There was a post by Georgia peach I believe a couple of years ago. Does any one remember it? I think we are due for another followed by a global hug.
Time for another global caregivers scream. - PSP Association
Time for another global caregivers scream.
Written by
Noella21
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47 Replies
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Actually it was me Georgepa but I quite like Georgia Peach so maybe I will change my name - certainly up for another scream especially after a trapped indoors weekend .All I seem to have done is wipe both ends and throw threequarters of every meal I have cooked in the bin .Yes a good scream is defintely on the cards .
Love it! 😂 Think that'll have to be your nom de plume when you write your book George.
OMG Georgepeach...I don't ahve the energy to scream....I am exhausted...even just listening to your loved one labor in their breathing sucks out your own life...I have tubes going in and out of B s body and cans of enteral for his meals.....it should be neat and organized and smooth sailing.......The enteral along with his neurology is making him constipated; the tube going out is giving him urinary t ract infections....the utis are crumpling him up from weakness so that he can barely move....I am just too exahusted to scream but go on without me....
AVB
I feel for you. That is incredibly hard go deal with. I will scream twice one for each of us. Hugs and prayers.
A scream will relieve the primal energy and contrbute to the greater well being of the universe so says Georgia Peach the purveyor of psychobabble ,personally as Georgepa,I think its better than banging your head on the wall .I tend to stamp my feet as well .If I really set my mind to it I can probably outdo most toddlers tantrums .Try it ,preferably in the supermarket or some other crowded public place.
Sorry about the food and constipation we are there too ,nine days tomorrow .I dare the nurse to say there's nothing there which is what she said on Thursday .
We will have our scream and you can scream with frustration ,anger ,anguish ,whatever grabs you but let it all out and let the world hear your pain and know we are all doing it together .How about 4pm on February 1st then that gives all our American friends a chance to get up and join in with an early morning scream .Not too difficult to work out the time difference but it's a must that we all do it together .
Maybe by February.....4 pm your time (UK) is (US) 11 am Eastern Standard; 10am Central; 9am mountain; 8 am Pacific...
By golly thats perfect timing....we in the US will be able to have a tantrum in Walmart or other stores....with our brothers and sisters across the land and sea!
Thanks George pa Your'e a peach!
AVB
Hey, I'm already screaming... Should I just continue, or take a break and come in on cue?
Seriously, I'm with you.
Warmly
Kevin
Kevin you've been quiete xx
Hi
Yes, Liz has had a major step down mentally and physically. We had the OT in and he said she should really have a bed downstairs with commode and hoist. However I can still manage the transfers - Couch to wheelchair to stair lift to wheelchair to toilet or bed... So am continuing using turntables.
Her behaviour, laughing etc keeps me in a poor emotional state tho'.
I keep going by forcing myself to learn new things... Right now I am reading Mc Gee's "On food and Cooking" and I have just completed Baldwin's work on Sous Vide... I now do a lot of Sous Vide cooking... It is stupendously easy and melt in your mouth... That makes me tearful too! I now cook better than ever and cooking is only of value if cooking for someone you love. Liz can appreciate it at the moment though. I barely eat.
So your food in the bin stuff really get;s it over to me. I understand. I do hope it get's better for you, just for a wile at least.
I'm low at the moment I guess.
Thanks for asking though.
Warmly
Kevin
xx
Kevin look after yourself, start eating properly, you will be not good to Liz our yourself, if you are not eating. What about CHC I am sure you had it? You need to get away for a while, I am sure on your last post you had some rest bite. Yes I am joking in the big scream xxxx sending you a big hug Kevin xxxx
You are right
Chuckling too. 
We have CHC, but no care agency availability in our area!
I found a rather expensive agency and the poor manager was taken to hospital with 'something very serious' two hours before she was due to visit to assess.
She must have read about PSP 
That agency now has all its calls routed to a parent organisation.
Persevering here, as we all do!
Warmly
Kevin
xx
Kevin where do you like? We are very lucky with the care agency, and the DN they are so good, I am blessed xxxx big hug Kevin I think you need it xxxx
Kevin
Does your local council have carers for those who have just come out of hospital? lt's called the Reablement team here. They come into a home for 6 weeks. Apart from that they only usually step in in crisis! I had to call them when the carers we had refused to lift G's feet as one of them said she had hurt her back! So they stood there watching and I had to do it! One night was enough and I rang the council. They were shocked and sent the reablemen team in.
They were here until my husband went into the Care Home for a week but he's still there as he got pneumonia after 24 hours!
Now we have got CHC but they are refusing to allow him to go to the Nursing Home we had chosen. The manager at the Care Home is off again tomorrow so has told me to ring the Nursing Home myself and see if they will take him. It is the same firm that runs the home he is in now so she could have made the call for me? She had been encouraging me to send him there but CHC have said it's too expensive!
I want him to be near me as I don't drive but all 4 of the homes they suggested are 2 bus rides away! I also want him to be somewhere that they have had some dealings with Parkinson's. It's too much to ask for someone with experience of PSP? Two of the homes have bad CQC reports too! So really I only have 2 places to look t. One looks quite small and probably won't have much experience so that leaves one in reality?
