When a person with Alzheimer's will not wash

[WitsEnd129]

Posting in AIBU for traffic as dealing with a very tricky situation. FIL has Alzheimer's and personal care is a major issue. He has carers in the morning. He isn't safe to get in and out of shower, so the carers are meant to be giving him a strip wash twice a week. Since the care package started 2 months ago, he has only had one strip wash. That was only because DH was there with the carer to try an persuade him into doing it. On all of the other occasions, FIL says he has already had a wash and probably believes this himself. DH has tried to attend on wash days on a number of occasions, but his Dad just says no to a wash, saying he had already done it.

We are worried that he is going to get infections if he carries on without ever washing.

I appreciate that the carers can't make him wash. Would FIL fare any better in a care home in terms of keeping him clean or would it be the same problem that the care home couldn't make him do anything he doesn't want to do?

Sorry @Halloweeeeeeeeenforgot to ask of he goes missing at all? Another way is to see if you can get him sectioned?

You need to log every incident of him going missing with the Police.

You also need to email his GP setting out exactly what is happening and say that you want to avoid an unnecessary Hospital admission.

Carers at home are in a tricky position as they are guests and often in a rush. So they might say, ‘morning John, shall we get you washed now?’ And he’ll say no he’s already done it. As you know your DH was able to get it done probably because he was more forthright and knew how to persuade his DF.

While your FIL is at this stage you’ll probably continue to struggle and I would aim at getting him properly washed and into clean clothes once or twice a week via one method or another. The care staff at home can’t do much more unless you have someone really fantastic.

Its a progressive disease so by the time he needs residential care he may have different challenges altogether.

If there’s any point at which his behaviour becomes unsafe to himself then a capability assessment is needed. If he’s unable to make safe decisions then his liberty to choose can be restricted.

Thank you, no he doesn’t fortunately/unfortunately go missing as he is agoraphobic. He has been in hospital a few times but released back home after a few days.

We don’t provide his physical care (although there is something going wrong on a daily basis that needs attending too), he has carers that visit but he doesn’t allow them in the majority of the time, he has cleaners and people that bring shopping but again is very hostile to them.

We are not going to get involved in any of the physical care, not that he would let us anyway. I am just wondering how others have managed to get them into a care home as we are told he has enough capacity to choose to stay at home regardless how bad the situation is.

This is so wise. Our instincts are always to try and get our loved ones back to some kind of normal but with dementia that isn't going to happen. In our experience, it was a question of trying to let the small stuff go, putting our foot down on the big stuff and knowing that would be fairly horrendous, and persevering with trying to find support and solutions even when they were never quite what was needed. I second the advice about the Elderly Parents section, it was a lifeline for me.

This approach won't work with everyone, but being creative and open to trying different strategies can be very effective.

We had to get carers in twice a week once my mother refused to let me bathe her. The ones who were most successful were experienced, no nonsense women who just got everything ready and kept her chatting. I used the same tactic if there was anything I knew she would refuse to do. Be pleasant, but don't offer an opt out. Before she knew it my mother would be in the bath and out again having her hair dried. I can remember having discussions with care staff who argued that older people have a right to make bad choices, however when dementia is involved I think you have to remember that they also have a right to the best possible healthcare (hygiene is part of that) and to dignity. Those rights need to be balanced against each other. Maintaining skin integrity and avoiding infection is necessary for them to be healthly and comfortable in their final years. I don't agree that it's just part of the dying process. Infected sores and ulcers can have a systemic impact and be very painful.

Caring for a parent or PiL under these circumstances is really tough and your relationship with them changes completely. I'd suggest a chat with the care team's supervisor to see whether they can incorporate some distraction techniques that could get him to agree to be washed.

I know people have mixed opinions about care homes; but some are excellent. Give it some serious thought. I wish I could have carried on caring for my mother until her dying day, but even though I felt it was a last resort and that I'd personally failed after years of struggling, I think she improved a lot once she had settled in.

