When a person with dementia fails to look after themselves properly

[InsulationFoam]

FIL is 89, has dementia, lives alone and his ability to look after himself has be deteriorating.
He gets himself dressed, but he is too unsteady on his feet to get in the shower. We are unsure as to what he does in the bathroom, but think he is giving himself some kind of wash at the bathroom sink. He emerges from the bathroom with his hair combed and wetted with water at least.

He is having meals on wheels for lunch, but has been otherwise independent apart from my SIL doing his washing and shopping.

Recently, he has been failing to get out of bed and is still in bed when meals on wheels arrive at 11:30am. This has meant he has been failing to take his morning medication which is for heart failure and to control blood pressure and prevent strokes. It has also recently become apparent that he is not reliably taking his evening medication.

We have recently got carers to come in the mornings to get him up, make him breakfast and to check he has taken his medication. Evening visits for a carer to give evening meal and check medication are going to to start in the next few days.

The question is that if he's stops maintaining the cursory strip wash he does at the bathroom sink, what we do next? The morning carers offer to help with washing, but he declines. The carers say they can't insist on helping him to wash if he doesn't want it.

It's OK for now to carry on as he is. I guess people have maintained personal hygiene by strip washing for time immemorial. However, if he starts not being able to do it and looking dirty and dishevelled, what do you do if someone refuses help with care?

Any thoughts would be greatly appreciated.

You must get an assessment by social services. Don't get confused about funding. He would have to fund "Care" but adaptations and equipment can and will be provided. We had two rise and recline chairs, bed lever (could have been whole bed), rails etc. we were just about to have a bathroom completely adapted and made accessible but DH died. All of this would be provided by SS.

You can get things that lower you into a bath - my Mum and dad used to call it the ducking stool

I think you can still get "attendance allowance" even if you have savings.
Age UK give great advice on these sorts of rights

Another one agreeing.

We've watched 10+ years of dementia in a relative, culminating in them attacking and trying to kill their wife, and then 6 years of horrifying decline. I wouldn't wish it on anyone.

He already has quite a lot of equipment provided after his last hospital admission (toilet frame, mobility trolley, perching stool, hospital bed, bed lever, chair raisers etc). The Early Intervention Team coming Monday are going to assess if he needs any more equipment /grab rails.
We don't think that the upheaval of having a wet room is a good idea. It would be too much for him I think as 89 with dementia and in poor health.
We will definitely consider getting Social Care to do an assessment though. Thanks for this advice. Will await the outcome of the assessment of the Early Intervention Team on Monday before doing this I think.

@InsulationFoam I didn't realise that you've already got equipment and adaptations so that is good news. I understand what you're saying about the accessible bathroom, it would be an upheaval. Is is possible to find a carer he trusts who could help him shower? I know it's not an easy thing to accept.

At this stage ensuring clean clothes will make more of a difference to whether he smells or not than washing. Does he change his clothes reliably?

Our experience with MIL is that local council social services showed no interest at all with MIL having a similar level of savings meaning she'd have to pay for her own care rather than have social services funding care. It was the first question they asked over the phone, i.e. whether she'd be self funding or not. They then just said to contact local care providers to do assessments etc and pretty much hung up on us.

This. Adult social care will have a self neglect pathway as part of their safeguarding policy. If you feel he is self neglecting ask them about thr next steps in relation to this. They will need to assess his capacity. Does he have a formal diagnosis of dementia? If not them this will be needed from GP. In fact I would also make GP aware of the self neglect, as NHS and social services do not communicate and will be useful to have this on his NHS records.

