Well, I'm back!

[Heady]

Hi, thank you all for your good wishes and support for me, during my week off. For me it went really well. Spent the first couple of days at home, on my own. Felt I didn't want any company. Just sort of existed, didn't do much, floated around in this strange, quiet world. Was very good, didn't hit the bottle or spend any time mopping around. Then I joined my sister and we went to South Devon for a few days. Great fun, plenty of walks on the beach with the dogs. Lots of grown up visits to the pub and restaurants. Came back feeling rested and sort of normal!

S, well, I told you that he fell within hours of being there. Of course he couldn't just leave it at that, tried again and this time managed to break his elbow!!! Thankfully, common sense won, they didn't send him of to A & E, in the evening, as we all know, that ends in being admitted! My daughter took him the next morning, then again the following day! Poor girl has spent most of the week running around after him!!!

Now home. Haven't had a word out of him yet! Has just sat in his chair, mostly sleeping. Has barely touched his lunch, or drink. Really don't want to start nagging again, just yet!!!

Don't know if the home was Ok, or not. My daughter said she was warming to it, by the end, but nobody seemed too bothered about him leaving. It was just me going in and collecting him and waking out! I'm sure they were glad to be relieved of their responsibility, lets face it, it's not easy looking after a PSP patient. I do need to book him in somewhere again soon. Having some work done on the house, so he will have to be out of the house. Still I suppose, he will lets me know if it's a big NO NO, to go back there. Feeling quite uneasy about how I can keep on caring, knowing that the so called professionals can't cope! Does it make me super human, or just a mug?????

Oh well, I hope this rather strange floating feeling lasts a bit longer, no doubt, my backside will have a huge bruise on it, before the night is out!!!!

Lots of love

Heady

[NannaB]

Hi Heady, it's good you had a lovely time and were able to do what you wanted for a few days. I'm not really surprised S fell again but sorry it happened. There are so many residents to look after in care homes, staff can't possibly do the same as we can and give the amount of attention we do. I hope you can keep on caring. When C returned from the care home he went to in 2014, with me and our son taking him out every day ( in Suffolk from Kent) he was very depressed but did cheer up a bit after a while. He had slipped a bit further down the slippery slope though. I think he stayed quiet to make me feel bad about leaving him there over night....it worked.

I hope you soon get back into the swing of things.

Take care.

X

[abirke]

Hey Heady,

Glad to hear you had some alone time and then some good time with your sister. It's true that no matter how "professional, " until they get used to the patient there's gonna be "situations" So he may not like it there and you might have to try another place, but giving it repeated tries leads to greater comfort.....she says knowing she

ll probably never leave her husband anywhere and just whither away.....I tell you now that Bruce doesn't eat, nor do I. Great way to lose wt ....if you have to.....anyway

I am glad you're back...what's up with your house, may I ask

AVB

[Yvonneandgeorge in reply to abirke]

Hi Heady so happy you had a good time, glad you are back refreshed, it is hard getting back into the swing of it after a break, but I am sure you will, you give so much good advice, you need to take some of it on board for yourself.

The professionals I think some of them think we are wonder women and men, they need to take a bit more time looking at how we are coping, at times not very well, but we are saving them millions.

My daughter and granddaughters, took me out for the day, care all in place lovely lunch up in London, on to a makeover, then dinner, then on to the theatre, to see kinky boots, had such a lovely day feeling good, not sure for how long.

George was getting on so well last week, it has all gone down hill from Friday, no life in him, keeps coughing, not talking much, he looks so miserable, try to get him to walk a bit, he can't just wants to be in the wheelchair all the time, I look at him and feel so sad, what sort of life is this for people with PSP? He keeps saying he is going to die soon, so hard dealing with all we have to do, feel so alone sometimes.

Well heady once again welcome back, and hope the building work goes ok.

