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PSP Association
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Just when things looked ok!

Life had settled down in the time since Bill came out of hospital but yesterday I knew he was not right. He was even more sleepy and so difficult to rouse. At lunchtime the carers dropped the bombshell, Bill was passing blood in his urine. Oh Shit! He is not going into hospital again phone 111 they send a lovely pair of paramedics who agree he is better off at home with me. Emergency dr. Comes and prescribes antibiotics. Try to get as much fluid in as possible.

Bedtime I have a brainwave and push my little bed up to Bills hospital bed and after adjusting the height we can sleep close together.....If he goes in the night at least I will be near him......... Wake up and it is getting light! We have slept until 7.30! I can hear Bill snoring so he is still here! As usual he has his legs on my bed and is sleeping diagonally across the bed. I need to move him to give him his meds and a drink . Manhandle Bill wearing my usual nightwear, nothing! He thinks this is great. Get more smiles and giggles than I have heard for ages. Manage to get the slide sheet under and tug him into place. More giggles as he touches my bare body. He is like a new man. Took his meds , ensure and a cup of drink and is now fast asleep. I believe in the power of love!

Love to you all. Kathie xxxxxxxx

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It's tremendously difficult, Kathie, even with a loved one. I am in my final stages and with the Syndrome have just lost two days on my own. Hospitals and institutions don't work for this although PSPA are brilliant. I hope you survive intact. I saw my father go through this more than 30 years ago when PSP was thought to be Munchausen's syndrome but you and I know that was rubbish and it was more than Parkinson's, with which I, like everyone else was misdiagnosed. I hope you have a happy Christmas, love Tim. PS Fluids are certainly important but don't overdo it

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Kathie glad all was ok, I think you are right about the power of love, these bloody infections are a nightmare, George had one on Friday, doctor said he would have to go into hospital , but when he saw my face he said lets see how he goes.

Sending you both a big hug. Yvonne xxxxx

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So do I believe in the power of love. My darling can't do much at all but he still caresses me when I'm struggling to get his hoist on or get him dressed. The other day I said I hoped he didn't do that to his carers when they got close and he just did his humming laugh. I haven't had any complaints yet though.

Long may That power last.

X

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I have told him he can forget my name and who I am but he must not forget that I love him

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That is the same thing I told Charles. He seems to be in his last few weeks and when he is awake, he tries to push me away, I think he doesn't want me hurting and that would fix it. I told him to knock it off, I wasn't going anywhere!

Alma xxx

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GOOD FOR You ALMA

LOL JILL

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i AGREE WITH YOU NANNAB]

LOL JILL

:-)

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That is great! Love is very powerful.

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Ooh la la girl...now that's how you "dispense the medication!"

AVB ;)

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The power of love is a positive emotion. Must admit i can imagine the cheeky grin and twinkle in in Bill's eyes as nurse nudey gave him his medication. Keep up the good work. Janexx

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Better than any medications

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A lovely account, thank you for sharing. X

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How blessed you are to still have his interest and love.

My Joe thinks I am his hired caretaker and not his wife of 54 years.

Yesterday, while all romantic he proposed, and said he loves me and is going to divorce, the bitch, his wife. (me!)

No matter what I am told about the brain and it miss firing at times....this stuff hurts more than I can bear and hard to get anyone to understand that I have disappeared in his eyes and heart.

I am so sad.

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Oh, that must feel just about as awful as can be. I understand that just has to hurt terribly. Words matter, no matter how we may rationalize them

But perhaps you could try to imagine that this behavior isn't as personal as it appears. Remember "The Man Who Mistook His Wife for a Hat"? The brain is such a strange place. And when he sees YOU, he says he loves YOU, whatever the phantasm of "his wife" his delusion has created.

Easier said than done, I know. Sorry this is such an inadequate response. You must be very lonely, seeing yourself disappear from his view. Such grief. I am sorry you are going through this. Love and Peace, Ec

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Noteasyrc all i can say about his proposal is he may not realise you are his wife of 54 years but he must love you because he wants to marry you. So try and think of it as a compliment (i know its hard) and i do know that most people that have neuro problems live in the here and now.

Try not to be sad but relish the thought that he does love you for the person that you are. You may still have all the memories of the last 54 years but he hasn't. Janexx

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Sorry this is happening to you. My Charles has glared at me, dismissed me, and told me I was fired. But now that the end is near he is trying to push me away in a loving way. So hang in there and watch for those little hints of love!

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Thanks for the pearls of wisdom!

Warm regards

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Your Love truly shows, and Bill feels that.

{{{HUGS}}} to you both.

Alma xxx

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