Visiting DM is traumatic when I can't help

[FruHagen]

My DM had a serious stroke before Xmas, was hospitalized and discharged in January to a nursing home. She cannot eat or drink or toilet alone and is paralyzed down one side. She has a PEG in her stomach. She can speak though.

She had dementia before the stroke and it's gotten a lot worse, she is hallucinating and mixing people up and talking about people from her early life much more than recent family figures. She is quite angry and depressed about the situation.

I am making this post because I have been visiting her in the nursing home and it's so sad and traumatic seeing her like this I just wanted to share and hear others stories. Or get some advice.

She is absolutely desperate to have a drink and her mouth cleaned, there is a lot of smelly gunk there that I am cleaning out but I can't do it constantly which is what she needs. I find the smell overwhelming and it lingers on me for days. It's so strange.

She is desperate to leave and keeps saying "get me out of here". I want to help but her care needs are enormous.

How do you think I can handle this and be stronger. I feel so anxious I am waking at night a lot now.

Sorry to read this. Have you spoken to the manager about your DM's mouth? The staff should be cleaning her mouth for her, but it sounds like she might need to see a doctor too.

It sounds like she's dehydrated. There is a thickener that can be added to drinks to stop choking, as well as using a sponge to keep the mouth moist.

Think you need to raise this with the care home, that's a pretty poor level of care tbh.

Would she be allowed to suck a damp flannel. Could use it with good hand , keep it on a tray nearby. Not very hygienic but seems the least of her problems. So sad.

Sorry to hear about your mother OP. She could be dehydrated and constipated. This could also explain the odour. If she’s suddenly more confused/ hallucinating she could have a urine infection.
Are you allowed to help with oral care when you are visiting and to put top up water down her PEG? Maybe you could talk to the staff about being more involved in her care while you are there? It sounds as though your mum could do with some more support. Might need something prescribed for her mouth too.

It sounds like very poor care by the home. She shouldn't be thirsty and they should be taking care of her mouth. What's their explanation for not doing so? Has she seen a doctor about her breath?

As for her dementia, there's nothing much you can do. Just listen to her stories and let her chatter on. Don't correct her or argue with her (so much easier said than done. Lol.) There's no way you can take on her care needs, so you need to put that out of your mind. At the same time, if the home aren't looking after her, you need to think about moving her elsewhere. I'd be pretty cross with them, to be honest.

Re. the mouth, I would ask for the staff to increase the frequency of her mouth care, and if you find the mouth care difficult yourself, are you able to schedule visiting times so that the staff know to have her pristine and ready for a visit at x time?
I would also ask for a doctor's review; if her mouth is very smelly and gunky, she could have oral thrush. Or at least, they could prescribe a product to help with mouth care. There are some gels you can get that would be better for someone with dysphagia. Also if her mood is worse than usual, you could ask doctor to review that too.

Please don't go giving her a wet wash cloth or thickened fluids before asking the doctor or RN. This could cause her to aspirate and potentially cause pneumonia.

As for you; it is hard, I understand. Could you have shorter visits? This could decrease the incidence of you needing to do mouth care, and also if she gets fatigued during longer visits, the confusion and mood could be worse. Maybe a 'short and sweet' visit would be more enjoyable for you both.
Does she like music? Her favourite music could help improve her mood, and also take the pressure off having a coherent conversation. People also tend to remember song lyrics for a long time too, I find it really joyous to see someone with severe dementia singing along to old music, when ordinarily they can't even have a conversation.

I would also give yourself permission to get lost in her world; trying to reorientate someone with dementia to the present time isn't always the best thing to do. So if she talks about people from her past, talk along with her. You could bring in some old photos to look through and chat about.

Don't even begin to guilt yourself into feeling you should look after her because she says so. You know that the right decision for her health is to be in care. Please remind yourself of that.

Hope that helps a bit.

I’m so sorry you’re going through this. I wonder if you’re feeling stress/guilt that you can’t care for her yourself? Just thinking because you’ve mentioned how enormous her care needs are. I think it’s totally normal to feel that way but you need to remember that actually you probably wouldn’t be able to care for her adequately all by yourself 24/7.

I think you should raise the issue re her mouth with the carers, they should be assisting with this. It sounds (as others have said) like possibly thrush or some other similar infection.

Has she had her formal assessment for her needs yet? My DM had hers last week that I interjected myself in to, and it was a helpful place to have things like that formally noted if they haven't already been.

Thanks all. I followed your input and have a few wheels in motion now to try and improve the situation.

Yesterday's visit was extremely distressing with quite a lot of very upsetting stories that hopefully are made up.

Today was different as she was calm and sleeping. Her breath is in a pattern of deep breaths and then long periods when she doesn't breathe at all, her hands are cold too.

I wonder if she is nearing the end.

@notaflyingmonkey I remember your Mum was in a similar position to mine a few months back. We are waiting still for the CHC assessment after her move to the nursing home. The 4 week funding she was given has run out now. What is happening with your Mum?

The four week funding is not quite that - the gov has to fund up to the point that there is an outcome from the assessment, so if the assessment hasn't happened yet, they should still be paying.

DM had her assessment last week, she is eligible for funded nursing care, which is £187 a week. We are moving her next week to a place that will cost her £1,100 a week - and that was cheap.

My visits have been extremely stressful. Unfortunately her dementia on top of the stroke has meant that she struggles to make sense of what has happened and so is hugely distressed, telling me she has been kidnapped, that I must call the police, etc.

@notaflyingmonkey thanks for the input on the funding, good to know.

My DM has also struggled massively to understand what is going on as the dementia on top of the stroke has, as you say, made everything worse.
She doesn't understand or remember that she is immobile after the stroke and thinks myself and my siblings have somehow orchestrated this in order to get her house. It's absolutely tragic.

If you are going through this also here's some and a virtual hug.

Same with my DM. The stroke paralysed her left side, but she hasn't understood that. Despite the fact that she can't actually use her arm and leg, she thinks she can. Dementia is cruel.

Feel free to PM me if that would help OP

If she's PEG fed (and thus failed a swallow test) she should be NIL by mouth and should NOT have liquid introduced into her mouth. Oral care using antiseptic on swabs several times a day is paramount otherwise she may develop gum disease and lose teeth, especially if she's on anticoags after the stroke and gums will bleed if infected. Can they check she has no bridges or false teeth left in her mouth which could be causing infection and foul smell. Get the nursing home GP to refer her to a dentist if it continues.

I hope she is reaching a peaceful end.

It may well be in her best interests to have some oral tastes at risk of aspiration, in fact; an option for her could be ice chips (just ice cubes broken up in a plastic bag, one at a time). It is unlikely the home will agree to this without a review by speech and language therapy- refer her yourself if they agree, and talk to the team about what you would like for her. A dirty mouth is a big risk in itself and to be honest what risks are they trying to manage here - what about the risk of a miserably dry and dirty mouth? So what if her life is shortened a little bit by a chest infection?