Dad and toileting issues

[3summer]

My SDad has Parkinson’s and it’s become more and more apparent over the past few months that he’s struggling to properly clean his bum. From what my mum’s told me there’s been incidents where she’s stepped in poo on the floor and found it in other parts of the bathroom - sink, hand towels, outside parts of the toilet etc. It’s just horrific. My mum doesn’t feel comfortable talking to my dad about it as he is really quite in denial about how advanced his Parkinson’s is and likes to pretend it’s not as bad as it actually is.
Has anyone been in this situation with a relative and found a solution where they can clean their own bum effectively without getting poo everywhere.

Could you request a referral to the continence service?

I really don’t think he’d be open to that at all. My mum’s trying to protect his dignity. I’ve tried to explain that in the long run addressing the problem and finding ways to deal with it would probably help him more than other people picking up on the poo situation which is what will happen.
I can understand it’s hard for him to accept the situation he’s in but equally get frustrated that my mum’s left cleaning his mess up and he’s not open to addressing it which would probably make things better for my mum.

Also he is continent - it’s just that he’s struggling to clean himself properly and it involves it getting in places other than the toilet. I’m guessing it’s his dyskinesia and tremor making it hard.

I have found the continence service extremely discreet.
They aren't only for pads and catheter bags!

Ah that’s good to know @Mydogisagentleman
I’ll look into that and see if I can possibly get my parents on board. Thank you for replying.

You can get wash/ dry toilet seats fitted (e.g. Bio Bidet) or replace the whole toilet with a wash/ dry one (e.g. Closomat or Geberit). There may be grant support available for this through their local authority, though waiting lists can be very long for this route.

Korean washlet? (All singing all dancing loo seat that washes and dries).
My Mum loved hers, not a PD sufferer just arthritis diabetes and entirely round old and not very mobile.

we invested in a toilet wiper aid (decades ago) like this picture. It helped mitigate things. But a bidet/toilet all in one would be an excellent solution if money was not an issue. https://www.lightinthebox.com/p/hemiplegic-patients-amazon-elderly-pregnant-women-free-of-bending-over-wipe-the-toilet-dry-and-wipe-the-toilet-paper-absorber-clean-the-toilet-aid_p9561787.html?currency=GBP&litb_from=paid_adwords_shopping&sku=1_244154&country_code=GB&litb_from=paid_adwords_shopping&utm_source=google_shopping&utm_medium=cpc&utm_campaign=17743989777&adword_mt=&adword_ct=&adword_kw=&adword_pos=&adword_pl=&adword_net=x&adword_tar=&adw_src_id=3516490533_17743989777__&gad_source=1&gbraid=0AAAAAD7vwYcvXmHRHAMIuE5IXZO_lQKOg&gclid=Cj0KCQjwy4KqBhD0ARIsAEbCt6g3IUD8e2SzlLPXppthAB3tltTjV5NEa61l6EN10PIUmG6nxHt10HwaAmjeEALw_wcB&products_id=9561787&products_name=hemiplegic-patients-amazon-elderly-pregnant-women-free-of-bending-over-wipe-the-toilet-dry-and-wipe-the-toilet-paper-absorber-clean-the-toilet-aid

Thank you everyone. I’ve found a decent looking wash dry bidet toilet seat for about £700. I’ve sent the link to my mum . I’m not sure he’s really able to use a bidet properly but this would be preferable to the situation they’re in at the moment even if it’s not perfect.

Contact Occupational Therapy at the local Council. They'll be able to advise on a solution or a special loo.

@3summer I'm sure you've considered this but check the controls of the bidet are likely to be ok for him, e.g. if he has problems with grasping or pressing buttons. One benefit of the whole toilet option is that there are very adaptable controls. My dad had no difficulty with his bidet controls despite arthritis, but he wasn't contending with tremor etc.
Good luck with it.

@Mwnci123 yes I’ll definitely double check. The one I’m looking at has what looks like a control panel with buttons you just press rather than a bidet where you adjust the tap manually.
It’s quite overwhelming that it’s got to this stage.

Unfortunately, if he is already struggling to realise he isn't cleaning himself properly, using hand towels, leaving poo throughout the bathroom, he is hardly going to learn to use a bidet properly or a long handled device to stick the toilet paper on. I'm not saying its impossible for him to adjust/learn, but just unlikely. Poo on the floor is also a massive risk to him (or your mum!) slipping and injuring themselves. Also, if he is leaving poo all around the bathroom- is he actually washing his hands/nails effectively, or spreading it around the house, door handles, sofa, cutlery etc?

Possibly wet wipes might be an option to help, but again, it takes dexterity and memory to know you've cleaned yourself properly. Does he have any routine to bowel movements? 1st thing each morning etc? Could your mum 'prompt/remind' him prior to this toilet visit? I agree, that a continence review might provide some ideas and help for your mum.

Does your mum have any support? Has he been assessed by adult social services? What are their longer term plans in terms of his care and respite for your mum?

@SM4713 all this things you’ve mentioned are mine and my sisters concerns. I don’t know how he can properly clean himself without someone doing it physically for him which just won’t happen at the moment as he is so against accepting any help/or facing up to the situation he’s in. We’re also worried about hand washing and hygiene.

He is terrified of being seen as not fully able bodied and is embarrassed to use any sort of mobility aid in public. It’s exhausting and frustrating.

He gets very constipated which is a Parkinson’s side effect.