Really feel like I am letting him down.
Sorry for offloading onto you! Started off with a maybe suggestion too!
Try the council. Try asking the local hospital what they would suggest? Tell them you will both end up in hospital if you don't get help? That might be true too?
Take care Kevin.
Marie x
Thanks Marie
Our problem is that all of the agencies here are at capacity. Two are hoping to take us on mid to late Feb.
We could get respite care... But that is too much at the moment.
It was all put into the hands of a CHC manager Monday morning. But without care agency capacity there is little they can do. I don't want to involve the Social Services. Apart from the fact that they would use the same agencies it could lead to moving across to means tested care.
Liz is behaving 'better' this last couple of days. The actual care work is not to hard at the moment. I just need time off. I will go to the voluntary sector for a sitter if it does not resolve soon.
The problem with CHC is that you are not allowed to top up the fees. NHS must provide complete care or nothing. However find out what the CHC is paying in the current home and have a word with the nursing home you like. The nursing home you like might be willing to bill CHC for 'basic care' and let you buy the 'extras' to make up the difference. There is a big wink here. It is done not infrequently.
Thanks for coming back.
Hugs to both of you guys too.
xx
Oh no, Kevin!
I assumed getting CHC was the end - not on to next stage !!!
Good luck. Hope Liz behaves. I also find the need for a break much more than assistance. Just not to be " on alert "
love, Jean x
They did something quite clever - they awarded it and then didn't give it - quite hard the challenge! lol
Its all gone up to a manager now. The local hospice has taken up cudgels on our behalf.
We will get there!
Love
K
xx
Jean
When you get it then you have to hunt for a Nursing Home! You get about two weeks or so I am told! I don't think they are going to pay us CHC going back to September which they should do. I have also had NOTHING in writing! Is this normal does anyone know?
Marie x
Hi Kevin, Steve had some one from Marie Curie come in for two hours a week for a couple of years. It's part of their be-friending service. Unfortunately it's not all over the country. They come and talk to you both, find out what Liz likes, hobbies etc., and try and find someone that fits the bill. Steve had a lovely man, who loved watching sport. Found out he also liked playing Backgammon. So they played every week, got to be quite competitive! Ring them up and ask. It's better than nothing.
Lots of love
Heady
Kevin
Get in touch with Carewatch. They gave me a 3 hour break twice a week! I could actually have done with it all one day! However it was very welcome. Some days I went back to bed as I was so tired! Sometimes I had a shower and washed my hair! Do you think people would actually believe that's how bad things get? Try them Kevin. You need a break of some sort.
Have you got a Hospice near you? They do daycare. My husband went once a week and loved it. He didn',t want to go at first but you can only go for a certain number of weeks. He was very upset when he couldn't go anymore as he had made new friends there. So if your wife goes there prepare her for that happening?
Good luck to you both. Do you think we really are the invisible people? How do we change that?
Marie x
Thanks Marie
Age UK are big on respite here. I am going to call them tomorrow.
Thanks for the push - I was in a rut on that one.
Kevin
x
Kevin
Do they charge? They seem to have become very money orientated. However the CHC should pay for this surely? Ring them and ask? Sorry for nagging but you really need a break. Where do you live by the way that things are so bad with carers? The ones here were a bit of a mixed bag so you are unlikely to get a choice from what you say.
I have been given a list of 4 Nursing Homes. 2 have bad CQC reports and I have told them I won't consider them. The other 2 are OK on paper but 2 bus rides away! Was planning on going to see them tomorrow but spoke to CHC today and was told not to go to one as it's too far away but to go to one of the others! I am not happy as it one of those I had rejected. Feel I am really being messed around.
Marie x
Hi Marie
Look further up this thread, hang on... 9th post up. It might be useful to you. Loopholes.
I have an admission to make... I used to be a clinician in the NHS. I'm fairly good at knowing where to push and how. Though your advice is sound.
Yes, Age UK is terribly commercial now. We were told about them today by an OT. Apparently they provide a very good volunteer service here. We will find out. I'm telephoning them tomorrow.
We have a number of options for 'sitters' I just haven't felt the need to go there until now.
Yes, CHC will pay for it, but the CHC and us is a totally long story. All about being on the wrong funding stream and more.
There is a complete dearth of carers here, just north of London. Most agencies run permanent adds and interview once a week to keep staffing up.
Having said that right now I prefer to o the care myself than sit not knowing if or when they will arrive. The time is close when we will not manage without them though.
Warmly and wishing you the best
Kevin
x
Kevin
Well now I know why you always seem so calm when I would be tearing my hair out! E need you and anyone else with insight into the NHS/CHC business. Every time I have phoned CHC I get a different person! I haven't had anything in writing about how much my husband has been granted. I was told it will bevat least two weeks as the have such a backlog! Yet I am meant to make a decision before then?! Shambles and disgrace doing to mind.
