Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > General HD topics

General HD topics Open forum for all other issues concerning Huntingtonís disease

Reply
 
Thread Tools Display Modes
Old 10-09-13, 10:57 AM   #1
Gillywig
Approved Member
 
Join Date: Jun 2013
Posts: 143
Default Help With The Toilet

Hi All,

Not the most pleasant of subjects but I need some advice on night time toilet problems.

Mark is fine during the day and can get to the toilet okay but at night he is struggling to get up and get there which has resulted in him leaving a trail of wee from the bedroom to the toilet, with a large puddle just before the toilet itself! I am trying not to make a big deal of it in front of him as I can tell he is distressed by it but at 3am I am not always the most patient!! I was scrubbing carpets and lino at that time this morning!!

We have recently got ourselves a bottle to use and we do this by the side of the bed so that he doesn't have to try and get to the loo (also takes sleeping pills, clonazepan and quetiapine at night so he is completely knocked out too which doesn't help!) but I was just wondering if anyone else had any advice?

I also set the alarm at various intervals to get him up for the toilet but sometimes he doesn't want to and then ten minutes later we have a puddle!!

He keeps saying to me "getting worse" so I am concious that he is aware that there has been a decline with going to the toilet. I don;t know if he could yet cope yet with the idea of pads etc.

Any suggestions??

Thanks
Gillywig is offline   Reply With Quote
Old 10-09-13, 12:30 PM   #2
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Help With The Toilet

Hi Hun,

Steve was very good with bladder but, like Mark, he did get to the stage where we had to pre-empt as it were. My heart too was breaking when it happened (see below poem).

In terms of the night time, Steve wasn't on anything other than Tetrabenazine for the most part but he could be very sleepy/bewildered.

There were two things that helped. I kept a pail in the bedroom (one of those plastic ones for the mops that wring out. I took the top bit off to make it just a long empty bucket)

When Steve woke I would go to him and hold it in front while he did his business. He had the bed behind him; bucket in front; hand on my shoulder and seemed secure. I can assure you, where I held the bucket up to the right height I never got any on me but you gotta love and trust your man

We'd have tisues and wet wipes by the bed. I'd trott off to dump the contents down the looo as Steve got settled back into bed again. There was another side of that too. It gave me a chance to check the colour as looking for dark urine as an indicator of needing more hydration/having a bladder infection is always a good thing to keep an eye on.

Later on, I did broach the subject of tenna pants as a bit of extra security when out and about. Steve wore track bottoms anyway most of the time so they didn't show. Bless him... he agreed to try the ladies pull on ones and it was our secret so to speak. They gave him a bit more confidence.

Later, later, I managed to get him to have even more protection by supplementing the absorbency with sanitary towels too as per the below poem. I wasn't aware at the time there were so many varieties of pants and some designed specifically for men. Take a look on line and maybe get Mark to try one or two types on the basis if he doesn't like it them doesn't have to carry on. Example site

I think it all came down to psychology in so far as the alternatives were leading to catheter and, given the options, Steve was happier to try the less invasive option as it were and was happier to go with me thinking outside the box.

ďOops thereís a puddle, it could be your cup?
Donít worry my love, Iíll soon clean that up.Ē
As I run to the cupboard to go find my mop,
He canít hide his embarrassment, head starts to drop.

I change him once more, and make light of the stain;
He is mortified now that itís happened again.
Once so smartly dressed heís now sadly resigned,
To wear track bottom trousers; fast exit designed.

Too soon comes the point where it canít be denied,
That itís best to wear pads; other methods now tried.
The catheter painful where tugging on skin,
And the mess even worse, where the tube wonít stay in.

At least with the pads he can sit there for hours;
No worry of accidents, rushing for showers.
Now come to terms with it, heís drinking more;
His hydration better than ever before.
__________________
I tried.
Trish is offline   Reply With Quote
Old 10-09-13, 01:18 PM   #3
Gillywig
Approved Member
 
Join Date: Jun 2013
Posts: 143
Default Re: Help With The Toilet

Thanks Trish,

You are such a wise Owl

The bucket sounds a really good idea, I will try that.
The trouble is that he won't wake me up when he needs to go. He tries to manage on his own. It breaks my heart when I say to him "you must wake me up" and he says "but you tired". Really sad. It breaks my heart when I see him standing looking at the puddle of wee, silent, like a little boy. He could also fall and hurt himself when he is so doped up on his meds so he needs to get me up. I think I am going to have to try to get him to wake me up. I would rather that than the puddles!!!
He also drinks too much tea!! I am going to try cutting his evening drinks as I am sure that will help.
How did you approach the subject of pads? I have thought about it but don't know how he would react. How do you put it positively?

