Coping with incontinence. (TMI warning)

[NagathaCrispy]

(Don't read if you are at all squeamish!!! - with apologies for TMI)

Once again I'm in tears at the state of our bedroom!

My DH (78) has vascular dementia and is doubly incontinent due to having had several small strokes. He wears pads all the time, but I'm struggling to cope with his ability to cover every possible surface in our house in poo!! He poo's himself, goes to change his pad, doesn't clean himself properly, and then sits on the bed (poo on the bed covers, or - if I get there in time - a towel I put there to protect them), gets poo on his hands and it's everywhere including on light switches, the TV remote, door handles, chairs etc etc. I have to say, I'm getting to be a champion at removing it from any, and every, possible surface.

Of course, he also bed wets over night and I have a daily bed pad to wash.

Trying to get him to wash his hands (or any other part of his anatomy) results in loud arguments and swearing as he just does not realise that the "mess" on his hands is what it is!

I am absolutely at my wits end with it. Having to deal with it makes me literally gag, the mess, the smell etc, and I just cannot change a king sized duvet cover every day - the washing is off the scale, as I'm doing at least a load per day and often two loads.

If any of you good people have any advice at all, I would be very happy to hear it, as I'm not sure how much more of this I can take. For reference, I'm a 71 yo women, in reasonable health, but I'm exhausted - both physically and emotionally. Thank you for reading and apologies for the TMI.

I think he needs more care than you can give him. You can't burn yourself trying to provide that care to avoid facing up to that.

Getting in carers would be a good interim step but it does sound like he needs to be in a home at this stage.

Are you having any support at the moment from carers or continence services? Or Older People's Mental Health.

If not you definitely need it. But it does sound like his care is more than a one woman job right now, and he may need a care home sooner rather than later.

My wife is the same age as me, 77. She is incontinent and wears a pad. We now have carers four times a day. I am not sure that we need then that often. They wash and dress her every morning and get her changed for bed every night. I usually take her to her commode several times a day.
Having the morning and bed time visits keep me sane. I can manage the daily washing of clothes etc but having others do some of the personal care is such a help. She is far more willing to acept their help daily that if I was doing it.
Ask you local council social services about carers.

Two single beds. At least this would reduce your washing?

Kylie sheets at night to protect the bed and your husbands skin

Water proof duvet they are a strange consistency so not for everyone. But might work for you guys

Incontinence service for advice

Regular prompts to use the loo. And wash hands.

I feel your pain - it's more distressing for the carer trying to keep everything hygienic and clean than it is the incontinent loved one with dementia. I sometimes feel my daily life revolves around clearing up body fluids and the rubber gloves and disinfectant spray are permanently on the go!

Buy a couple of washable Kylie sheets for the bed and layer up, as other PP have said two singles might be easier so he can mess up his bed without you having to sleep near the mess, carers to take some of the load from your shoulders and give you a break, maybe double up on incontinence pants and inserts at night. Speak to your local continence service too as they might have some useful suggestions. I wish you the best.

Have you spoken to the gp? I think a referral to the district nurses would help to talk over options about care in the home.

It's so hard and there aren't any easy answers. The www.demcon.org.uk site might have some helpful ideas.

Best of luck OP.

Have you managed to enquire about respite care entitlement, OP?

hospital stryle waterproof duvets are a godsend as well. That means you only have to change the cover. And disposable bed pads help cut down on the washing.
Also you can buy pyjamas that zip up the back and vests that are designed to stop access to pads so it might stop your DH getting into the mess before you can deal with it.
Seen In and Fledglings websites are worth a look for more ideas.

Disposable bed pads are good - I always bought the largest size available. You can also get waterproof fitted sheets to go under the regular sheet. The only problem is that they can be a bit crinkly - it depends on whether the person can tolerate that.

Carers recommended Puppy Pads... I tried them once. Too small, though you could overlap them and they had a strange odour.

Incontinence pants really helped when I had a relative with this issue. Easier to whip them off and straight in a bin.

But, we also found getting frustrated and telling them to do x y an instead of gentle redirecting made things 100 times worse - even though our own (and your) frustration is totally understandable.

We took to asking our relative if they wanted to go before or after we were going - making sure they used the toilet even when they were wearing incontinence pants as they just didn't recognise the urge to go or the sensation they had been in their pants. It cut down on some, but not all, accidents and made it easier to deal with.

As another pp has said, there are specialist clothing which helps stop adults getting their own clothes off and making messes if he needs help to manage that anyway.

Thank you all for the ideas. We have a whole pile of Kylie type pads for the bed and I'm constantly washing them (a pain to dry!!). I do remind him to "go" from time to time, but it's just another thing on the long list of basic stuff I have to remind him about every day, and he gets very angry with me for constantly reminding him (nagging, or going on and on!).

I hadn't thought of waterproof duvets etc, so will look into that, although the bed is, of course, fully protected with waterproof mattress covers etc. So, today is another day. Let's see how we manage.

Thank you again.

With my grandfather we found a single bed (with rail) made the daily washing and bed changing so much more straightforward. Do you have the space to have separate rooms so you can have your own space?

I don't have an answer for the rest, but oh I do remember trying to track down the source of the smell so I could clean it up...

Are you in a position to finance twice daily carers? It would help to relieve some of the burden

If not, could you speak to adult social care in your area and see what assistance you may be able to get?

In the nicest way, you sound like my parent, who refused to acknowledge that the other parent needed more care than they could give, and we ended up at severe crisis stage, going from point blank refusing any form of carers visits one week, to putting the other parent into a care home about 10 days later.

Get some help in. It sounds like you desperately need it.

I work in an advanced dementia u it and this is very common. No answers I'm afraid. Even some elderly without dementia get in a pickle. Consider changing the type or brand you use of pads. For example pull-ups are great for urinary incontinence but challenging for faecal. Does he use pants or nets? Honestly I think it's time for professional care. Sad but unavoidable.i really feel for you and him.