Hi op,

We have the same with my mum, she is very frail and has taken a complete dislike to the shower or bath, and was mainly giving herself a wash at the sink - although has started to let me help. Some things i got from a med supply company - think it was ukmedi were body care wipes, and bed bath washcloths which were easier for her to use once she got her head round it.
The body care wipes were good so that she could give herself a wipe in the bathroom.
I also got these shower cap things that have shampoo in them - its like a dry hair wash which she seems to like

@taxguru you're talking about only the funding of care, not all the other add ons like adaptations and equipment, access to Falls service etc.
We too had to find our own carers and I think that's fair. If you're paying, you can decide what you want a carer to do, number of hours etc. it took a bit of trial and error but we had a lovely man who would come at around 7.30am (use key safe), get DH up, check if bed clothes needed changing, do any washing of his clothes and sheets etc, help him get dressed. He would then get him breakfast, pop to the shops if he wanted something and he organised all his medication. Once or twice a week he might take him out or accompany him somewhere, sometimes with me and sometimes not. He could be here for at least 1 hour up to 7hours. We had a back up person who could do 2-3 hours twice a week as one person can't do every day. You're not going to get that with a funded carer. We're paying, we get what we want 🔨 (gavel)

Yes, so far he is putting on clean clothes, which is really good.
The carers only started a week ago. Perhaps when he is used to them, he might allow them to help with a wash down.

Thanks for all this information. That's very useful to know about.

It doesn’t sound brutal at all. My DM had Alzh. for around 15 years all told, went on to 97 and her last years, with advanced dementia, were pitiful to witness. A swifter end would have been much more merciful, and TBH I know 100% it’s what her former self would have wanted. She’d have been utterly horrified to see how she’d ended up - doubly incontinent, no clue about anything, not recognising any of her family, no longer able to hold even the simplest of conversations.

In her case (she had the general constitution of a rhinoceros) there was no ‘striving to keep alive’ and TBH we wouldn’t have allowed it anyway, but too many people in such a state are kept going just because it’s now possible to do so.
To me that is verging on cruelty.

So very sorry to hear about this. It must have been awful to go through.

Thank you, but the awful thing is that it’s not uncommon. Unless people are lucky enough - I use the word advisedly - to die of something else before dementia is advanced, this is how they end up, and far too many families have to witness it.

So far, FIL's dementia isn't too bad. He has got heart problems, which I suspect are advanced, poor thing.
He is currently having an ultrasound in hospital due to suspected DVT in leg.

We had FiL (with dementia) living with us for about a year. He was unbelievably stubborn about bathing or changing clothes. I had to watch like a hawk for when he went to the loo first thing, zoom in and swop his clothes for a clean set - which I’d have ready. He never noticed!

I couldn’t get him to bath or shower at all, and couldn’t push it, since the tiniest thing was liable to send him into a really scary rage. He’d just about do it for dh, though - only at the time, dh was often away for work for 2-3 weeks!

After a year we found a nice care home for him - TBH I was on my knees with stress and exhaustion.

I will freely admit that until we experienced it, we were blithely, utterly clueless about dementia and what it could mean in practice. ‘Just getting a bit more forgetful - how hard can that be?’
Talk about finding out the hard way!

It may be that he has trouble standing at the sink. I suggest you buy him large wet wipes which will be easier for him than soap and flannel. I would niot put too much emphasis on cleanliness. Lots of old people stop cleaning themselves as they get older. Unless he is very overweight he is is unlikely to sweat very much

You can get a perching stool from SS or buy one, I don't think they're expensive. Argus sells a lot of mobility equipment

My late DM stopped washing/bathing but insisted she was still doing it. She would put a skirt and jumper over her nightdress and then just take off the day clothes at bedtime. She had stopped leaving the house by this time. Social Services came and did an assessment (my parents were self funding) and they arranged for a lovely carer to call. She chatted away to my mum and got her to have a bath (she had a bath seat fitted). She called twice a week to bath her and wash her hair and would get her to change her clothes too. I never thought mum would go along with this, but the carer had a lovely way with her and just swept mum along. Get the right carer and they know how to approach the person without them feeling self conscious

Thanks all for sharing your experiences. I have found every post very helpful and appreciate people taking the time to post.

He's been issued with a perching stool after a previous hospital admission. Only thing he currently uses it for at present is to put a box containing the papers he has read on!

Oh dear, I can't say the perching stool we had ever got used for it's actual purpose, if at all

Speaking very bluntly, dementia is terrible. Really terrible. If he’s not taking medication then maybe he might die of a stroke. As someone who’s watching a family member slowly decline with dementia, we pray she has a massive heart attack/stroke or dies in her sleep. Unfortunately aside from the dementia she’s in excellent health physically.