Thanks
Gillywig is offline   Reply With Quote
Old 10-09-13, 03:47 PM   #4
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Help With The Toilet

Quote:
Originally Posted by Gillywig View Post
Thanks Trish,

You are such a wise Owl

The bucket sounds a really good idea, I will try that.
The trouble is that he won't wake me up when he needs to go. He tries to manage on his own. It breaks my heart when I say to him "you must wake me up" and he says "but you tired". Really sad. It breaks my heart when I see him standing looking at the puddle of wee, silent, like a little boy. He could also fall and hurt himself when he is so doped up on his meds so he needs to get me up. I think I am going to have to try to get him to wake me up. I would rather that than the puddles!!!
He also drinks too much tea!! I am going to try cutting his evening drinks as I am sure that will help.
How did you approach the subject of pads? I have thought about it but don't know how he would react. How do you put it positively?

Thanks
In terms of the initial (tenna) pants, I got a pack and showed them to Steve and mentioned hey were designed to help people keep dry. I made the jokes about my own wearing them if he didn't want to as I was getting to be an old lady and nervous when I coughed

He saw they looked just like normal pants and, like I mentioned, I said no one would know if he was wearing them (our secret). He tried a pair on and we agreed he'd only need them when going out. We were at the bucket stage for night time.

When going away though (we'd do the odd short trip) he'd have them in bed then too as he knew it would be embarrassing to have an accident. In effect, he was coming to associate them with security.

Apologies to all the squeamish out there for this next bit but I've started so I will finish. Like a lot of ladies of a certain age, 'the change' meant that sometimes I'd go to bed and, whilst not urine, I'd be worried about leaks shall we say. In fact, that was a problem even before the change. On that basis I was able to remind Steve that I had used pads and products at bedtime for extra protection so it was along the same lines. In essence, nothing to be ashamed of and he had put up with my problems over the years so we were in this one together

If you are going to go down the tenna pants route in the initial stages, I found it good to use reinforcement for bed time later on when Steve couldnt get out of bed by also using Kylie Sheets

Also inserting a couple of kotex in the inside front of the pants (they can be stuck in place by tearing off the strip) absorbed a lot. Maybe buy 1 pack and tip a cup of water onto it to demonstrate just how much they absorb might be an eye opener.

It's so sad with those we love that reasoned thinking is compromised and the drugs are often clouding any clear sky thinking anyway. If you are able to get your hubs to trial the pads suggestion (be they the make shift types I mention or full-on incontinence ones) I found giving Steve input - as in if it doesn't work we can try something else... or if it doesn't work we will forget about it (and then giving a few months break from mentioning, made him feel he had more choice bless him.
__________________
I tried.
Trish is offline   Reply With Quote
Old 10-09-13, 08:30 PM   #5
dennisw
Approved Member
 
Join Date: May 2007
Location: South Cumbria
Posts: 847
Default Re: Help With The Toilet

As hubby is distressed by the accidents and the work it causes you. You try explaining that using the pants would help avoiding the accidents and work for you.
Our jack has been using them for quite a while now and I think he preferred these to accidents. There are a whole range of sizes and designs. You could ask GP for a referal to an incontinence nurse for advice.
Dennis
dennisw is offline   Reply With Quote
Old 10-09-13, 09:26 PM   #6
Gillywig
Approved Member
 
Join Date: Jun 2013
Posts: 143
Default Re: Help With The Toilet

Thanks both of you,
I have looked online and some of them really aren't that much different to normal pants. That has made me feel happier.
I think i will do as you suggest Trish and maybe wear them as well. Doesn't seem such a big deal!
I will gently introduce the subject and see how he reacts. He actually never wears underwear so it will be a big change for him!
Thanks for your help guys.
Gillywig is offline   Reply With Quote
Old 10-09-13, 09:54 PM   #7
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Help With The Toilet

You are welcome.

We did have an inco nurse involved later on (when Steve became bed bound as such) but I was all for delaying that for as long as possible if we could work around it in some way.

Good luck with the bucket; pants and all the options. As for not wearing pants in bed at present... Tell him the tooth fairy will be around to pinch his bottom if he doesn't cover it up
__________________
I tried.
Trish is offline   Reply With Quote
Old 11-09-13, 09:10 AM   #8
Gillywig
Approved Member
 
Join Date: Jun 2013
Posts: 143
Default Re: Help With The Toilet

Not just pants in bed.....................he doesn't wear them at all!!! Jogging bottoms and hanging loose are more Mark's style!!!
Gillywig is offline   Reply With Quote
Old 11-09-13, 10:34 AM   #9
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Help With The Toilet

Quote:
Originally Posted by Gillywig View Post
Not just pants in bed.....................he doesn't wear them at all!!! Jogging bottoms and hanging loose are more Mark's style!!!
Looks like you've got your hands full coping with M then.

I'll just re-phrase that one
__________________
I tried.
Trish is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 04:34 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA