I fear the worst

[Opope]

Mum has been in the nursing care home for about 3 weeks now. Its beautiful.

I celebrated my 50th birthday on Thursday with mum and dad at the home. Mum was in good spirits, alert, eating (pureed food) laughing and occassionally trying to talk.

On Good Friday dad said there was something different, something was wrong. He called in a panic. I went to see mum over the weekend and things have changed. She is sleeping most of thw time almost like she has been drugged. She is refusing to eat or eating very little. The only thing she is saying is yes or no when she can be bothered. She keeps her eyes closed all the time even when its clear she is awake.

I fear the worst and no one seems to be able to say if this is the end. The nurses have stated all her vitals are fine and she has no infection.

Im scared....

[Yvonneandgeorge]

Oh dear Opope this horrible illness is just too much to cope with, look after yourselves, my thoughts are with you, Don't know what to say, just hope things get better for you Yvonne xxxxxxxxx

[jillannf6 in reply to Yvonneandgeorge]

HI OPOPE

I AGREE WIHT WHAT YFONNE HAS SAID ABOVE - IF IT SI THE END - TRY AND BE STRONG FOR HE RSHE WOUDL WAN T HTAT - BUT IT IS NEVER EASY I KNOW

LOL JILL

HUGS AND XX TO YOU AND ALL YORU FAMILY

[Opope in reply to jillannf6]

Jill

I feel like Im just teetering on the edge at times. Trying to stay strong for both mum and dad. Its sooo sad. Why no cure?

[Opope in reply to Yvonneandgeorge]

Thank you soo so much for your words of support

Opope

[Heady]

Sending lots of love and hugs

Heady

[Opope in reply to Heady]

Thank you x

[jillannf6]

R U CHRISTINE??

or not....

lol jill

HUG SAND XXX TO YOU ALL

[Opope in reply to jillannf6]

Jill. No sorry im not

[peterjones]

hi opope I do not your mum is near the end mate I think she is genuinely tired out from trying to hard to talk I know I cannot solve your mums problem but I can say about the eyes she probably finds it more comfortable to leave them closed than to keep on trying to force them open mate I know I have a job to keep mine open when its the end of the day and im trying to type

an email I have to push mine up now so I can carry on typing when I have had friends around they see me with my eyes closed and say hes tired we had better go but I say to them its only the psp again and the muscles in my eyelids so don't be scared about your mum mate just tell her you love her and carry on as normal mind you matey its a good way to get rid of someone if you dont want then to stay say hi to mum for me take care peter jones queensland Australia psp sufferer who is going through the eye problems now

[Opope in reply to peterjones]

Peter

you've no idea how much your mess has made me smile and laugh at the end!

It all makes sense

Thank you x x

[peterjones in reply to Opope]

well opope I am just glad that you were able to smile and laugh at the end of my em that's what I had hoped for now comes the hard part matey YOU HAVE GOT TO KEEP IT UP BECAUSE THAT WAY YOU WILL BE CHEERFUL ALL THE TIME === WELL MOST OF IT SEE YER

TAKE CARE AND DONT WORRY CAUSE WORRYIN DOES NOT SOLVE ANYTHING IT JUST BRINGS YOU BACK TO THE SAME THING YOU STARTED WITH IN THE FIRST PLACE SO ALL THE WORRYIN WAS FOR NOTHING IF YOU SEE WHAT I MEAN BEST WISHES TO YOUR MUM MATEY PETER JONES QUEENSLAND AUSTRALIA I CAN ACTUALLY SEE WHAT IVE WRITTEN WITH THIS BIG PRINT MATE ITS GOOD ISNT IT

[Opope in reply to peterjones]

HI PETER

THANKS SO MUCH FOR THE MESSAGES I LOVE YOUR SPIRIT.

MUM HAS DETERIORATED EVEN MORE AND WE HAVE BEEN TOLD TO PREPARE OURSELVES.