Yvonne xxxxxx💐💐💐💐

[easterncedar in reply to Yvonneandgeorge]

Wonderful to hear you had a good outing with your girls, Yvonne. I hope the good effects carry over for a while. We just saw the movie, kinky boots. It was fun. I bet the show was fabulous! Psp keeps us all on such a roller coaster of good days and bad. So hard to adjust, day to day. I'm sorry you and George are at a low point after one good week. I hope things turn back up for you. Hang on to those good times. Best, ec

[peterjones]

GOOD ON YER HEADY PETER JONES Q.L.D. AUSTRALIA PSP SUFFERER

[peterjones]

AND GOOD ON S FOR TAKING NOTICE OF YOU AND GOING IN THE NURSING HOME\I HOPE YOUR ELBOW IS NOT GIVIING YOU TO MUCH TROUBLE MATEY

STICK WITH IT MATE YOU CAN DO IT PETER JONES Q.L.D. AUSTRALIA PSP BLOKE

[peterjones in reply to peterjones]

HIEASTERNCEDARANDMRBIG C HOWS IT GOING OK I HOPE MATEY AND THE WEATHER IS KIND TO YOU WELL WE HAVE OURCYCLONE SEASON THROUGH UNTIL APRIL WHICH CAN BE A BIT OF A NIUSNSE THERE IAS ONE ON ITS WAY FROM FIJI WITH WINID GUSTS OF UP TO 300 KLMS PER HOURB AND IT IS SUPOPOSED TO LAND ON FRASER ISLAND WHICH JUST OFF OUR COAST LINE UN[NLES IT TURNS AROUND ANDBUGGERS OFF SOMEWHERE ELSE WHICH WOULKD BE VERY NICE I HATE THE WINDS Here very dangerous was mr c birthday close b mate or have I gone completely bonkers this time I thought my birthday was the other day must have been a senior momentm or psp kicking in iprefer the senior moment myself well you two cedars take care see yer buddies peter jones qwueensland Australia psp bloke

[easterncedar in reply to peterjones]

Hi, dear Mr. Jones! Good to hear from you! Your cyclone sounds very scary. Be safe! Keep your roof on, won't you? As for weather here, well, we are having some, too. We drove up to the mountains last night, roads all clear and very little snow left anywhere. Easy driving! It started snowing around midnight, 8 hours ago, and it's still coming down hard. We may have 8 inches now. It's very pretty, but I don't know how we will get out tomorrow if this keeps up. The weather forecast was for some light rain! The water pipes are still frozen, since last week when it hit minus 33C here, so we can be happy at least there's fresh snow for us to melt on the wood stove, so I can do the washing up. Mr. C has been very troubled by coughing, choking at night. He uses a suction machine, which very restfully sounds like a jackhammer, not much quieter than the coughing, but it helps. We are going to enjoy this snowed bound day, sitting by the fire and dozing if I have any say. I'll let the shoveling wait for a while, but I better get up and get the coffee on and the fire going. Fill the bird feeder. Keep in touch, please, Mr. J. I'll be looking on the news for word of your cyclone, but will be glad to hear from you directly. Mr. C sends his best regards. Love and peace, ec

[Hidden]

Heady I just have to comment even though I seem to be succeeding in weaning myself off this site, in the main. However, your post just reminded me so much of the wonderful unexpected holiday I was given as a Christmas gift. I too floated about my luxury hotel for three days eating, sleeping and drinking, all though not too much of the drink. Then two days with BF in Istanbul - we ate lunch out but had takeaways delivered in the evening which we ate watching DVDs of old rock concerts. The whole thing was magic and, for me, convinced me there will be life after PSP. Now four weeks since C departed I feel I am starting on the road to recovery. Last week I started a flu-like illness which was awful but which I had been expecting as body coped with de-stressing. That has almost gone now and as I write daughter is painting room which has always been guest room here but will now be my bedroom. She and I both agree we need to get the house in order again asap. I will be downstairs, she will be upstairs as will people who come to stay. Seems like a sensible arrangement as we keep such different hours. Weather is glorious, temp in mid 20s so, as soon as I finish this, I am off to start attacking our very overgrown garden. Making C's garden glorious again seems like the best memorial I can make for him. Keep plodding on and know there is life after PSP. P

