Hi
We are now at the stage where my lovely can no longer transfer from the bed to the,close by, commode at night without assistance.
I used to get up in the night to help her, some 3 times in the night, but my sleep quickly fell apart and my coping as a carer wend down hill.
So I guess we are looking at pads now?
I will need to change them at least once in the night looking at current volumes of pee.
Any guidance really appreciated.
Thanks
Kevin
Hi Kevin
Ooh one of my most experienced subjects lol
Firstly do have a neuro team consisting of physios, speech therapists and incontience nurses?
If not, you NEED them?
The incontience nurses will order the pads for you, also you can ask the district nurses to supply some whilst waiting a delivery from the incontience team!
Right for night my dad has Tena Flex Super with a easy use belt, they come in maxi too, they are even more absorbent so if you can get maxi get them!
You'll also benefit from Tena Super inco sheets, they help in keeping the bed dry!
I do NOT recommend changing these pads by yourself it's way to hard and an awful strain on our backs!
You'd be better off asking for the DN's to visit each evening to help Liz into bed and they will put the pad on!
Also the DN's can be called anytime at night to do another change so don't hesitate to use them!
Do you have carers or dare I say chc?
I'll just reiterate don't try n do this on your own, it's not a one person job!!
Hope that helps a bit? X
Sorry also you can buy both these products from Lloyds pharmacy if you have one near you, not cheap but less expensive than online!
I'll email you the pics of what you need
X
Brilliant... I have talked to our No.1 carer and she says she can put one on for us. She also says that the local Incontinence service issue the Tenna Maxi.
Great advice... Now to get the G.P. to refer us to the incontinence service... shouldn't be a problem. Thanks 
Oh Kevin, Liz, I feel for you both. This, as you are more than aware of, the bane of all our lives. Not wishing to state the obvious, but I am sure you have a good quality mattress waterproof protector. We also have a washable bed pad. On top of this, when S was in pads, I put a disposable bed pad. The cheapest ones, are from the pet stores, puppy training mats!!! Do the trick just as well. Just helps keep the washing down a bit!!!
Pads, anything that the NHS, gave us lasted two minutes. I went to our local disabled shop and bought the best quality I could find. You can get them on line for half the price, but somebody advising you in the first place, is worth the extra money. Make sure you get very tight pants for Liz to wear, I think that is the secret. We still woke up to wet bed every morning.
Then it's up to Liz to learn to use them. That's the hardest part! Which we can all understand. Perhaps sleeping pills for both of you might help.
You could talk to the continence nurse, I know they have convenes for women, but don't know how good they are.
S now has a Catether fitted, stops all these problems. OK, brings a few of its own, but at least I don't have a wet bed every morning and i don't get sleepness nights for this reason, plenty of other reasons to keep me awake!!!
Lots of love
Heady
Not yet...Our experiences have been minimal. Though I thought for awhile there it would be nightly! I remember what NananB told us. Pads above and below the sheets. Depends on the patient.....And may I add always have a clean set of sheets!
AVB
If she can tolerate a straight catheter, the kind you use and remove, that might empty her bladder enough before she goes to sleep to help minimize the overflow, and that is something you can do yourself. BUT I have to say the doubled briefs with a guard in them (and several holes poked in the two inner layers to allow urine to wick through) get us right through the night now almost every time, although he is wet through in the morning. I have been very happy since we started that routine! We had been through HELL for MONTHS before with him getting up and failing to make it to the toilet, then my trying to get him to use a urinal, then the straight catheter and then the permanent one (prostate trouble made them impossible, really) and then changes of clothing and bedding three to even 6 times a night. I was a wreck! Currently I put under him a washable lined cloth bed pad and a disposable one, and I rarely have to wash that bottom layer, although he generally gets the disposable one wet by morning. (The VA provides us with wonderful disposable pads, so I don't know how expensive they are.) I got nearly 8 hours of sleep last night and feel like a tiger. Good luck. I hope you find the answer that works before you get too frayed. This incontinence business is worse than anyone who hasn't experienced it can imagine. Love, ec
I'll second your last comment! Catether has certainly changed my life, thus giving S longer at home!