Thanks so much all of you for your information and ideas. It has given us some new things to try.
DH has gone over this morning to try snd help the carers and get his Dad to agree to wash. It is 1.5 hours drive each way, so not local . We are hoping he will be successful .
FIL has had one wash in 6 weeks 😢

It's a nightmare and carers can't/won't force him. I think DH is going to have to step up, as I had to with my mum. She had always started her day with a bath using Chanel 5 soap and perfume,, but when she got older, and started smelling like an old sheep, I had to strip to my bra and pants and almost carry her into the shower. She screamed and smacked me repeatedly as I showered her and washed her hair. When I finally got her hair dried, and got her all powdered and perfumed and dressed in fresh clothes, she stroked her hair and said "Oh this is so nice, I don't know how people can bear to be dirty!" Meanwhile I was soaked, bruused and shattered. Did this about once a month until she went into a home, where they mostly used a foam cleaner and wipes to keep her clean, though I went in and washed her hair.

OP, go to your local disability shop, or ask advice from the district nurse, you can get foam cleaners and foam-filled "shampoo hats" which clean well and may be less distressing to him than ordinary washing.

That is a long drive for your DH.

It sounds like he is ready for a care or nursing home now.

It is a really long drive. Apparently DH did manage to persuade his Dad to have a strip wash this morning so we are made up! 😁

Time for a care home, by the sounds of it. Please tell me someone has POA?

A care home can't make someone do something they don't want to do, however there's more scope to keep trying, catch them at the right time with 24/7 staff so it's more likely that he would wash/shower.
I used to work permanent nights and many a time have bathed or showered someone in the small hours - because they're awake and think it's time to get up, so you use that to get the showering/bathing done and check skin integrity etc - you wouldn't wake someone to do it but when they are resistant these things need to be done for health and wellbeing and it's better than sedation or someone getting very distressed and upset.
I used to be the only person one lady would bathe or shower for - I looked like her sister apparently (so her family said) who had a no nonsense attitude, and I would go in and tell her that I'd had my bath, now it was her turn because we didn't waste the water. With dementia you've got to work with what you've got and use situations as they arise, a clean, calm person with intact skin is the important thing.

Awful as it sounds, we were 'lucky' that FIL had a fall relating to a UTI that was serious enough to land him in hospital, at which point MIL was able to say 'I can't lift him, I can't keep him downstairs or upstairs, I can't get him in and out of the bath and I can't afford to get the bathroom remodelled so I can't safely have him home'. They sent out OH specialists to do an assessment and couldn't give her sensible answers as to how she could keep him safe at home.

She made sure all her 'arguments' were about his safety. The key things were that she couldn't keep him from falling downstairs, couldn't stop him getting into the kitchen and turning the gas on or eating the dog's food, couldn't be awake at all times to make sure that when he suddenly woke up at 3am and decided he needed to dismantle a light fitting someone was there to stop him, couldn't lock cupboards to keep medication safe (he jemmied them open because he didn't like things being hidden from him)...

And for the OP, he's no more willing to bath as such now that he's in residential care but at least they have the manpower, skills and equipment to persuade/pester him into a wet room regularly enough to keep him basically clean enough.

Not true. They will have much more opportunities to get him to wash. More people, more time. You cannot say a blanket 'care home will be no better'

@WitsEnd129Are the carers female? Just as most elderly women do not want personal care from men, some elderly men are embarrassed and upset to be seen undressed by women they don’t know. Might not be relevant in this case, but might be.

I used to fill the sink up and have all the towels and clean clothes ready ready and when he used the loo I'd hover and remind him and he would sometimes go into auto mode and do it himself. Sometimes I'd stand behind him and just repeat come on dad the water is getting cold and he would spring into action.

You need to ring the care company, they are being paid for the time to wash. And make it clear that the carers aren't sticking to the care plan. I used to be a carer and there are many ways round getting someone to agree to a wash - usually bringing in the bowls of warm water, towels etc and saying that it's wash day over and over. I used to get very frustrated when the carers who came into my Dad just did the absolute basics and were out the door within 10 minutes when the company were paid for a 45 minute visit.

Failing that, you could try some local day centres or care homes for bathing facilities.