[easterncedar in reply to Hidden]

Wonderful to see you carrying on and beyond, pattz. Your daughter sounds like a very good un. Wish I could help with your garden. The perfect memorial, indeed. Best, ec

[Debbieann]

Glad u enjoyed your break and re charged your batteries xxx

[MaddyS]

Glad to have you back well rested. Hopefully the good feeling will last a good while.take care, maddy

[Mnd0vrmnky]

Happy to hear you got a break in heady

Not so happy about the broken elbow

My dad has started to go to the gym twice a week and the guys there seem to be on point. They get a bit of fear in their eyes when he goes to stand up and come rushing over. I imagine in a care home they have their hands full looking after so many ppl.

[Katiebow]

So pleased for you that you managed to get away and enjoy a more normal life for a short time, hope you feel rejuvenated for a while. Bet it must be hard returning as you know exactly what is waiting for you, hope you manage to fit in regular breaks to help with your mental be physical wellbeing. Sorry that S managed to break his elbow and that it hasn't caused him too much pain.

What work are you having carried out at home, is it to help with S or just general improvement. I keep thinking must have a wet room installed downstairs as Ben can still just about managed to get upstairs but is deteriorating. He's not keen to have it done as he thinks he will always manage the stairs although he really knows otherwise.

Enjoy your 'floating on air' and long may it last.

Kate xxx

[Doglinton]

Welcome back, Heady,

Hope reality gives you an easy return. Pity about the elbow. You could all have done without that little extra drama !!

love, Jean x

[Auddonz]

I need some time now but there is no way for me to get it.

[peterjones]

HEADY GOOD OLD SAYING MATEB WHERE THERES A WILL THERES AVWAY HAVE A GREAT DAY MIRS H PETER JONES Q.L.D.AUSTRALIA PSP CHAP I HAD A GREAT DAY YESTERDAY MATE I HASD TERMITE TRACK PUT DOWN ARIUND HEHOUSE COST W2500 DOLLARS THEN WENT TLOA SPECIALIST FOR \SLEEP APNEA TOLD MDE INEEDED ANOHER MACHIIE ANOTHER TWO AND A HALF THOUSAND DOLLARDS THAT NIGHT OUT LOOKS FURTHER AWAY THAN I THLOUGHT MATE NOLT LIKE A FRIEND OF OURS WHO BOUGHT A TICKET IN HE KENOHE JUST WON A MERE TWO MILLION TWO HUNDRED AND FIFTY THOUSAND DOLLARS MATE NOW THAT WOULD HAVE BEEEN A NIGHT OUT WOULDNT IT MATEY AND S WITH HES BROKEN ELBOW AS WELL SEE YER HAVE A GOOD ONE PETTR JONES Q.L.D. AUSTRALIA PSP BLOKED

T IY

[Heady in reply to peterjones]

Hi Peter Jones, lovely to hear from you. S is surviving his "little" mishap!!! Lucky friend! Wouldn't it be nice to suddenly come in to that sort of money. The only trouble with us is, our first thought would be, where can we go? now the answer would be, nowhere!!! Hey ho!

Keeping fighting the good fight. Love to Mrs Jones! (And you, of course!)

Lots of love

Heady

[peterjones in reply to Heady]

thanks for mail heady although with that kindof money youcouldafford toget someone in full time couldn't you and bugger where you liked mate I suppose or help the kids out although i do not thimk they need much helping these days I have one son whohas a advertising business and the other son has just had built a big house with 5 toilets and on suites and cloakrooms etc that just leaves my daughter who is a dam good worker and battler well mate that gives sa good plug for my kids who love very much having said that iwon four and a half thousand on the poker machines two saturdays ago which i shared out to the family I won the jackpot with 15 dollars to play with so I was welll pleased even though my facial features do not show it now I think thaty a great shame with no emotion to show but still breathikng and upright some of the time so see yer matey regards to s for me peter jones q.l.d.australia

by the way I do not know why he built a house with 5 toilets and on suites

perhaps heis going to fill iit up with people who have psp mate

see yerr have a good one matey