Lots of love
Heady
"and then changes of clothing and bedding three to even 6 times a night. I was a wreck!"
Please remember I am a male... not made of such stern stuff and we frighten easily.
How you survived that is beyond me.
Is this the sort of thing?
amazon.co.uk/s/ref=nb_sb_no...
Thanks
Yes, that's the sort of thing. Good luck! I now, having been so pleased at finally getting the urinary incontinence managed, am faced with ( grimace) the other kind. Rather more traumatic.
Hurrah!
We got the under the sheet pads yesterday. They look like they'l do the job.
Thanks
Kevin
xxx
A trusted online site that I use for, disposable bed pads, Disposable gloves,no rinse shampoo, and a huge must,large dry wipes and an array of other things you might need including pads and pull ups,is Completecareshop.co.uk
D x
There is a female urine bottle if she wanted to go that route for a while. But apart from that it will have to be pads I'm afraid.
The pads that the contanance team supply are not as good quality as you can buy yourself. The pads that i bought for Brian are called a slip (and they are like baby pampers). But the shaped pads are great and you can use a pair of net knickers to keep in place. There is also pull ups that are like underwear no need for knickers . The slips and pull ups are impossible to get on the nhs now. And if you do buy the pads get the highest absorption that you can. The contanance team will give you the lowest that they can get away with. It all comes down to cost and we know the nhs want to save as much as they can.
You could always double pad Liz but make sure you make a couple of small holes in the inner pad to allow the urine to seep through into the outer pad. Also using a disposable bed pad soaks up excess as well.
I do manage to clean and change Brian if he needs it. He has got a catheter so he is not wet but sometimes he does mess at night.
Janex
I shall google some of this... thanks
So Tenna are not so great then?
I see some folk say that sort of product leaks.
So double pad with two slips?
Thanks
xx
Kevin the lady i work for (she is 95 and on water tablets) she even double pads all the time. She gets her 3 pads per day off the nhs and also buys some. The nhs will not supply enough to double pad. The maximum amount of pads you are allowed on nhs is 4 per day.
The amount of times i would take Brian to the toilet re-pad him only to transfer him and he would mess or flood the pad. Janexx
I second other uk respondents to say products from nhs incontinence service were/are inadequate for my husband. I can just about cope with helping him up if he wants to go to toilet at 3 am but if it meant having to change sheets as well my sleep pattern was done for. Buying best quality high absorbency close fitting pull up pants (Boots or Tena) ourselves has been worth every penny (or pound) plus two layers of mattress protection. And trying to plan most of his fluid intake during morning and less of an evening. Now that swallowing is becoming more of a problem his fluid in and out is reducing which is not ideal but makes nights easier.
The quality of the pants myst be good as he seems always comfortable and no skin problems.
Keeping our sleep quality at its best as care givers is vital I think.
Good luck.
Fiona S
Hi Fiona
There really does seem to be a post code lottery here... my carer says they do Tenna Maxi here.
I used to get up and help Liz in the night... but my sleep and I started fallinng apart.
Thanks for the help... This next PSP step is going to be challenging for both of us.
xx
Agree with all above. Its a nightmare.
At present we cope with Chris wearing a convene. Unless he takes it off !!!
He is in a hospital bed so mattress is waterproof. We have pull-ups supplied by incontinence nurse. She didn't want to but approved them as it was best for Chris.
Under him I put a disposable sheet and under that a washable bed pad.
We only have disturbance [ waking me !! ] if he wants to do a pooh or he pulls convene off.
This creates more irritability for me than anything else. Being woken at 4.00 a,m, just doesn't suit me !!!
Good luck
love, Jean x
Who does it Jean???
