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Problems with catheter during the night

Siv

Registered User
Nov 1, 2015
3
Hi, I'm reaching out to hear from anybody that has experienced problems during the night with a relative that has a permanent catheter. My father has been diagnosed with Althzhiemers recently, he is constantly getting UTI's and is in and out of hospital. During the evening his mood changes and he becomes very troubled and anxious - his focus is on the catheter and he's up wandering around; most night my Mom (83, who cares for him) gets up to urine in the bed and all over the house where he has messed with the tap. He no longer has a night bag as it's dangerous, forgetting it's attached to him, so he has a day bag attached to his leg.He's constantly irritated and confused by the bag, he's cut it off, ripped it out and many nights calls out ambulances. Has anybody experienced similar and if so have you found any better solutions to either get this out of his mind or a better device? The Althzhiemers is something we are able to cope with, but the catheter is all consuming for him and my Mom can't cope.

Thanks
 

Beate

Registered User
May 21, 2014
11,908
London
From what I have heard, catheters and Alzheimer's really don't mix too well. If you don't understand what that thing is that is attached to you, of course you will try to get rid of it. In your Dad's case, sundowning seems to make the situation worse. Catheters also increase the risk of infections so have you thought about getting him a maintenance dose of antibiotics prescribed instead to prevent further UTIs? That's the way we are heading at the moment.
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
Some people who have trouble with relative constantly removing incontinence pads, find that special pyjama suits that zip up down the back are effective. Maybe something similar might help.
It's a sad fact that catheters and dementia are a very difficult mix, though. My FIL had to have one and was constantly pulling it out. He simply could not remember what 'this darn thing!' was there for.
 

Bessieb

Registered User
Jun 2, 2014
108
My father has AD and a catheter. He's had it since June and for the first 6 weeks it was a nightmare. He couldn't understand what it was at all and kept pulling it. On one occasion he was successful at pulling it out and did himself quite a lot of damage.
He moved to a CH in July (with my Mother) and the catheter was a major contributory factor in making this decision. The carers at home - even going in 4 times a day - couldn't cope with it with him. He can't have a night bag as he gets even more confused with this.
After the first 6 weeks he did get used to the catheter to the point that he doesn't pull it as much anymore. He does still try and empty it - wets the floor, his shoe etc etc. The CH staff are really good at making sure it's nothing too major and he doesn't damage himself. And he still doesn't know what it is or what it's for...says there is something wrong with his leg (as this is where the bag is attached).

So the only thing I can say is that it might settle down with your Dad as he gets used to it and he might not pull it / fiddle with it so much. But catheters and AD are a real challenge.

I have also been told that supra-pubic catheters (where they are in the stomach) are more successful with AD patients but do require an operation to insert.
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
I do like Beate's suggestion. When my husband first went into hospital, they decided he was having urine retention problems. Well, he wasn't before he went in! Anyway, he was put on a catheter and kept pulling it out at the hospital and at the care home, later on and had to keep going back into hospital to have the catheter replaced when he had moved into the home.

Eventually, we managed to persuade the hospital to take him off it altogether. The care home people wanted this to happen, and so did I; especially when I was asked permission from a hospital doctor if they could fit a permanent one. I wouldn't allow that. The catheter really did distress husband. He now wears disposables, and I was told, last week that he manages to mostly get to the loo when he needs to. There may be the occasional 'accident' at night, but never during the day.

If you can manage with pads/pants, try to make your feelings known, for both your sakes. It may well be that things will improve if he has it removed altogether.
 

Siv

Registered User
Nov 1, 2015
3
Thanks for such a great response

Thank you everyone for sharing your experiences and ideas, you have all given me quite a lot to think about - in particular the idea of wearing pads and removing the catheter or the night time sleep suite.
 

