Incontinence

[Wishful]

Just so fed up at changing bedding again at 3.30 am. Although my husband does have a waterproof mattress cover, a waterproof pad that covers the side of the bed they, along with sheets and blankets, still need to be washed.

We've (the Royal we) have been going to the doctor's since 2015 and tried various sorts of medication to no avail and problem is getting worse. My husband eventually got referred to see an urologist. No not a doctor but a nurse, she went through the same questions as the GP, spoke to the urologist and decided that more medication should be tried. She also recommended cutting down on tea, yesterday only two cups were drunk, it didn't work.

So this morning, nearly three weeks after the urology appointment, I'm off to the chemist to pick up new medication. The GP could have written the script on Monday when he received the letter from the hospital and telephoned to tell us. No he decided to write a letter and send 2nd class.

Apologies for the length of rant I'm just so tired, angry, weepy and don't know what to do.

 

[LynneMcV]

Hi Wishful, I am so sorry to hear about what you and your husband are going through at the moment.

Please don't apologise for ranting - Talking Point is the perfect place to offload when things are building up - there will be many folk on here who have gone through, or are going through, what you are experiencing now.

For my part, I have only experienced sporadic incidents of incontinence with my husband and it has usually been tied in with him having a virus of some sort at the time - so fortunately the episodes have been short-lived.

I do, however, fully understand the tiredness, frustration and weepiness you mention. There's nothing worse than continuous broken nights of sleep, cleaning up in the wee small hours (no pun intended!) and mental exhaustion from seeming to be forever chasing up the medical profession in order to get the right prescription in place quickly. Sometimes it seems that the medical professionals don't fully understand the same level of urgency that we as carers feel when we take on the brunt of caring and coping.

I hope the new medication you collect today is more successful and I am sure others will be along to share any tips that work for them.

Keep on posting and let us know how things are going

 

[cobden28]

Hi Wishful, I am so sorry to hear about what you and your husband are going through at the moment.

Please don't apologise for ranting - Talking Point is the perfect place to offload when things are building up - there will be many folk on here who have gone through, or are going through, what you are experiencing now.

For my part, I have only experienced sporadic incidents of incontinence with my husband and it has usually been tied in with him having a virus of some sort at the time - so fortunately the episodes have been short-lived.

I do, however, fully understand the tiredness, frustration and weepiness you mention. There's nothing worse than continuous broken nights of sleep, cleaning up in the wee small hours (no pun intended!) and mental exhaustion from seeming to be forever chasing up the medical profession in order to get the right prescription in place quickly. Sometimes it seems that the medical professionals don't fully understand the same level of urgency that we as carers feel when we take on the brunt of caring and coping.

I hope the new medication you collect today is more successful and I am sure others will be along to share any tips that work for them.

Keep on posting and let us know how things are going

This is probably a silly question but does your husband wear incontinence pads or pants at night?

 

[Wishful]

This is probably a silly question but does your husband wear incontinence pads or pants at night?

He was on a high dose of steroids and has put on a lot of weight but would wear them if we could get some that fit. I've spent a fortune buying different ones none have been suitable. I phoned the district nurses two months ago hoping to get advice from the incontinent nurse and although they phoned back the next day I'm on the waiting list for a visit.

 

[marionq]

My husband also has had sporadic incontinence usually the result of disorientation or infection. I make a point of reminding him to go at regular intervals so he doesn't leave it too late. During the night as soon as he starts fidgeting I switch on the light and direct him to the toilet. Some kind of pull-ups or pads I would say in your husbands case are essential.

 

[LadyA]

With incontinence pads and a washable bed pad in pad in place, Other bedding really shouldn't be getting very wet. The bed pads alone are capable of absorbing 2 litres of fluid. When you wash them, make sure you aren't using anything with fabric softener or conditioner in (some detergents have conditioner added), as that will prevent the bed pads absorbing liquid, and it will just run off onto the bedding. To be honest though, cutting down his fluid intake during the day is only going to lead to more problems, like UTIs. He sounds like my husband, who seemed to have an immense "holding tank", and wouldn't go all day sometimes, then he'd release the lot at night! Hope you can find something that helps, because the washing would grind you down. The only other thing I can thing of would be to just invest in plenty of bedding, and then take large bundles to one of the big commercial washing machines every three days or so. But yeah, you wouldn't really want smelly wet bedding around too long either!

 

[Philbo]

He was on a high dose of steroids and has put on a lot of weight but would wear them if we could get some that fit. I've spent a fortune buying different ones none have been suitable. I phoned the district nurses two months ago hoping to get advice from the incontinent nurse and although they phoned back the next day I'm on the waiting list for a visit.