I think this is one of the biggest problem with PSP, the bowels and bladder, that the professionals just don't seem to even acknowledge. As for them worrying about us Carers that are not getting any sleep, forget it. Think of all the millions of pounds and more importantly, the lower stress levels for Carers if somebody did look into it! I know S would have had to go into a home by now, if he hadn't had his Catether fitted. Equally, his last years of being independent, were totally ruined by having bladder problems and me being a complete nervous wreck, due to lack of sleep.
I know we are all desperate for a cure, but a bit of research money, spent in this direction, would go along way to improving people's lives.
Lots of love
Heady
I have never felt that any of the professionals I have dealt with have any experience of being a carer. The incontinence nurse we saw , when I said how I hated dealing with his pants said, " oh no, You don't want to have to deal with faecal matter !"
I was speechless.
What did she think we were dealing with ?
Dealing with bladder and bowels has brought me to tears more than anything. Plus the restrictions it puts on you.
We have always enjoyed eating out. Now the concerns about toilets, choking and him not talking - only when with family or friends.
HATE PSP
love, Jean x
Yes, we only go out now, if I have someone to help. Even then it's a struggle. Can't eat out anymore, he needs a puréed diet, his drinks need thickening, that's put going somewhere for coffee to an end. Plus, you can bet he decides that his bowels need to be attended to. Hours in a public loo, is NOT my idea of fun!!!
Like one of these continence nurses to spend 24 hours with one of us! Or better still a consultant. That would soon change a few things
Lots of love
Heady
4p.m is the worst time to be woken! Not quite night time anymore but in my book,definitely not morning yet and it is sooooo hard to get back to sleep......so many thoughts spinning in my head and in no time at all, it really is morning and I get up just to be able to have a quiet cup of tea before my day really starts!!!
Ce la vie!!!( hope my French is right)
Dx
Sorry Kevin it happens with this horrible condition. Agree with Heady local pharmacy or disability shop for high absorbent pads but do not turn down the NHS ones as once on list you get regular delivery and can ask for highest absorbing ones do not accept initial batch they learn quick.
M has had a full time urinary catheter since January, took a month of upset forced removal by her, burst ballon (DN never seen before) and blocked tube. Since Feb settled down no wet beds or clothes makes much easier taking M out, she wears loose legged trousers hides bag brilliantly. Nursing home have had problems in not checking the bag regularly so have had accidents.
Main thing is to keep fluids up this ensures no blockages, OK with a PEG but can cause issues if fluid intake poor.
Pity nothing for bowel clearance other than nappies (pads).
Good luck Tim
Hello Kevin,
Can I just mention to keep an eye out for ‘retention’.
Incontinence gets a lot of coverage for obvious reasons but the opposite, being unable to pee, can be dangerous. I was totally unaware that such a condition existed and was so pleased when I woke to a dry pad and bed. I simply assumed we must have got the timing on loo visits right for once. My elation soon turned to dismay when the social services lady pointed to my wife’s swollen tummy and told me to get the DN immediately and get my wife catheterised. That was 09.00, the job wasn’t done until 18.00 and only then because I got somewhat aggressive. The first DN visited and simply confirmed catheterising was necessary but wouldn’t do it without a doctor’s approval, the doctor came, said it was necessary but wouldn’t do it and said I must contact the DN!!! When chasing up the DN, who hadn’t put in an appearance, she said she wasn’t supposed to come to England after 6pm in spite of the fact I’d called her several times since at 2pm (I live in Glos. but the surgery is in Wales), that’s when I went into very cross mode - she came without further argument. Two litres later Margaret looked so relieved and this showed on a face that seldom registered any emotion.
So, as hard as it is to believe, a dry bed can be worse than a wet one.
Regarding your initial query, I found ‘Kylie’ sheets a big help in absorbing leakage from pads.
Best wishes, Jerry.
Yes the retention is very bad. Brian had a distended bladder (common in neuro desease) wich ment it was not emptying properly gp sent district nurse in twice to put in a catheter but they decided that being as he had passed some urine he was constipated and gave him an emema. When i ended up getting cross with the district nurse and told them to f off they did a bladder scan and he had over a litre of urine in his bladder. So they catheterized him..... In ten hours he passed 6 litres of urine. Nice flat tummy and definitely no constipation. Janexx
This is a great big thank you to all of you!