I am my mum’s main support and luckily I live nearby. We’re very close. I go to support groups with her. She’s a very pragmatic stoic lady and her positive thinking gets her through most of the time but I am constantly worried about the effect this is having on her. I make sure we plan lots of outings and fun things for her just for a bit of relief from it all.

They’re currently making plans to downsize to somewhere more appropriate and getting things in place for the future when carers/care home may be needed. All this is led by my mum and I. My step dad won’t face up to anything.

He would be totally against getting social services involved but I will try to speak to them about the continence clinic.

Part of the problem is my mum is living very much inside the box so has lost a bit of balance over what situations are acceptable or not. I do feel comfortable enough to talk to her about these things though which is good.

My step dad would be deeply upset if he realised my mum needed respite from him as he isn’t able to cope with considering himself as being the cause of her needing respite.

My Dad (real dad not step dad who I’ve discussed in this post) has vascular dementia and hydrocephalus and is doubly incontinent in a full time care home where my grandma also lives (she has Alzheimer’s). I am so overwhelmed at times as I feel my life revolves around neurological diseases and incontinence/poo issues.
I have several siblings but they all now live abroad and my sister who does still live in the UK lives several hours away.

I feel mostly sorry for my mum in this situation as she tries to balance everything and I know things are only going to get harder for her.

That sounds incredibly hard OP. And I hear you on the bit about your mum losing track of what's 'normal' and accepting things that she never normally would. My MIL has Parkinsons, and it got to the stage where she was - like your stepfather - unable to wipe, smelling bad, dirty hands - and FIL just seemed to go along with it, as well as her wearing jumpers as skirts, falling over every few days etc. He was so 'in the box' he just accepted all these things as no cause for alarm 🙄

Someone is going to have to talk to your stepfather about this. The way it could be framed is that unless this is dealt with and a way found to adapt, your mother is not going to be able to care for him at home. He's putting himself and her at risk. And it's not safe (or dignified - there's nothing dignified about him doing this and not be aware of it, and everyone pretending everything is ok).

My step dad would be deeply upset if he realised my mum needed respite from him as he isn’t able to cope with considering himself as being the cause of her needing respite. Don't enable this OP. Why is your stepfather the most important person in the room? Why are you all dancing around keeping him happy at your mother's expense? If you and your mum can't bring yourself to talk frankly with him, maybe you need to enlist a professional to do so - a continence nurse, his GP, a specialist Parkinsons nurse, a social worker. Your mum has the right to involve all of these services on her own behalf (as a carer). IMHO this is no longer a situation that can be kept within the family, you and your mum need to start involving the professionals and getting help from them.

@rickyrickygrimes thanks for replying. I said to
my sister last night that there’s going to have to be a massive intervention about this even if it involves me talking directly to him. Which will be horrific tbh.
You know what, you’re absolutely right. We are pussyfooting around him. I have so much brewing resentment towards him as he refuses to accept his situation and my mum is the one bearing the brunt of it. Even down to situations where I take my mum out to places to make sure she has some fun and he gets offended he’s not invited so then my mum asks if he can come along next time, resulting in the outing becoming all about him in terms of his anxieties of being out and the evening being anything but relaxed and fun.
My mum confides in me and I’m conscious that I don’t want to do something - like go in too heavy with this situation - and then she stops opening up to me.
I said to my sister last night if you wrote all these things down on paper you’d be appalled and say professional help is now required but my mum and step dad would not consider them to be in that box at all.
They’re on holiday this week so I’m going to go and deep clean the house and also look into what support we can get going forward.

I should add that he’s also just been diagnosed with prostate cancer which is another blow for him but has hopefully been caught in time.
I’m so conflicted between being so angry at him but also devastated for him at the same time. 10 years ago they would never have imagined this is how their lives would be.

... and so during the prostate cancer consultations your Mum has to get straight in there and be truthful about the toiletting difficulties... just put the information to the professional and ask for help.
I know he is scared but her husband is being incredibly selfish in his attitude.. she is and will continue to bear the brunt of the whole situation going forward.
She will land up in the same situation so many carers .. utterly broken... and many die before their partners...
Look after your Mum.

I think pity is getting in the way here.

It is of course absolutely tragic that your step father has Parkinson's disease (+/- some cognitive impairment / dementia which is frequently part of that disease?) and prostate cancer. It doesn't mean that his needs and feelings are more important than everyone else's.

I think a direct approach is needed. If necessary he needs to be told how selfish he is being and what the consequences of his continued denial will likely be (eg remaining at home becoming an impossibility). It will be upsetting and difficult but this situation can't continue, it's not safe for either of them. Professionals need to be involved.

Obviously, you need to get your mum on board with this so she's the person to speak to first. If really neither of them is willing to face reality / do anything to change the situation then at this point I think you need to be clear that you are going to back off as you find the situation too distressing. Your mum can choose to be a victim but you don't have to.

I know that is really harsh but involving you in this whilst refusing all solutions is also very cruel and unfair to you (but for some reason is relatively socially condoned - I don't think it should be).

Blimey Who could afford 700 quid for one of those toilets

Thank you everyone. I’m always second guessing whether my frustrations or worried come from resentment rather than valid concern so it helps to hear all this.

@Bonbon21 is right. The prostate cancer will get him in contact with the medical services, so is a time to raise everything (after all, who are you to know whether the toileting problems aren’t a side effect of the cancer? They have to be mentioned).

Sympathy re the cancer. But it is a slower growing one (even the aggressive prostate cancers are slow in the overall context of cancers in general). DH is coming up to his second anniversary of being diagnosed with Stage 4 prostate cancer and to the outside world he is as fit as ever.