SHE HAS STOPPED SAYING ANYTHING RECOGNISABLE WHEN SHE IS AWAKE WHICH ISNT MUCH. ITS ALMOST LIKE A COMA LIKE STATE SHE IS IN. SHE IS REFUSING FOOD AND THE ONLY THING SHE SEEMS TO LIKE IS ICE CREAM. SHE IS ALSO REFUSING HER MEDS TOO.

HER TIME IS COMING ALL I CAN HOPE IS THAT IT WILL END SOON.

IVE OBLIGED WITH CAPS....HOPE IT HELPS.

[peterjones]

hi opope its me again don't forget that the light hurts our eyes as well maybe some dark sunnies sorry mate sun glasses will help her I hope so see yer peter jones queensland Australia psp sufferer by the way how old is your mum take care matey

[Opope in reply to peterjones]

So mum is 83

She was diagnosed about 6 yrs ago with vascular dementia. She had had unexplained falls. Then her mobility went initially her left side and at the same time her speech. Along with other psp symptoms but we were being told it was related to the dementia. Just before christmas mum was rushed into hospital with pneumonia. She was tgere for 10 weeks and luckily a neuro specialist who knew about psp saw her and finally we got the prognosis. It was actually a relief to know.

Since discharge from hospital we have had carers at home but dad just couldn't cope and mum needed 24hr nursing care.

She is completely immobile, double incontinent, her speech has all but gone. The worst is her swallowing. We made a conscious decision to risk feed pureed food...we want mum to have at least one pleasure (the alternative a peg feed direct to her tummy)

mum has had the issue with the light for years now. So we always have her in a darkened room and she has sunglasses on should the nurses need the light on.

Its been a tough journey and so unfare

opope

[cabbagecottage]

do u all bathe your eyes Regulary with a solution of mild soap with a small drop of baby oil . when the eyes close all the time they can become crusty which then makes the itch . if you rub them as u are bound to do they become very sore , I do John a few times a days , also put cold tea bag compresses on them . it at least makes them more comfortable for him .

I similarly sponge his face and neck and back they can become very itchy and greasy . can anyone relate to this .

[peterjones in reply to cabbagecottage]

hi cabbage cottage thanks for the tips about the eyes I don't know about the tea bags though I have visions of walking around with two tea pots hanging down from my eyes mate and is it LIPTONS OR IRISH BREAKFAST TEA BAGS MATE NO SERIOUSLY I WILL GIVE IT A GO THATS BETTER NOW I CAN SEE WHAT IVE TYPED MATE IT MAKES A DIFFERENCE WITH YOUR EYES OPEN DOESNT IT AND YOUR RIGHT NOBODY GOES UNLESS ITS THERE TIME OR AS YOU SAY ITS NOT OVER UNTIL THE FAT LADY SINGS I USED TO BE A SINGER AND COMEDY MAGICIAN NOW THE LAUGHS ON ME MY FACE AT TIMES LOOKS LIKE I HAVE JUST COME FROM THE MORGUE BUT I CAN STILL CRACK A SMILE AND A LITTLE LAUGH I SUPPOSE THATS BETTER THAN LOOKING MISERABLE ALL THE TIME WHAT SAY YOU MATEY HOW IS YOUR OTHER HALF DOING OK I HOPE MY COMPUTER HAS NEARLY HAD THE RICHARD SOME LETTERS WORK AND SOME DONT SO DO NOT WORRY ABOUT MY SPELLING MATE ITS ONLY THE PUTER

WELL MATE I WILL SAY SEE YER TAKE CARE AND YOUR OTHER HALF MATE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER AND NOW TEA BAG MERCHANT GOOD JOB I DONT DRINK COFFEE MATEY

[cabbagecottage]

During and after any episode ! I think we all try to prepare ourselves for the inevitable but no one goes before their time , what's the saying its not over until the fat lady sings . mymother lingered for a very long time .