These replies are sooo helpful.
PSP is a vertical learning curve.
Thanks hugs and all of the best from both of us.
(I did a trip into London today my car broke down... hence the slow response)
Hi Kevin, I think we almost at that stage, although being a man he only needs a pee bottle. I told doc n 7th July we need incontinence nurse, we have been referred to adult incontinence services(well I assume we have) but as usual it's a case of get on with it!
Thank you for all the useful info you post, much appreciated
Love Debbie
It really does help to know you are not alone in dealing with this. Also how really hard it is on us. I feel I would scare my friends if I was frank with them !!!!
Thanks to all the friends here.
love, Jean x
Jean i know what you mean about scaring people. My daughter has asked us to an event in august told her at the time it was a no go for us. (She has not seen us since April 2015). Has asked a couple of times since even saying we can take a plus one because we would need someone to drive us on the 2hr journey to get there. I have ended up telling her exactly what is what and she ended up in tears and saying it can't be that bad...?
It's amazing isn't it?... I haven't told my brothers and families details, just that it is tough, or gone into the detail with L's sisters (and they are all close).
They just don't want to know.
They prob. are frightenned they will have to do something
Having said that L's sisters have said they are here for us both... but they live far away and are very busy.
Sigh
This is my first real post but the incontinence thing is our current problem. J is in fairly early stages of PSP as far as I can see from your posts. Still walking - slowly,shakily but mobile with cane in one hand. Can go upstairs unaided. Chokes often, talks quietly etc. But he's basically still my man, just a little vague!
However, he has had three bouts of bowel incontinence in the last three months. Thought it just a one-off at first, then a two-off, now not so sure.
The latest time was having a meal with our two grandchildren in a pub during a car rally. So embarrassing for him. His vision is poor so he didn't see that he had soiled the outside of his trousers and of course there's the smell.
I'm anxious that it shouldn't put him off going out while he is still able to so we are trying to draw up an action plan. So far have bought pull-ups and baby wipes and think these and plastic bags will all fit into a bum bag. Any other ideas/thoughts?
Incidentally, he is about to start Rivastigmine which I believe might exacerbate the problem.
Rx
Chris is a bit further on and so has accepted he needs my help.
At your stage I talked to him and said we needed to accept a coping strategy. I carried " spares " and we used the disabled toilet so I could help. This still works except when he won't co-operate. I'm not sure how much is PSP and how much is his temperament. A bit of both probably. Its really hard for both dealing with this. Crosses all the lines regarding independence and dignity. What really gets me mad is that Chris still insists on doing it his way when it is inevitable that it will go wrong. I think that is PSP meaning he doesn't learn new things.
This really tests you !!!
Love, Jean x
Thanks Jean. I'm blessed in that Jon is very cooperative but I really feel for him in his indignity and embarrassment.
It would just be such a shame if we lost whatever time he has left when he can take part in normal activities. There's time enough to come when he will be inevitably restricted but I hope we can cope well enough to avoid hastening that.
All the best
Rosemary
Rx
oh yes, oh yes. It's very hard when I can see the awfulness coming and my guy won't let me deal with it before it becomes a horror show.
Hi Rosemary
How embarrassing for you both.
Yes, planing is all with this in't it.
Do come back and tell us how he get's on with Rivastigmine. I've not heard of it before. It seems to tick a lot of boxes. Good luck to you both with it.
Warmly
Kevin
Kevin, I thought I had replied to you but don't see my reply here - apologies if I missed you, and many thanks. I enjoy your posts very much and it's lovely to hear from Liz to get the view "from the inside".
Only 10 days into low dose of Rivastigmine so far but will keep posting.
All the best to you both
Rx
I am afraid that's all you can do. Be prepared. I would add, have spare clothes in the car as well. Also, I know this is treating him like a child, but try to get him to use the toilet before going out! You talk about the pub, so I am presuming you are in the UK. Get a radar key for the disabled toilets, disabled shops, library stock them. Then at least there is rarely a queue and you can go in and help.
