Not speaking up about needing to go to the toilet

Share your ideas about the practical side of caring.
bowlingbun wrote:
Mon Mar 12, 2018 10:02 pm
We have a phrase "elderly toddler". When I was potty training my sons (one with severe learning difficulties) I would produce the potty very regularly, not say "do you need the potty" but "it's time for your potty". Might be worth trying you making the decision for her? No promises though!
The phrase "elderly toddler" sums this up very succinctly. I recall when I was in early infant school I had an embarrassment about asking to go to the toilet. It came to a head when one day I deposited an accusing puddle on the bench. Discussions with teachers and parents followed, and it was nicely pointed out to me that it was OK, nay, the right thing to do, to ask when I needed to "go".

Many people suffering from dementia exhibit "living in the past". Hence they forget that their children have "flown the nest" and no longer live just down the road but in another part of the country. They sometimes say things like, "Jack hasn't been to see me for a while," when in fact Jack died 30 years ago. This sounds like another instance of living in the past - going back to early childhood.
Reading this topic through I remembered that we used to have a topic titled "You know you are a Carer when..............."

My post in that topic was along the lines of -

You know you are a Carer when you ask complete strangers in the coffee shop if they need the toilet !!!!!!!!!!!!! :shock: :shock: :shock:
My husband has no bowel control at all. He goes from being constipated for weeks, despite giving him meds to make him go and once they do start to work, he will have bowel movements, usually twice a day for the next two or three days.

Now, bearing in mind that he is bedridden, this causes no end of problems. I am unable to clean him as he cannot stand for more than a few minutes and needs bed managed so if it happens just before his carers are due than that's fine, I let them get on with it. Unfortunately most times he has no knowledge that he has soiled himself and it isn't until I smell it that I know he needs cleaning. He sometimes goes after they have been to wash and dress him, then I have to call out the emergency carers.

This escalated in December when they complained to the care department that they were unable to continue turning out for personal care. His social worker was involved and it has now been decided by them that the time has come for him to be looked after in a nursing home where he will have 24 hour care.
The council have agreed to fund him so now it's just a case of waiting for a place.

We already have had four clean up incidences this week and that's without medication. He says he is fed up with always soiling himself but I think once he is in the nursing home, he might feel better knowing that I am not bearing the brunt of having to do all the washing of soiled bedding etc.
Irene, you won't need me to tell you how sad it is that your husband now has to be in full time nursing care, away from home. However, I do think you are completely right in saying he will be glad you are not having to cope any longer with the 'burden' aspects of his care.

So many folk here whose caree has gone into residential care report that once the 'chore' aspects of caring are lifted from them (taken on by 24x7 professional staff), their relationship improves immensely. They can get back to being wives/husbands, daughters/sons, etc etc. At most, they become 'companion carers', spending time with their caree that previously they had to spend on all the 'chore' aspects (eg, endless bed washing, cleaning up, even cooking and feeding, etc). All the 'chores' are now done by blessedly 'someone else'.

The care home will, as you say, have all the staff and all the kit necessary, including hoists and so on. My MIL with dementia has been doubly incontinent for well over a year, but when I visit her 'you would never know' if you see what I mean!

I do hope you will fin a nice place for your husband - despite all the headlines to the contrary, there ARE good care homes - all three of the ones my MIL has been in have been lovely! Even the current one, where, for a while, she had to be in the rather 'grim' (inevitably, sadly) 'secure unit', (before she became immobile and therefore was 'safe' to be let out in to the ordinary areas!), is absolutely fine, and the staff are champion. Despite barely recognising me any longer, she definitely recognises the staff, and one nurse coming into the room, got a much bigger smile of welcome and her beckoning him over, than I go when I arrived! And that is GOOD, after all, isn't it?! I think so.

I hope the transfer goes soon and smoothly, and you can both 'settle down' into this next stage, sad though it is, which will have distinct advantages as well, for both of you.

Life when a spouse needs care is sad, inevitably so - but there you go. We take what we are given, don't we?......no other choice!
If someone needs to use pads it does not phase me, one of my carees has been in them their entire life through complex medical condition/needs. What hurts is they are completely self aware of the fact and the utter disdain on their face when the pad needs changing.. theres a candid yet child like sense of humour too though and when being changed you'll hear a little bit of giggling from them among the gagging in the room.

As a family we shrug it off, I'd be a half decent dad with the nappy changing/mopping up sick side of things if that ever came along at least :)

If the product is good it helps.. I had to fight for 2 years+ to ensure somebody got the right product to suit their incontinence needs
Irene, you have "soldiered on" far too long. I hope that place comes quickly for you.
I buy Brian's pads off the internet. He has nappy type ones that fasten round his hips. The Nhs will not supply us with them and give us large pads which are fine intil he has a bowel movement then all hell lets loose as they don't contain the poo and it goes everywhere (sorry). I also buy bed pads to save the bedding. His catheter fequently leaks and the bedding would be soaked without a pad. The Nhs pads are like tissue paper and tear very easily. One week I had to spen £70 just on nappies and bed pads, thank heavens for his attendance allowance.

The district nurses had the cheek to ask me once why I was buying the nappy pads and I had to answer that they had promised to get me some but none had arrived so I had done what Brian and I always did, and that was to get them myself and not rely on other people.
James_1802 wrote:
Mon Mar 12, 2018 8:27 pm
Something that's started occurring recently is that, if there is a visitor at the house, my nan won't speak up to say that she needs to use the toilet - either by herself or with my grandad's help. Consequently, she ends up soiling herself and only says she's going to the toilet when the visitor has left. This usually means my grandad has to help clean her up. Fortunately, she's wearing pads. We thought it was just with people she's unfamiliar with (like when the social worker called in last week), but she's also done it when one of her other grandchildren (albeit seen less often) visited last week.

I think there have been instances during her stay in hospital where something similar has happened - I can't accurately recall - so it doesn't feel like it's something she's suddenly started doing. It's just become something more frequent with more visits to the house by various people.

We think it's that she's either i) embarrassed by the need to say that she needs the toilet or ii) that she doesn't want to cause an inconvenience to whoever's visiting (the logic of this is driving me up the wall). We could explain to her that it's not a problem, but she'll forget and/or it probably wouldn't sink in anyway.

She'll be staying in a care home for a couple of weeks from this weekend, so we're wondering how it will pan out in a new environment with unknown people around (both care workers and other residents).

Does anybody have any suggestions on how we might avoid these situations or at least manage them better? Or is this just the way it's going to be from now on?
How are things now, James?

Melly1