Update!: Well, I went to see S this... - PSP Association

PSP Association

9,177 members11,302 posts

Update!

Heady profile image
20 Replies

Well, I went to see S this afternoon. Wanted to wait until tomorrow, but had a hair appointment booked, close to where he is, so it seemed silly not to pop in.

He is not happy. Held my hand, I could feel him screaming inside, but his face or mouth didn't show anything! Tried to get him to communicate, but he just couldn't. I know he is fine, his nurse was teasing him about liking his food, was in the lounge with everyone else, when I got there, looked happy and connecting with the staff. So I think the home is OK, he just doesn't want to be there. Who can blame him, he is stuck with these really old people, all with their masks on, mouths open, lights on, but nobody at home. The sad thing is, he is exactly the same, doesn't look out of place at all. He is a lot younger than most, but unless he smiles, you wouldn't know it. Feel heartbroken at the moment, but I know it's the right thing.

Hopefully, another good nights sleep tonight, then I am off to have some R & R, with my sister, niece and three dogs!!! And I am going to take my own advice and leave my iPad at home. I love you all, but me and PSP need a break from each other!!!

Lots of love

Heady

Written by
Heady profile image
Heady
To view profiles and participate in discussions please or .
20 Replies
Escada29 profile image
Escada29

I want a break the only thing stopping me is the cost of these places even with rolling respite in place its still going to cost a considerable contribution I dont know what to do if it costs too much I dont get a break x

gypsywoman1947 profile image
gypsywoman1947 in reply to Escada29

It's a shocking dilemma to be in when caring for someone, it should be compulsory for full time carers to get a certain number of respite weeks free a year, after all we are saving the government pounds aren't we ??

abirke profile image
abirke in reply to gypsywoman1947

Here in the US we should be grateful to not have to snack on Alpo (dog food) for our main meal anymore. Getting respite care is just too darned social democratic.......feel the Byrne......

AVB

Georgepa profile image
Georgepa

Too right !!!!!!!!!!!!!!!!!!!!!

Doglinton profile image
Doglinton

Make the most of it Heady !! love, Jean x

NannaB profile image
NannaB

Hope you check in when you get back.

Have a really good time and hope you manage a few dry dog walks.

🌞🐕🐕🐩🍷💤

X

Yvonneandgeorge profile image
Yvonneandgeorge in reply to NannaB

Heady have a lovely rest, good idea to leave your iPad at home, go and enjoy yourself, S will be fine, and he will be home soon, be thinking of you. Yvonne xxx🍸🍸🍸🍸

Auddonz profile image
Auddonz

How long will he be there?

nanonthenet1 profile image
nanonthenet1

I know how you feel , but he is in a nice place, but enjoy your time knowing he is fine...we have had a really bad setback, had to call GP who had to contact the emergency response team, my darling man is now in emergency respite as he has declined very suddenly over the weekend, falling and can't move, my heart is breaking having to leave him there with no one knowing him, his room is very basic, and no one seemed to be interested in his care, we stayed to settle him in bed and I will go back first thing in the morning and bring his own bedding and pillows , it was just so awful but because we now have to have to change his care plan and have hospital bed we had no choice but to do that.....I feel so bad but pray he will be ok until he comes home in a few days.....sooner if we can....It felt like I was abandoning him but he knows he is loved and we will make it up to him in his new safe room xx

easterncedar profile image
easterncedar in reply to nanonthenet1

Sorry for your situation, nan. Get some sleep yourself tonight. Love, ec

Peter2 profile image
Peter2

Heady, enjoy the break and any others you can get, they make all the difference to how you can care for S when he comes home.

Peter2

easterncedar profile image
easterncedar

You go, girl! We'll be happy to hear about your lovely time later. Forget about us for a few days, please!

jillannf6 profile image
jillannf6 in reply to easterncedar

H I EC

HWO R UI LOV EYOUR REPLY TO HEADY;

JILLXXXX

easterncedar profile image
easterncedar in reply to jillannf6

Thanks, Jill. Kind of you to say so. How are you today? Are you getting the wild weather Georgepa has described?

Amilazy profile image
Amilazy

Enjoy the time out Heady, sorry you feel he is not enjoying the home but he needs you well and fit to care at home on his return.

Best wishes Tim

NanBabs profile image
NanBabs

Enjoy your well earned break Heady. I can empathise with everything you say. As you know, P is now in full time care and I feel the same as you when I visit every day, but .... I know deep down that it was the right, no, the ONLY thing I could do.

In order to go on looking after S you MUST factor in these respite breaks, it certainly kept us going for longer.

xx

DenB profile image
DenB

Aaaarrrrhhh, Heady,

That made me cry! Our poor dear loved ones.....I just can't imagine the angst that they must feel but can't communicate! At least we can communicate ours!

Dx

Nanny857 profile image
Nanny857

Enjoy your R & R Heady. Quite right to leave iPad behind. Nanny 857.

abirke profile image
abirke

I so know how you feel. I know youre probably already off but I have been sick for almost two months culminating with a huge case of depression and anxiety. And though my kids tried to help, It was just us 4.... B, me, my illness, and his! Waking up daily to take care of him and never ever having a break or even a glimpse of sympathy from my husband. Well now its down to just me, B and his illness.....mine i guess is over...but Lord i could use a break!

Have fun,

AVB

Katiebow profile image
Katiebow

Enjoy your well earned break Heady, you certainly deserve it. It must break your heart leaving him somewhere he doesn't want to be but on order to carry on you need some 'down time' enjoy your walks, laughs, conversations etc and feel 'normal' for a few days. He will be fine when you get back and you will hopefully feel rejuvenated. Kate x

You may also like...

Drama at every step - update

PEG feed, and wants to continue being fed by mouth, we know this is risky but do it in a controlled...

Update on swallowing problem

transferred back to the nursing home today. I was not able to transfer him to another facility to...

Update on Prof Morris appointment

still hold back on psp diagnosis. He said if P was in his 70's he would diagnose him. He felt it...

Teeth Cleaning & Update

when the theatre staff and surgeons couldn't get the mouth plate in/out of G's mouth, so I could be...

Update on Dad

Parkinson’s as his tremors worsen when doing something. He saw the neurologist on Monday where he...