You are doing the right thing in fighting to keep going out, it's so easy to stop doing things!!!
I see this is your first post, don't be shy, this site is the best! We are all Carers like me or sufferers of PSP/CBD. Everyone uses this page to ask for advise, rant, rave, kick and scream about this evil disease. Afraid we do tell it as it is, warts an all. Once you get over being frightened, you will find it a great comfort. PSP makes life so lonely, knowing and talking to others, bridges that gap!
Lots of love
Heady
For what it may be worth to you, Richanne, my guy's GP just told me that incontinence could be caused by the opposite, that the constipation my guy has been suffering, can cause a blockage in the large intestine and uncontrollable leakage squeezes around and past that. So despite the recent terrible incontinence episodes my guy is taking a daily strong laxative. I am trying to time the dosing so he doesn't lose it while I am at work, because he doesn't want the aides involved. So far they have been spared, but it took me nearly 2 hours to get him and all the collateral effects cleaned so we could go to bed last night. Awful, isn't it?
Thanks EC. I am aware of this effect but know it is not our problem as Jon goes regularly twice a day. So far only three episodes at monthly intervals so not huge impact as yet. We're just anxious to continue activities as normally as possible.
Thanks so much for your help, as indeed everyone else here.
These posts will be invaluable to me, thanks everyone. Ben still in hospital and become incontinent after his op. Seems to be regaining it to an extent but certainly doesn't have full control. He is obsessed that he has three bottles by his bed when I leave him in the evening and nurses seem reluctant to provide them saying he can ring the buzzer to call them for help. Trouble is they can take a few minutes by which time it's too late. So degrading for him, he hates being at their mercy. I'm sure they think I'm a demanding interfering old busybody but it's such a small thing to help keep his dignity and give him reassurance. Every night when I get back back home I could scream at the incompetence and lack of empathy I witness, many of the staff are lovely but it only takes one of the staff to be less caring to make it difficult for him. Last night he said I just want to come home, we are 5 weeks down the line now and hoping to hear what is proposed for us so that he can get home.
Thanks for posting Kevin and thanks again for all the advise from everybody.
Love Kate xx
How sad, Kate. It seems so unnecessary. Hope things get sorted quickly.
Love, Jean x
When S was in hospital, before diagnoses, he was like that, neurotic about having enough bottles by his bed. Thankfully, they did let him. It was me then, that was asking why!
Kate, get the continence nurse involved before you go home. See if Ben can be fitted with a convene. They are brilliant, if they work! Didn't for S.
Lots of love
Heady
Yes. Chris uses a convene at night and when we go out. It works well. He has a discreet leg-bag.
At night he often takes it off though !
But the convene works.
Jean x
Hi heady, thanks for the advice will speak to someone on Monday. I think the thing that gets me is that every evening I have to go chasing for bottles and some staff obviously think I am an old fusspot. It is the last thing Ben's asks 'have I got my bottles' and he carefully places then where he knows he can reach them. Some of the nurses are very willing and others not too pleased to get them and say 'I will sort it out later' What makes me think they won't, well it's the wet clothes I bring home the next day, seems so unnecessary to let him stress about something that sounds so trivial but in fact is a massive thing to him. Am I being unreasonable keep asking, keep reminding them of potential falls, keep reminding them he has difficulty looking down to see his meal, keep reminding them he has developed double vision. Need I go on! It is so frustrating and breaks my heart to see him looking so vulnerable.
Love Kate xx
Of course you are not being unreasonable. Think it might be time to ask to see the ward sister and tell her/him the problems and see if they can get something sorted to stop this. No joy there, start going up the ladder. It's only basic care you are asking for, not a miracle. Though, we are talking NHS here, perhaps that in its self is too much!!!
Keeping fighting Kate, somebody has to, for Bens sake!!!
Lots of love
Heady
Incontinence.
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We are getting near the incontinence stage
