Hi everyone, just hate PSP, George is coughing and choking all the time, it is horrible to see, this happening so many times a day. The agitation is back, he is being horrible, saying horrible things to me, when I can understand what he is saying. Transferring is getting a nightmare, so hard. Been feeling really tired lately, not being able to sleep every night, thinking of what is going to happen. Going to have to purée his food now, I tried to give him small pieces with lot of grave, but I think we are coming to a time now when things have changed so much. I suppose I am lucky I have our children, who are very supportive. But I am so tired mentally, keep getting dizzy spells, can't remember when the last time was that I slept all night. Sorry for the moaning but you all understand what we are going through. Yvonne xxxxx
Feeling so tired: Hi everyone, just hate PSP... - PSP Association
Feeling so tired
Bless you Yvonne, it is so very hard to deal with, I'm thinking of you both and send a big hug....
With my love....Pat xx
Thank you Pat, trying to get on top of this depression. How are you lovely lady? Often think about you, hope the children are there for you xxxxx sending you a big hug xxxxx
Thank you Yvonne, I often think about you and George too, I'm taking one day at a time still, I miss Keith so much and it's so hard to accept that I'll never see him again and live my life without him by my side. Hopefully one day we will be together again, that's all I cling on to now. My family have been my rock and support me as much as they can and of course my gorgeous grandchildren keep me going and give me something to live for!
Sending you a big cuddle and lots of love Yvonne....Pat xx
Pat you can only take one day at the time. Big hugs back to you xxxxx
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Hi Yvonne
Sorry to here about George I understand totally what you are feeling but please please try and get a bit of sleep or just to relax as I keep getting told you need to be good for your sake too
If you do have carers leave them to seeing to George and just go chill out of the way
Sending love and hope you can rest which I know is hard
Hugs
Sue xx
I'm so sorry to read this Yvonne, I think of you often!! Psp really does stink! It's so bloody hateful!! Dare I ask this? Is it at all possible that George could go into respite at the hospice for a week? Sadly I think there is often a time when we have to face the harsh reality and think about full time care.....Psp is NOT an easy illness to manage! We are not trained nurses or carers!! You need help urgently and I pray that you get it because I can see you ending up being unwell yourself if you don't get some help and quick!! Huge hugs ❤️ X
Amanda I will be fine, my son is going to give me a break, George has to go to the hospital tomorrow for a CT scan in Cambridge, maybe we wii pop into Cambridge for lunch, just George coughs and chockes people tend to look and i feel George gets uncomfortable. Hope you, your mum and dad are ok xxx.
Bless you both
Mum and I went to see Dad today he was in amazingly good spirits!! It was a good day x
I had to face the harsh reality in January and David went to a nursing home.His care is so good and its all one big family.My health was suffering greatly,so i knew i was at breaking point,no matter how much equipment we had and carers in and out,it was not enough.Horrible decision,butnow i visit alternate days and i am not an exhausted grumpy wife.We can now treasure our time.My health has improved too.Take care and remember to look after yourself xx
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That's good you can never tell with PSP what every day will bring. HVe a lovely weekend xxxx
Sending my thoughts and prayers your way...You never need to say you are sorry...this is a extremely difficult time in your life and allow yourself to vent with all of us...
Prayers to you and your husband
Thank you so appreciate xxxx
YVONNE MY HEART IS BREAKING FOR YOU. I REMEMBER THOSE DIZZY SPELLS FROM JUST EXHAUSTION. BIG HUGS FOR YOU, ONE DAY AT A TIME.
HUGS AND LOVE,
AUDREY
Thank you beautiful lady big hugs back to you xxxx
Yvonne, that is what I am missing, those big hugs from him. Lack of physical contact hurts. Remember one day at a time. BIG HUGS BACK TO YOU. For what its worth, my sanity has slowly returned.
AUDREY ((Yvonne)) <3
Audrey so happy your sanity is slowly returning, big hugs to you xxxxx
YVONNE, ME 2, BIG HUGS BACK xoxo
Yvonne so sorry you are having such a bad time and I know that the coughing and choking is so scary for both. PSP is just relentless and how much I hate it as on this site we all do. You must take care of yourself which is what I am always being told.....so passing it on to you. Jx
Thank you xxxx
Massive hugs to you. What is a full night's sleep hey?! In all seriousness though can you grab some cat naps during the day when George nods off, or at least shut your eyes and try to have a few minutes breather. There is alwsys something to do so I know it is hard to switch off and the worry of what lies ahead is a constant niggle in our mind. Was George assessed for his swallow recently so you know what is needed to try keep the choking at bay?
I can't believe how fast the morning and bedtimes come around each day and in that time it is like a time warp as don't feel like anything happened or achieved.
Hope his agitation subsides again.
Xx
Had the lady in she said there is nothing else to suggest, the next step is the peg, George doesn't want a peg xxxxx
Exactly where we are. I look at him and think its either choking or starving !
Hug together, Yvonne xxx
Yes good point coughing or starving. We are at that juncture
Cuttercat
My heart goes out to you 💛🙏
That is so emotional and hard to have to deal with as you know what ultimately that means. Sending you lots of love xxx
You are so right about the time warp.