We tried everything for my DM to stay at home but after a few years of her refusing to let carers in, as in barricading the door, violence to the carers, dangerous situations and my sibling and I going daily she was sectioned. It was the only way it was going happen. The non washing was the catalyst I needed as there’s no way her laying on her bed filthy dirty on filthy sheets because I couldn’t get her out of the bed to change the bedding was in her best interests.

We found with my Grandad telling him things were happening would make him going along with it rather than asking. He could manage to wash himself but just didn't bother.

Shall I get your stuff ready so you can have a bath? No it's ok, I'll have one later. (which he wouldn't!)

I've ran you a bath and put clean clothes out in the bathroom for you. If you pop and have a wash, I'll do a bit tidying up in here for you then we'll have a nice cup of tea.

That would make him go in the bath as the prep had already happened so it was more awkward for him to say no he didn't want to get washed.

@Halloweeeeeeeeenwho had said he has capacity and how recently was it?

We had the same issue with my dad, who we sadly lost in September this year just a few weeks after our little boy was born. He point blank refused care for so long that he was making himself ill and in the end the only way we could get him into a home - which was absolutely what he needed as he was a danger to himself at his own home and we couldn’t live with him - was for social services to get involved and tell him he couldn’t go home after his last hospital stay.

We are sadly now experiencing this with my husband’s dad as well. He’s not looking after his teeth and all he ever wants is sugar. He unplugged his fridge freezer and all the food had to be thrown. He also tried to light a fire in his fireplace a few weeks ago as it’s his main source of heating in the house, and he forgot to open the vents so the whole house flooded with smoke and he stank for weeks because he swore up and down that there was no smell and that he had washed his clothes and himself. We saw him the day after and his hands were absolutely filthy to the point that I took our son off of him (after MIL handed him over without checking first…) and kindly explained that he’d need to wash thoroughly to be around the baby as baby was born premature and is very, very vulnerable.

That did seem to work and he was keen to wash after that so that he could be near his grandson, but that visit was four weeks ago now so I imagine he has forgotten and we’re going to have the whole thing again. He’s staying with us for Christmas and as hard as it is, sometimes you have to be ‘cruel’
to be kind because it’s for his own safety. Is there anything like this you could offer as an encourager? Something or someone he likes but can’t do or see until he’s accepted help washing?

They key with getting someone with dementia to do things is not to argue with them nor to ask them if they have done something.
So instead of saying ‘have you had a wash?’ Or ‘do you want to go and have a wash?’, you go through and run the bath, warm water in the sink or shower on and tell them come on x the bath is ready for you now. Make it sound like it was their idea not yours. It invariably works.

But do not ever argue. Arguing and creating bad feeling always makes the situation worse. People with dementia hold onto feelings far longer than they remember what caused them. So if you argue and they feel cross they will feel cross the entire time, and far far longer than they actually remember what they are cross about.

instead accept what they say. Go off do something else. Have conversations about other things and go back a few minutes later and try the whole process again till you succeed. Once you get to know someone you with dementia well you will work out how long you need to leave it. Work out how frequently their specific conversations take to repeat and go from there.

The Care home my relative is in work miracles with personal hygiene. It’s so important especially with continence issues. The use a wet room too and I think it is because it is so warm in there compared to being in a house where heating was never on 🙄

100% @ihavelostthegame

I used to work for a company that ran care facilities and we had a couple of residential places that specialised in care for those with dementia and alzheimers. One manager in particular was awesome and very imaginative and she introduced a few things other sites picked up on and either copied or did versions of. For those who were reluctant to wash she would get a local hairdresser or barber in regularly, maybe a manicurist, and tell a few residents they'd won a free beauty treatment - and if you're going to have someone doing your hair/giving you a proper shave/pedicure you're going to want to be clean, aren't you? So let's get you washed...

How incredibly difficult for you to have the death of your DF avd now this eith your DFIL to contend with.

In my DMILs case her sense of taste and smell disappearing were one of the first symptoms of Vascular Dementia. Could it be that he couldn’t smell the smoke? How is your DMIL coping too? Has she had a Carers Assessment yet?