms in celebration for you. I know how much it helps both of you as I can't wait for Fridays when Mum goes off to the hospice. We are lucky though as they have allowed her to keep going after the initial 6 weeks. I don't know how I coped without it now. Enjoy the time and spending money. X

Nanny857 profile image
Nanny857

Hope S gets that 12 week spell and you can shop till you drop!!! Lots of love Heady xx

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