Wrote a post and lost it, so here goes again. Well yesterday was our granddaughters 15 birthday she was so excited, we were all going out to dinner, which we did, it was lovely to see everyone so happy.
Yesterday was one of the worse days in a while, with George wanting to go to the loo, we must of taken him 7-8 times, with no outcome. He woke up at 02.15 wanting to go to the toilet I managed to get him o to the toilet he was there until 03.25 nothing again, managed to get him back to bed, he was making strange noises, now he is asleep, it is 03.57 I am wide awake, not tired anymore, can't cry anymore, no tears left, how I hate PSP, it has taken everything away from George, just about understand what he is saying. He can't do much for himself anymore, PSP has taken a hard working man and destroyed him in every way possible.
No emotions for anything, no more smiles. Tough times only, up and down with this bloody illness. DN been in nearly every day, she put him on a drip, they are so good where we are, the DN and the Matron are amazing and the doctor is so caring, we are very lucky.
Posting a picture of my beautiful granddaughter, at her birthday dinner 🎉🎉🎉🎉🎉🎉
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Yvonneandgeorge
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Your granddaughter looks lovely. It is sad that she cannot sit and have a good conversation with George. PSP has taken that too. I do understand what you mean about crying. I am new to this, and have not cried,. I try to just keep moving as I have so much to think and worry about. The truth is that I fear that once I begin to cry, I may never stop.
I am happy you had a nice celebration with your family. Those are the moments that keep us going. Thanks for sharing the beautiful picture.
Karyn I have cried so much there are no more tears, feeling guilty for saying that, but I am so tried , it is now 06.04 and he has been making these noise and calling me for the last hour. I am exhausted xxxx
Great photo. It's amazing how things can look so normal and yet behind it the heartbreak and suffering go on relentlessly. Thank god for those times
. I do hope the toilet issues resolve themselves. A bit like that here. I'm putting stuff into Gerrys peg every couple of hours. Fortunately he went yesterday as that kind of thing is such a worry. Take care and God bless. Marie
Hi Yvonne, thank you for sharing the lovely photo! Psp is so utterly draining for all concerned and is an absolute bar steward of an illness!! It is spiteful and hateful! You my darling are coping amazingly well however can you get any respite? Ie a week at least? It's so incredibly difficult to look after yourself as a carer but you absolutely have too!! I'm hoping to god you had some sleep and that George settles today!! Huge hugs x
George's catheter was blocked again, DN been in new catheter put in. He has settled a bit. Amanda not long back from my week respite. Xxx hope you are all ok xxxx
Bless you Yvonne, dad is ok is but getting very very very confused now 😓 So bloody heartbreaking! Mum is doing well thank you, me I'm ok, no choice is there? You have to get on with it! X
Yvonne I can relate to everything u say it's so hard. When u say"a hard working man and destroyed him" it's so true and heartbreaking. Lovely photo of your grand daughter and we all must keep going. Hugs & kisses. Ronnie xx
What a lovely, happy picture! Thank you for sharing, Yvonne. You must be absolutely exhausted.
As I potter about the house, I often wonder what B would be doing now if he didn't have PSP. It's a weird situation still having the man I love, but not having him.
My six year old granddaughter was found crying , "because grandad isn't getting any better" My tears are all inside, I push them back in as soon as they appear. Maybe one day, I will burst, like an overfilled tank, who knows?
Hoping to go out tonight. The last couple of times were thwarted by B trying to reach for something and falling, minutes before our lift arrived and another by a bowel explosion. Still, he was well dressed for them.
I'm off to the Hospice to try to get help with our CHC appeal.
Hi Yvonne, lovely picture, shows that even in these dark days, there is always a bright spot, if you let it in.
Steve suffered terribly with his bowels. The fights I had when the doctor an DN's to help him, were endless. Finally the bowel and bladder people got involved and they were about to start flushing him out regularly. Enemas were not really up to the task, he was so blocked. Sorry can't remember the name of what it was actually called, but it use to be all the fashion, bowel irrigation. Steve just didn't know how to go and constantly had the feeling that he did, due to being blocked up. Guessing George is the same. Satt (Amanda), perhaps you can help out here, I remember that your Dad was going to start the same treatment, did it work?
Talk to your DN's, get George referred to the Bowel and Bladder people, apparently, they have lots of tricks up their sleeve. This is an extremely common thing, for people with neurological problems, somebody DOES know how to deal with it, it's just finding them!!!
The tears will return, it's perfectly normal to be feeling as you do. It's the total exhaustion, can you get a bit more help? Someone to come at night to sit with George, so you can at least have a restful night, even if you can't sleep. You must get some rest Yvonne, before you collapse.
Thank you Anne catheter was blocked, but the pop business is on going, some day he goes ever day then it comes to a stand still. Hope you are ok Anne really admire you for going to your trip soon. Yvonne xxxx wish I could come with you xxxxx
What I later had to do to get Kim to go was called a "digital stimulation". Pretty gross, but when you love someone so much, who gives a crap as long as it generates one. Pun intended. 😀 Basically you glove up one hand and put on some lubricant on your index finger and insert it into the anus. You then basically masterbate your finger until it produces a stool. Worked about 75% of the time, which wasn't too bad. Always did it while I had her sitting on the toilet and leaning forward. She never complained that it hurt and I always tried to be gentle. The joy a good poop used to bring to me. Crazy, eh?
What a wonderful husband....i'm pretty sure B would not have done that to me...Though I must say he took good care of me after my szr....most of the time....
I so so feel your pain it is s**t. The unpredictability is the worst, it kind of destroys looking forward to any social event, but very important to continue with seeing everyone .
After much tweeking the regime i have with rog is lactulose twice daily, big portion of soaked prunes and rhubarb on his porridge each morning , baked beans daily and if no show on day 4 senna and some move it all (not its proper name!)
A happy time among the many sad ones ! Every day is a fight with PSP, it is so cruel, what it does to our loved ones. I have lots of photos in P`s room in the nursing home - to remind us of the man he once was and to let his carers know that he has had a life before this.
PSP is cruel to the carer as well as the one who suffers.
I wish I could feel less pain as I watch Liz struggle. She too goes to the loo in the small hours and nothing happens. Sometimes twice or thrice in a night. I go back to bed knowing I will be wiped in the morning and doing the basics will be all.
Lovely happy photo Yvonne, as someone else posted you would never think that something is going on behind the happy family image that causes so much heartache. Isn't it amazing that what should be a straight forward bodily function can cause so much grief, Ben has been on the loo four times today, to no avail it means we can't really move out of the house, such a relief when they perform and life can return a bit more to the new norm. Hopefully tomorrow will be a kind day, he will go to the loo and we can go out somewhere with his sister who is visiting from Edinburgh for acfew days.
Oh how I remember those days...couldn't pee for seemingly days! and if he did you just knew it wasn't enough...yet another tube to go in his body...a catheter.......the first catheter had so much urine that they had to replace i it with another right in the drs office! I don't know if this is an answer for you all but you my ask dr! And because of the getting up at night and the sleeping alone now (I guess) I cannot sleep without an aid (Klonopin).
anyway sorry to make this about me....ask the urologist about a catheter.....Love your grandaughters love George and love yourself.....
Oh and one last thought : though rather skewed by the glass the young man behind the glass looks very much like my sons...esp. my oldest hahahah maybe we are family, Yvonne...or is he yours hahahahaha
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