Leading up to Christmas I wrapped F in cotton wool, so paranoid he'd have a fall prior to Christmas, which I was looking on as probably our last 'normal' Christmas, and looking forward to family Christmas at my daughters. Well....
On the Wednesday/Thursday we spent 24 hours without electricity, the being the power supply to my house, they dug up my front garden to find the fault was in the street, the neighbours all kicked off because of the disruptions the repair caused them(considerate neighbours)
I was then keeping my fingers crossed I could get through the next 72 hours smoothly and sit up at the Christmas table that my daughter had set so beautifully,
Christmas Eve F couldn't clear his throat, I've had to call 111 after 10 hours a doctor finally came out at 9.30pm and said he had a chest infection and gave antibiotics. We made it to my daughters, F didn't want to sit up to the table, then he wanted me to sit on the settee with him to help him, well at least I was in the same room as everyone else! He got slowly worse and I just about managed to get him home. I couldn't risk taking upstairs to bed so we slept downstairs.
Boxing Day he was a touch better, my other daughter & son in law and new granddaughter came to lunch, I did get to sit at the table that day, although F didn't want to, 2nd night on the settee.
Today I've had to call 111 again, by the time I'd collected what they'd prescribed he'd gone downhill so much I've had to take him to A&E, he is very poorly I don't know how I got him into the wheelchair, he's been admitted, chest infection and dehydrated, just got home at 3.40 am, on the upside at least I get to sleep???? In the bedroom. Will have to go back to the hospital in the morning as don't think the ward have a clue about PSP
That's why I don't say happy Christmas anymore!
Oh well that's my story, thanks for listening
Lots of love
Debbie xxx
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Debbieann
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Jane, I just wrote basically the same thing as you ....never expect a good day on a special day....I love your dr.....now that's a man who understands the needs of his patients.....
Gp didn't know jack s**t about psp but did understand about infections and timing so was happy to do a script for us just in case. Saved time effort and a trip to the hospital. Jane xx
I ordered penecillan for a possible chest infection I thought dad (might) have on 23/12, I've not used them yet.....but that's my plan now too, have emergency meds in where possible x
Our gp wouldo always trust my judgment so was quite happy to oblige with the script. Will say only keep one course in reserve or it could go wrong. What I used to do is when I started on the emergency supply order the next lot. Jane xx
Well that just sucks doesn't it....I'm sorry Debbie. Is your husband in the hospital or did they give him a handful of pills and say "be warm , be healed" Trying to make one day a perfect day is like trying to hold on to an eel in or out of water.....it ain't gonna happen. So what now...well be ready for a good day cuz they will happen, but probably not when you are absolutly exhausted or when it's someone elses day.....cuz PSP knows how to cut those real short...
Maybe tomorrow (that's the 28th nothing special on that day, right?) or on the 3d or 5th will be a good day......
AVB.. boxing day is the day after Christmas day.. it's started off as the day the servants and tradesmen got their Christmas box (gift). It is a bank holiday in England and we have got 2 of them this Christmas (because Christmas day was on a Sunday). On those days most people don't go to work so it is extra time of work. Jane xx
So on boxing day, all stores are closed and all workers get a day off,,,,and this day always falls on a Monday thru Friday , right? Is Christmas also a closed store day? On the local news, there were dozens of families out on Christmas Day going bowling, the movies and a family play place......I felt sorry for the workers who had to cater to others who didn't want to stay home and "bond"
Hope your husband is feeling better and you are getting rest
In this day and age boxing day is treated as a near normal day.... most shops start the sales on boxing day. The shops are only closed Christmas day I think the whole of England is closed on that day.
It seems to be things like office's and GPS and factory take time off.
Jane xx
Not sure what to write but I do hear You on the Happy part. PSP rules. Try to keep up the fight. Hope the rest of the holidays will be better.
Debbie I am so sorry. Why is it when we look forward to something it never works out? Thinking of you and F. Hope they have his infection under control now? I will be very surprised if they have a clue about PSP! My husband ended up in the Stroke Unit when he got pneumonia. To be honest he was probably safer there. Although they said he was there because there were no other beds in the hospital who knows?
Watch his meds though. My husband's were all over the place and to be honest I still don't think they are right. Think his Sinemet is wrong. I actually don't think he should be on it as it doesn't do any good as far as I can see.
Hospitals can be dangerous places when you come up against people who think it doesn't matter if they change tablets or the timing of them.
Debbie take care of yourself. I hope you have some support? Lots of love to you and your husband.
And if you are not sick going in....you probably will be going out.....I have to appreciate the fact that my drs try to do everything out patient i do believe it minimizes infection Even have a nurse to come out to him to change out his catheter once a month...
Good thing is that you were able to spend Christmas with your family, bad....well you kow the bad. I have a question, why would the hospital send him home with a chest infection??? Especially with the damp cold weather outside?
We'll Debbie, what can I say but sorry to hear you had a rubbish Christmas. typical to get infections when it's the most difficult time to get help. As for the electricity, unbelievable that it was your property, as if you dont have enough on your plate. How is F now, has he responded to drugs.
Ben also didn't join us at the tab,e but sat in his chair listening to us, so sad to see him trying to be part of the banter but not being able to, really brought home how much he has declined in the he past year. I'm guessing it's the same for you too and 2017 is going to be very tough for us.
Keep on keeping on Debbie, not much else we can do.
Dear Debbie my hearfelt prayers are with you and yours. We are struggeling too. I do not know what normal is anymore. It is particularly difficult during the holiday season routine is disrupted , carers are scarce and often new to the clients. Hugs! There may be some brighter moments or days yet. That is my hope for you and us.
That sounds awful Debbie - you poor thing! look after you now please & (hopefully) the hospital will look after your husband. For what it's worth...Dreading 2017 too! X
Ouch not the best Christmas! Hope you can at least get sone sleep whilst F is in hospital. Most of us on this site will be embarking on 2017 with a degree of trepideation what challenges will we face. Hope we all have laughter love and friendship roo.
Dear Debbie, sorry your Christmas didn't turn out as you would have liked. I hope F's chest infection is getting better and you are getting some rest while he is in the hospital. Love to you both. Nanny857xx
Hi Debbie, i was just as nervous about getting my sister in one piece to the xmas table... well we also made it! She eats absolutly everything and lots of it...and never stops eating and drinking. She choked at the xmas table and everyone lost their appetite... so much for hours of cooking. She suffered bad indigestion and kept us up the whole night!
So do not feel lonley... know that somewhere in the world there are people going through the same thing....
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X 
Peace at Christmas.
A real shitty day, literally.
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