I used to be a Non-Exec on the board of our local hopital but everyone has gone now. Onto greater and bigger things if you look at their salarys!! I also sat on a committee with the CEO of the CCG. Tried to get to talk to her last week but she was in a meeting!! She is probably still there?
Marie x
I take my hat off to you Marie
Such wonderful things you have done.
CHC is in a mess. So to is the Home Care industry.
Good luck with it!
And yes, she is probably in the "Stay in the meeting, meeting that way we don't have to go to the approving CHC funding meeting."
How could I be so cynical.
Kevin
x
Kevin
I don't feel like I have done anything wonderful. Far from it! I became a Non-Exec as I supported the NHS and wanted to have my say! A fat lot of good that did? When they started to raise expenses I felt deeply uncomfortable. So after 7 years I decided to get out. However I still wanted to have my say! Nothing has changed has it?
So I sat on a Health and Well-being Scrutiny committee. Hence the contact with the CEO. Only a few months ago the CCG made it clear they were running out of money. So yes my husband got CHC but the choice of Nursing Homes are dire!
Went to one that has a Good CQC report but my husband would be in a room that is so small we would be lucky to be able to sit with him. He would also be between the dining room and 2 sitting rooms! Not a great place to die? To add to it his bed head would be under the window so he would have a great view of the wall in his room!
The other one I was advised to visit was closed due to sickness and diahorea! It got a CQC report saying Overall requires Improvement! I had refused it but a bloody woman from CHC rang me and told me to go and NOT to go to the one we intend to go to on Sunday! One of the reasons for the bad CQC report was lack of cleanliness leading to Infection! Now seems they haven't learnt anything? The other they were using pill crushers for more than one patient! Great?
We have one left to visit which got a Good CQC report but it's the furthest away and we are not supposed to go but are! I don't drive so was desperate to get him nearer home. However was told I would have to pay for him to go to one nearer and I can't afford it! The final one we were offered has an Overall Inadequate CQC rating! I refused that too but they tried to persuade me to go to visit it. I said no. So CHC is not the answer to our problems. It would be useful if there were staff who understood the CQC reports and what they mean however...for starters!
The Care Home want him out. They say they are not a Nursing Home which is a fair point but they knew what was wrong when he went there! From my point of view it is really stressful trying to get lifts to see him. I can only see him 3 times a week and worry myself sick the rest of the time. He is going downhill as you can imagine but the thought of him dying in that little room if we move him there is almost too much to bear. He actually wants to die in the Hospice but I was told by the SocialWorker there that it was unlikely they would offer him a bed as he no longer had contact with them!! How can he? He can't use his wheelchair now! Feeling desperate tonight to be honest.
Marie x
Think I might like to still be throwing the meals in the bin right now,maven tho it made me scream and shout xxx
Sorry Geoge .It was before my time. I saw a post referring to it some time ago have no idea how it worked. It was an awesome idea. We should notify our ministers of health and politicians. That care givers have had it and are screaming around the globe. An article in Parkinson's PSP news letters and locaL papers and news stations . That would get some awareness out there. I am not well myself and do not have the energy to pull something like this off just like most of you I have reached my limit. I wish some of associations would organise something like this. Our Parkinsons association gives tips and writes articles on exercise and boxing to help those in earlier stages. No one wants to talk about late stage difficulties care givers and their partners experience. I guess it would be a real downer for those just starting on this journey. It seems best just to ignore us.
Hi Noella, nobody is ignoring you on here! The late stage of PSP is very hard, mainly because the realisation of what you have been fighting against is now staring you in the face. In the actual care part, Steve's final days were the easiest through out the whole of his journey. I spent six years fighting PSP tooth and nail, only in those last four days, did I give up and accept what was happening. I Let others take over the caring role, so I could go back to being Steve's wife. He died with his loving wife cuddling him, not the tired frazzled Carer that I had become.
The hardest part of PSP is the middle, when all symptoms are present, the falling, the start of the incontenance, speech going, swallowing problems creeping in. This is when the full care package should be in force, not at the end, when lots of problems have been and gone.
My advise to you now is, if you are getting over tired, you need help NOW! It's not a failure on your part. PSP can't not be coped with single handed. Don't let it take complete control of your lives.
Lots of love
Heady
Remember it well. Started off by being a bit of banter between "Georgia Peach" (love it George!) NannaB and myself, and grew into a big event.
Lots of love
Heady
i agreed a ;arge screa,m i s] needed
when iwill it be¿?
lo.jill
xxxxx
What a good idea! I'm up for a good scream and global hug anytime! X
Last global hug was before my time, but I'd like to join in this time ((((())))) xxxx
Hi everyone count me in. A good scream helps to relieve pent up stress. Love you all and lots of Hugsxxx. Teeker
Noella
Thanks for the unintended laugh! Georgia Peach...Georgepa will never live it down! Made my day! Doesn't take much does it?
Marie x
IA GTR EE I MISSED THE LAS T 1 AS I FELL OVER TRHYGIN TO GET OUTSIDE
SO ANTOHER ONE IS NEEDED
WHEN AND WHERE??
LOL JILL XXXXX
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