Hi Wishful

Do keep pestering the Incontinence Team - difficult I know, as they're often "hidden" behind some sort of centralised reception call centre.

When my wife first started having continence problems, the initial reaction (after 3 months of chasing just to get a call from someone) was to say that they could not do anything until my wife was fully incontinent!

Then a few months later (and another load of chasing) a nurse visited and said that they could not provide the type of pull-up pants we had progressed to buying. I told them that my wife had a tendency of removing panty-liner type products, so the pads would not be appropriate.

Another couple of months (you get the idea) and we managed to get an appointment at the local clinic at which a different nurse (one that was much more understanding - and less condescending) said they could indeed submit a case for supply of pull-ups, for people with dementia.

We got our first supply (enough for 4 a day of the same brand I had been buying) a few weeks later.

Although we had initially been getting through between 4 and 6 pants a day, by getting my wife to go to the loo every couple of hours (I have to take her there, get her to sit down etc - not always successfully), we mainly get through 2 or 3 a day - 4 at the most.

I do find very occasionally that on getting her up in the morning, the pull ups have got so full that they have leaked a bit, despite ensuring she went before going to bed.

So keep on pestering and I hope you make some progress. I find that dealing with this issue is the single most difficult part of caring for someone with dementia.

Phil

 

[Wishful]

Thank you all for your replies.

I kept a 'wee' chart and during the day he goes once or twice an hour every hour often not quite making it. Because of the size of his stomach nothing fits snugly.

The main problem with the bedding he attempts to get out of bed but his brain and coordination don't work so he ends up sitting on top of the bed then weeing.

 

[MAMMYGRANNY]

Wishful,
I sympathise as we have exactly the same problem here. Just recently I got a urine bottle & when he stirs I'm out of the bed like a shot & quick on the draw with my trusty bottle. Most times I catch it on time but not always. It makes for poor sleep for me but not as bad as having to change the bed which I also used to have to do. You can get the bottles from the incontinence nurse or buy one in a medical aids supplier. Someone recently told me they use a fabric softener bottle - I think it's Lenor that have the large opening - handy if you find it hard to get out to the shops to buy a bottle.
Been through the same hoops as you with the urologist. The medication just doesn't work & we've tried lots!

 

[irismary]

Incontinence is new here and I have been using pull ups but he is currently soaking wet and refusing to move - this has been going on since about 4pm and he has just done another wee so he and the chair are wet. Hoping carer can help but they always say they can only ask him not lift. Twice he has nearly got up but gets distracted. He must be so uncomfortable and I am stressed out. He is going to respite on Monday so at least a break is in sight. I hate this, hate seeing him like this, hate that I can't communicate with him.

 

[Casbow]

I understand what you are all going through. it is not only a nightmare trying to work out what to do to make life a bit easier, but to have to strip the bed every day, wash and get it dry (I gave up worrying about ironing) And having to make another clean bed everyday is exhausting and makes life seem such a trial everyday. My husband had medication but it didn't work. He also was supplied with pull ups from the incontinence service, which are no longer supplied. I bought kylies to put under him, on top of the bottom sheet. I had waterproof mattress cover and waterproof duvet cover. He wet so much that it would soak the pull ups then the kylie and work its way up the bottom sheet to the pillows.When I got him out of bed in the morning the pull ups would drop off with the weight of the urine. And no he didn't have an infection. All this for me was in a double bed. I moved to the spare room with a single bed because i thought it would be too much for him to be moved. So after painting such a bleak picture the best advice I can give is that a single bed is an easier option. Much less volume to handle. Maybe the tablets that the doctor prescribes will help you. Not everything works the same for everyone. Hope it gets better for you all.xx

 

[thetroutfisher]

My wife was referred to the Bladder and bowel clinic at our hospital following their advice she has been a lot better with far less accidents. No drinks after 6 pm. Avoid caffeine. No green tea. Squash drinks with barley are good as they do not irritate the Bladder. Avoid alcohol. Plenty to drink during the day otherwise Bladder can be irritated by strong urine.

 

[patsy56]

because B has to get up for toilet often with his Parkinson's the DN said we should try the sheath cathater and bag we have tried but B says uncomfortable "but maybe in 6 months time" he said...

 

[Wishful]

Our GP doubled the dose on the new medication and so far there hasn't been any bed wetting. He does still go several times a day and has accidents but I can live with that.

We don't sleep in the same room, apart from everything else, he has Sleep Behaviour Disorder and it's not safe for me.

Thanks again for all your answers. It just seems everyday brings new problems to be solved.