Morning to night and back again. 💛🙏
Its hard because when some one is totaly dependent on you, he or she will need you 24 hours and some time that is also not enough and due to which we feel tired and sometime frustrated that we cant have time for ourselves or other things or no time to socialize like others but only one thing that keeps me motivating is when i think what my mom, has done for me for so many years, her sacrifices, her love and care, food which she prepared gor us, the hugs we got when i had fever. so that time i feel, this tiredness is nothing, and even if whole life I have to take care of my mom 24 x 7, i will do it without hesitation, i feel lucky i have chance to take care of her, because some people dont get that chance and regret about it, so with full dedication take care of your loved ones who need you, and think how would be life without them, so be positive and be motivated.
So true xxxx
Yvonne, I can't let myself think about the future or I go into panic. Therein lies madness !!! None of us know.
Chris is on a pureed diet since being in hospital. It has helped reduce the coughing.
Otherwise he is the opposite to George. He can't call me, communication is very difficult. He is calm and seems pain-free. He eats. He is in bed all the time and I question his quality of life. Very sad.
love, Jean xx
Oh Jean this PSP is hateful xxxx
How well I know the difficulties of communication. I really am not sure if my bedbound hubby is pain free . This is a constant worry as there are no facial expressions and I am left to second guess. Really feel that the black hole of PSP just gets bigger and bigger. Jx
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Dear Yvonne, My heart breaks for you. I am fairly new to this site and judging from the many replies you have had you seem to have many people who care deeply about you.
My Husband Barry is not near the stage George is at but with PSP you don't know what's next. My husbands
body has relaxed a lot and he isn't as anxious, depressed, and angry as he was. I rub 1 drop of cannabis oil on his gums morning and night. This past month since using the oil has seen a remarkable change in these areas. Talk to your Doctor and hear his opinion.
Althea 💛🙏
Yvonne, I truely understand how hard it is when the man you have loved all these years shouts how much he hates you with such a wild look on his face! Nothing any of us can say will stop the hurt but just keep telling yourself 'i know this is not him, this it PSP' it helps a lot! So sad to know someone else is going through this too, lots of love to you. I never know what to say when people tell me to look after myself, of course we all know we should do that but its not easy, when your loved one's rolling out of bed or falling you automatically reach out to help and worry about the aches and pains later - am I right! I'm not sure when I last had a full night's sleep either, found Brian at 3.00 am this morning half out of bed with his feet stuck behind the radiator!!! A bit of a tussle but no harm done.
Delighted your children are such a good help. All the very best to you, Lesley x
I hated that lack of sleep stage, couldn't think.
I well remember that stage ! It changes but brings different pains. I get sleep and he doesn't fall now. He is even more lost and even less " him ".
love, Jean xx
Yes stages change so quickly. George has good nights lately with the medication, I just can't sleep myself, I feel tired I lay down and my eyes open up and the sleep does not come xxxx. I am off to the doctors next week xxx
Yes I agree with you, just want to be there to care for them, and protect them xxxx
Hi Yvonne
Your not moaning at all.
You describe where we are at.
The coughing and breathlessness and the distress from it is horrible.
I struggle to make Liz's words out now as well.
I'm emotionally tired as well as physically.
However we have good carers and CHC funding so it doesn't feel so bad. We're not sitting here and wondering if we will get funding and how we will manage... for now anyway.
The transfers are getting harder too. We can still manage with a turning stand, but it is getting harder for Liz to stand on it even with supporting hands.
Just echoing your post really.
At least we are not alone!
Kevin and Liz
(Who is here with me sharing the ideas for the post)
xx
Definitely not alone. Such loneliness for the suffers locked in their body and heartache for carers. Deep sadness all round. Jx
Yes really sad time xxx
Love to Liz and your self Kevin, I think you are amazing xxxx
Hello Kevin, I was wondering how you both are.
We sound as if we are at about the same stage as you are, although B does not have funding. I'm waiting for a meeting with them to explain it all yet again!
B has a peg now but still has 3 bolus feeds as well as an overnight feed. Last night he said, " I've had nothing to eat and drink all day". When I reminded him of all he had had, he just grunted. I think he meant I hadn't given him any fudge to melt on his tongue that day, or tea or coffee- which he mainly leaves. He had had some lemonade with thickener, but had forgotten. Anyone hearing him would have thought that I was starving him. Oh well ! Sending best wishes to you both. X
Get some respite now. Tell the kids to come and watch their dad for awhile....get some sleeping aides from your dr....and when kids are there, take one to give you a deeper sleep...you may have difficulty sleeping the whole night through without a little help....I know that happened to me....You need at least one night off Yvonne.....
I know you know that that is not George talking to you.....I would like to say that it is an over stimulation of the brain that causes the outbursts....but maybe it's an understimulation of another part of the brain which curbs the outbursts...sort of like Tourettes Syndrome.....but its PSP symptom and not about you or even George. So fight fire with fire? how about with laughter or just ignoring it let it roll of your back...hard to do but when we are in the trenches of warfare we do everything we can to survive.....well no guns please hahaha?