Siv

Registered User
Nov 1, 2015
3
From what I have heard, catheters and Alzheimer's really don't mix too well. If you don't understand what that thing is that is attached to you, of course you will try to get rid of it. In your Dad's case, sundowning seems to make the situation worse. Catheters also increase the risk of infections so have you thought about getting him a maintenance dose of antibiotics prescribed instead to prevent further UTIs? That's the way we are heading at the moment.
I have asked for a maintenance dose of antibiotics but the doc point blank refuses, Dad constantly has UTI's and they are horrendous - the last one saw him in hospital for 3 weeks
 

betsie

Registered User
Jun 11, 2012
252
My dad had a catheter for 3 years. He kept pulling it out at first but as he got used to it and as the dementia progressed he left it alone.
I did try the special all in one pj thing but it was no good.

My dad had loads of uti's and got sepsis 3 times (twice in the care home). The key is to try and make them drink, it is much more important with a catheter. I used to give him a small glass of water every hour to drink down in one ( in addition to his normal cups of tea) Also try and get them to change it more frequently as the infections tend to start nearer the time it needs changing. My dads was every 12 weeks if it had been every 10 or less I'm sure it would have helped. Get your doctor to write to the district nurses who change it - I think it is automatically set at 12 weeks on the computer booking system and you really have to push to get it reduced.

Re taking the catheter out all together, most are put in due to retention not because of convenience to stop incontinence.
 

Nannie Annie

New member
Dec 1, 2019
2
My husband had A/D he went into hospital after a fall, came out with a catheter in. He seems to have accepted it during the day time, but he has been home for 8 nights now and has pulled the night bag off every night. I can empty his day bag 3 or 4 times a day but must admit I am at my wits end with having to strip the double bed every morning and wash everything I now have three of everything but even then getting it all aired, has anyone any suggestions how to stop the night bag being pulled off, I have it on a night stand but that hasn't helped. I thought at first I had not connected it properly , tried sticking plasters on just hoping someone has found a solution.......
 

canary

Registered User
Feb 25, 2014
11,708
South coast
Hello @Nannie Annie and welcome to DTP

Im afraid that I have no wise words for you as I am having the same problem with OH. I had to throw out the mattress, duvet and pillows as they got soaked. He is now in respite and Im going to talk to the staff to find out if they do anything differently.

Sending tons of empathy.
 

Nannie Annie

New member
Dec 1, 2019
2
Hello @Nannie Annie and welcome to DTP

Im afraid that I have no wise words for you as I am having the same problem with OH. I had to throw out the mattress, duvet and pillows as they got soaked. He is now in respite and Im going to talk to the staff to find out if they do anything differently.

Sending tons of empathy.
Hello Canary, Thank you for listening " to me I think if someone invented a tamper proof tap for these antiquated catheter bags they could make a fortune , in the meantime we have to do the best we can. Already friends and family are telling me to use a CH but although OH is away with the fairies some of the time, other times he is completely lucid and he will not agree to this solution. If staff do have any helpful tips I would be so grateful if you passed them on. I have today ordered a Kylie blanket which might help with the washing, there are so many of us in this dreadful situation, I am so sorry for us all.
 

JimmyC

New member
Feb 29, 2020
1
Hello Canary, Thank you for listening " to me I think if someone invented a tamper proof tap for these antiquated catheter bags they could make a fortune , in the meantime we have to do the best we can. Already friends and family are telling me to use a CH but although OH is away with the fairies some of the time, other times he is completely lucid and he will not agree to this solution. If staff do have any helpful tips I would be so grateful if you passed them on. I have today ordered a Kylie blanket which might help with the washing, there are so many of us in this dreadful situation, I am so sorry for us all.
Hi Annie, sympathies for your position. My dad's night bag kept disconnecting over night and it was so much work in cleaning it up each time. I think it depends on what brand of catheter you have as to how well they stay on. The key component seems to be the clear plastic / rubber tube connection. The first one we used was like a hard plastic and it slipped off quite easily when dad shifted his legs and feet. The soft rubbery tube connection was more of an elasticated jelly like rubber which stretched and was virtually impossible to pull off as it just stretched instead. I'm far from an expert on this subject, but this worked for us and we never had any problem with it after that. Sorry I can't remember the brand we used, but certainly finding one with a long rubber connection, or ever sourcing a suitable sized piece or rubber tube from a hardware store etc may do the trick for you. Maybe your district nurse can help with advice on where to get the most suitable bag and connection. I hope it can help anyone else who's having issues with this at the moment. Best wishes and God bless