PSP Association
5,180 members7,183 posts

Here we go again

Well George has been up since 10.30 agitated, so I thought it might be a urine infection, he was breathing funny, phoned 111 explained everything, doctor rang back after over an hour later, said someone would come out , over 3 hours later doctor arrives, she said he has a urine infection, but she also said she thought the catheter was blocked, so now we are waiting for the DN to come and flush it through, he is moving all over the bed in pain. I am so tired just feel like curling up in a ball and not waking up, he keeps calling me, banging his legs and calling me, been going on now for over 4 hours, no one understands what we are going through!!!!!! How long now for the DN to come just want to sleep, DN just said they would be 2 hours, George is in pain, and there is nothing I can do. Yvonne xxxx

40 Replies
oldestnewest

Oh Yvonne! I'm so sorry! What a nightmare. I wish I could help. I don't even have any bad or useless advice for you, no idea what to suggest for George's pain and agitation. Just, well, hang on! Hugs, ec

2 likes
Reply

I'm with ec, I have no good or useless advice...except maybe you can hang on to a couple pills so that if and when this happens again, you will be prepared! My man is on the pot , has been for an hour, constipated and drowsy...it's 12:47am....and I'm so tired'AVB

1 like
Reply

My guy just fell off the toilet bowl trying to take care of business...at least he did not fall through it this time.... Well I just got him to bed, dressed his tubes so I am about to follow forthwith....Goodnight Yvonne....and ec

AVB

Reply

My guy just fell off the toilet bowl trying to take care of business....well he needs my help take care yvonne

Reply

A hug for yo two.

Reply

Oh Yvonne, how awful. That's what I find the most difficult about this horrible condition, when I know C is in pain or discomfort but don't know where it is or what I can do about it.

I hope the DN visits very soon and helps poor George.

Sending you a big hug.

X

3 likes
Reply

Omg Yvonne another awful nightmare! I hope the DN has been and sorted everything now! Reading this kind of post makes me very wary of catheters! So worrying, tiring and frightening! Sending you both huge hugs and loads of love! ❤️ X

Reply

Yvonne my heart goes out to you, there's nothing to be said that can help, I hope the nurses visit soon and get George comfortable xxxx

1 like
Reply

Yvonee..how is the situation going on now.. i wonder why dont you use condom catheter to avoid blockage and UTis? For my dad it is more calm when he used it... he had that pain when he used the internal one but now no pain AllhamdulilAllah.. hope everything is better and you had a nice sleep too.. lots of love and hugss.. Mai xx

Reply

Some times people have to have an indwelling catheter. Brian can't pass any urine at all now so we have to have a an indwelling one and because he has a lot of deposits in his bladder his does block fairly frequently.. next blockage he will have an open ended catheter inserted... less chance of blockage. Janexx

1 like
Reply

How painful is that not passing any urine!! Poor Brian.. my heart goes out for both of you dear Jane.. take care please..xxx

1 like
Reply

My guy couldn't use the convene and had lots of trouble with the indwelling one, too. So I use layered briefs and deal with emergencies as they arise.

2 likes
Reply

You are strong easterncedar... keep going dear and dont forget to take some rest.. xxx

1 like
Reply

Oh poor ec...I guess if you can prepare for it that way it's what you can do

Reply

It's really not that bad! We sleep through most nights now, which is a major improvement compared to last year when we NEVER had more than 3 hours out at a time.

1 like
Reply

barometric pressure down to 29%...every swollen joint including eyes are in pain..so tired...B is sleeping nicely....I'm glad yo can sleep nicely sounds like you solved problem in an effective way...God Bless you ec

Reply

Thank you all district nurse came just after 6 o'clock, we were both so tired, after she left I cleaned him up and he is fast asleep, no centre for him today, I am just having a cup of tea sitting on my bed and relaxing Yvonne xxxxx

1 like
Reply

He did not like the convens so it was the catheter xxxxx

1 like
Reply

So glad this nightmare is over. Take care of yourself today.

Reply

Sorry for your bad night. Hope you catch up with sleep today and George sleeps too !! Feeling frightened and helpless is awful.

Chris takes the convene off too.