I think there are some antidepressants out there that may help both George and you....I don't mean to b e a pill pusher today but maybe that would help too.....
sending you ((quiet restful HUGS))
AVB
Thank you I already take antidepressants and george does also, just feeling sorry for myself on this journey, going to the doctors next week, seem to have a headache every day. Sending you a big hug, how are you doing? Xxxxx
Well Yvonne to answer your question....I've had a few rough moments. I got so excited about watching the eclipse that I had this harsh wash of loneliness or realization that B wasn't there to share it with me....not much his cup of tea he would have liked it but even moreso he would have kept me grounded and I could be happy all over him and he would contain it all sort of like putting an overloaded pot of water into a a bigger pot so it didn't spill all out....I got that same overload the other night when a bunch of us were looking at this old old Bible.....it was so cool.....machine bound but pages not cut to perfect symmetry like they are now days .... leather cover published 1897....And then without I said how B would've loved this and bam it hit me again and in front of everyone I sort of lost it.......and been having dreams about him though I cant remember them when I awaken.....
And I don't know if it's jealousy, feeling sorry for myself or what but when my kids come over (and thank you God that my kids come over) I hear their busy schedules and the fun things they are going to do...and I get sort of depressed....
Oh well next week it will all be different I suppose.....so this is just todays rant...hahahaha
Well goodluck at the Dr's office....a headache may stem from tension in neck and shoulders.....may I suggest massage therpy....it feels soooo good!
((HUGS))
AVB
Dear Yvonne
Really feel for you. It sounds as though So many of our community having a really hard time at the moment. Sending love and hugs to you, Kevin and Jean. I hope you will all find some sleep and the strength to continue this awful battle
Thinking of you all
Tippy
Thank you tippy love and hope you all have a lovely weekend xxxx
Dear Yvonne
Charles is one step beyond George. I've been puréeing for six months. He still chokes and coughs always. Can't stop that I'm afraid.
Hang in there. I hate to say it will get harder but it will. Charles doesn't eat much at all now. Oh how I wish I was pureeing again. So you see we are all sharing the tragedy of PSP. Awful in every way
Cuttercat
Hi tired lovely lady
I tend to be practical with this nightmare we are all dealing with, not only are you coping with caring the scariness of them worsening and how you will deal with that is overwhelming. I am a registered nurse and it scares the **** out of me !
If you are funded get in touch asap with CHC , get longer blocks of care you are still a cheap option.
We found adult services good, not everybody' s experience I know.
The hospice have given Rog meds for night time agitation, they work well. They are in his just in case box, a lovely term for all the meds we may need when things get tough!
Like you guys due to choking we do not eat out, we still go but I am honest with people, say I have fed him and just enjoy being out.
Rog has declined a peg, I totally support him in that but more stress trying to get fluids etc into him.
There seems to be a lot of us out there at the same stage, no speech, choking, no sleep and a crap system, let's start a club!
Keep your chin up , as my mum used to say nothing lasts for ever.
Julie x
Oh Julie, despite the horror of PSP, it's the " nothing lasts forever" idea, that I fear the most! X
My prayers and my heart to you. 🙏💛
Hi all seems like we are all at a similar stage? My lovely Mother cannot walk talk or eat or drink. We have thickeners for her water but it is so dreadful to cope with. I can only take comfort from knowing that she is not in pain. I also take comfort from knowing that we can share here our worries and woes and that others will know exactly where we are coming from. This site is invaluable for me thank you everyone for being here for us all x
I feel my heart breaking when I see how george is, we managed to get him to our daughters house today for a barbecue, he looked so lost and sad, felt like my heart was going to break, he looked so lost. Xxxx
Sorry to hear this,again no words can make it better.my guy is pretty in the same stage,had to take his food away the last couple of days. Insure drinks and ice cream and cake.I wanted to buy thickener for his water but he says No.I'm going to buy it anyways.
Hate PSP.
Hang in .. ((hugs))
Dee in BC
Dee I hate it too, so hate PSP, George is choking so much xxxxx
I think lack of sleep is one of the most stressful things we have to deal with. Coupled with verbal abuse, you are going through a terrible situation. Sending love, prayers and big hugs. X
I agree with that, You must find a way to catch up on some sleep as it will strengthen you to resist the verbals.
big hug from Jean x
[ at a similar stage but without these things - - - ]
Jean don't you just hate this illness george was such a pain yesterday felt like walking out. Big hugs Yvonne xxxx
Oh, Yvonne. That must be so hard. Chris is the opposite - quiet and stoical. I just feel so lonely because he was a very stimulating man. He must find it so awful. Its a nightmare disease !!
love, Jean xxx
George use to be a building surveyor, he keeps saying he wants to build an extension, we have a little fig bush he asked the gardener, to dig it up and put it somewhere else. He wants me to sit on a chair and watch do the footings, are garden is on a slope, feel so sad , thinking about the horrible illness, all the time stopping me from sleeping. Yvonne xxxx
My heart is with you feeling the same way caring for my husband. I have to say seeing the support from others sure is a blessing. Connie
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