Love and a hug, Jean xx

1 like
Reply

So sorry to hear, I hope he is feeling more comfortable now and you are resting a little x

Reply

Its dreadful usnt it? While you were waiting, we were waiting , for the ambulance as B had fallen and banged his back causing a big swelling. I called the helpline but they would not come because he had been injured.So we sat on the hall floor for ages. The ambulance people could not diagnose, but he would not go to hospital. We then waited for a paramedic. He did a thorough check over and said that the swelling would go down, the ribs and spine were not compromised.Very late, very tired, slept in for the carer this morning. Sending sleepy hugs and hoping that things have calmed down.X

Reply

Hope George has been sorted by now and you have managed the carer's snooze (definitely not sleep). I know M is different anatomy but after an early blockage I asked DN's show me how to flush the catheter as it looked easy (attach bottle and squeeze.) it worked a couple of times but I always did it while on phone to ambulance/DN service just in case.

Best wishes Tim

Reply

Tim they didn't try and flush it they changed it x

Reply

Shocking that they take so long. It may be better to call for an ambulance next time, atleast that way they are forced to help. The paramedic may have been able to flush the catheter. It's horrible watching your loved one in pain, feel sooo helpless.

Anyway I'm glad it's all sorted, maybe you can both get some rest now.

1 like
Reply

Hope today will be better for you, try and get some rest(haha easier said than done)

Debbie xxx

1 like
Reply

I've had this with Geoff, the DN came and unblocked it within the hour (it happened in opening hours)!

Then in the early hours the following morning he was just as you described George. I also called 111 and the doctor came under the hour and removed his catheter. Geoff now has a convene and a nappy at night, which is more comfortable, with no risk of UTI.

Not sure if a convene will be suitable for George, but if you think it might help, discuss with DN.

I am with you all the way, Thank goodness for this page, because NO-ONE can possibly understand what we all have to go through on a daily basis.

Poor Geoff was crying last night and so I laid beside him, soothing him and asking him what was upsetting him. He said 'I can't even make love to you. I can't even make you a cup of tea' It broke my heart.

Try to stay brave and strong, our loved ones are in there.

Geoff may seem miles away most days, but just those 2 sentences told me he is still with me.

It is no ones fault that we are all suffering, those with this awful PSP and those who care.

Pam x

5 likes
Reply

So sorry to hear your problems Yvonne, hope George (and you) can have an easy day and try to catch up on some sleep. The stress levels we experience must be enormous !!

xx

1 like
Reply

I know how it is! I'd give anything for one uninterrupted night's sleep. Urinating all night long, every night. I'm trying to learn how to stand up and sleep.

I'll keep you in my prayers today.

Cuttercat

2 likes
Reply

The sleeplessness will drive you round the bend, Cuttercat. I hope you find something that works for you as the layered briefs does for us. I was nearly crushed by the lack of sleep last winter. This has saved me.

1 like
Reply

Yvonne, feel so sorry for you. We all have our bad times and then good periods of time. Keep us in the loop. i will write a post about what has been going on here.

Audrey xoxo

1 like
Reply

Yes, Audrey, do let us know how you're doing. It has been a while since we've heard from you. Love, ec

Reply

Well first he broke his femur about 6 weeks ago which is why I was not around. Then rehab. Should have been home this week but I had my accident 3 weeks ago. I didn't go to the hospital since I figured if I rested it would go away. Of course it got worse instead of better, severe pain which finally sent me to the hospital, primary and neurosurgen. MRI for the neur so that he could definitely see what I did. They said I have osteoporisis, oops spelled wrong, which having the fall gave me the compression fracture. Lucky me.

Love Audrey

Reply

Yvonneandgeorge

Hugs and prayers. This so awful. When it comes right down to it you are abandoned in your darkest hour. This is not right. We are all here for you with prayers and hugs but you need medical help. Can you call an ambulance? I would if they can not come soon. For people 65 and over ambulance service is free in Alberta.Doctors do not make house calls here. So sorry you two have to go through this.

Reply

Yvonne,

That is one tough night!

I hope you got some sleep today - or is that a silly thing to say?

Warmly

Kevin

xx

1 like
Reply

Slept a couple of hours really tired now like walking on air, hopefully we will sleet going to bed at 10 o'clock xxxx

Reply

One thing after another Yvonne, I hope he is feeling a bit better now and the pain is sorted. It is a lot for one person to cope with and you feel so helpless when you can't ease their pain. Hope you get a good nights sleep, sweet dreams.

Love Kate xxx

Reply

I had a good night sleep George looks better this morning, I still feel tired, looking at jobs to be done but can't be bothered xxxxxx

Reply

Yvonne so sorry to hear that George is having such a terrible time so hard to see them in pain, wish I could help, thinking of you and George, pray that he gets better so hard on us.❤️ Hugs to you. Nettie

Reply

Nettie thank you it is hard, he seems a bit better today, made him get up, he kept complaining he was cold, so got him a cardigan and blanket all ok !!!!!! Yvonne xxxx

Reply

You may also like...