Refusing personal care, meds, food in care home but reasonably healthy...

[Mum5net]

Friend's DM is 92 and has a few historic issues with stomach ulcers which do not appear to be causing pain right now. She was admitted to care home in May because of poor mobility and worsening dementia but has not settled especially well. Prior to care home, for 18 months carers called at her home where she grudgingly accepted meals and medication but couldn't tolerate help with personal care.
Since May and admission to care home, there has been a bit of a stand off with her personal care but most days she is washed and dressed and spends time with other residents. (My friend is eight hours away so only visits every 4-5 weeks but can see on the CH's social media that her DM is included in activities.) Her eating has been flagged up since May as being a problem - she refuses her meals frequently so care home staff try to supplement with extra fluids and protein shakes..
Three weeks ago friend's DM had Covid and while wasn't especially poorly, her eating became even more erratic. Fast forward three weeks and she is now actively aggressive when offered personal care, meds and food. The GP has been asked to visit. She is noticeably thinner but increasingly determined and will scratch and bite staff who come too close. POA and DNR are in place. She is beginning to lose her strength but her anger doesn't appear to be because she is hungry or in pain.
Can anyone share similar experiences.

It’s very very difficult isn’t it? My DF is in a care home (for the last 3 years) and he has certainly had his moments.

This won’t be the first time they have had something like this. I couldn’t just read and run. At one extreme they can get her classed as having no capacity but I do worry about us patting ourselves on the back and clapping when people reach a great age and completely ignore the fact that a lot of very elderly people have little quality of life. My DF is just existing and my DM (90) who lives independently is just waiting… it’s very sad.

Thank you @urgen. There will be obviously be an army of residents in a similar position up and down the country. This I fear is the next stage on for the 'care home refusers' who eventually have a crisis and do get taken into care. Friend has given update. GP prescribed Lorazepam. Friend spoke to her DM yesterday. Everyone's hoping it decreases her DM's anxiety.

My MIL lives in a care home. It's a nice place and they take care of their residents. Despite dementia MIL is still quite capable of being annoyed or angry and I think there are days when she hugely resents her incapacity..I have a lot of sympathy with that. On these days she's uncooperative and throws her food around.
There is a DOLS in place to ensure she receives essential medication.
People in homes have so little autonomy, this is probably their last line of defiance.
As long as she is receiving or being offered appropriate care, and has capacity and any mental ill health considered then I would imagine that the staff will do as much as they can.

You could have been describing my mum! It took four staff at her care home to take her to the bathroom and get dressed as she was so violent towards them! Most of the time they left her and kept going back until she had calmed down. She resisted any medical intervention and even bit the doctor once when she was taking her blood pressure! She had fairly advanced dementia and obviously during the pandemic we had not been able to visit much so she had little awareness of where she was or who we were.

initially she ate well and enjoyed the food, especially the cakes but after about 18 months she began to refuse to eat or drink. This followed a UTI and hospital stay for IV fluids. After discharge once she was rehydrated, the cycle of not eating or drinking started again, made worse by the bed sores acquired in hospital and a second bout of Covid. In the end we agreed with the care home and her GP that she would not be admitted to hospital again and mum was left in peace to die in her own bed. Although the staff spent hours encouraging her to eat and drink, she just became weaker and weaker and once her organs began to fail, she died peacefully six weeks after her last hospital visit.

Her story is not unusual, the care home were used to their residents refusing to eat or drink, almost os if they had decided that they’d had enough.

Unfortunately this is so common. I work on a care of the elderly ward and I would say 1/3 of the ward refuse meds and food and theres nothing you can really do about it. they have no appetite, they dont want pills, they want to be left alone to be comfortable.

Even in hospital you cant force anything, it's just about reasoning and keeping them calm and hoping the come round but possibly accepting that they wont

My mum had advanced dementia. Was bed bound and although still a little verbal didn't make much sense for the last 3 months (most of the time talking to dead relatives). She ate less and less and became quite skeletal. I didn't want her forced, and the GP agreed she should be left to die in peace. She did like a cup of tea in a sippy cup and the odd mouthful of ice cream but if she shook her head that was fine with me. She was never distressed and very smiling, just didn't want to eat.

A week before she died I had a phone call from the district nurses who dressed her legs every day. I was bollocked for her being so thin and told to make home made casseroles, purée them and make her eat. She died a week later. It was very distressing for me.

@Beamur I think my friend is on this page
@Ilovetocrochet I also have a DM in a care home and I have seen this happen. It couldn’t have been easy for you or for her.
@Cats4life i know staff frequently go above and beyond to try to encourage but I guess there comes a point where they respect the decision made
@nokitchen that sounds really tough for you. You must have felt awful. I’m not surprised you still bare the scars.
I think my friend is mentally preparing for these scenarios but isn’t sure how she will be able to support her DM best as she’s so far away.

My DM is in a care home and it's very hard to get her to shower.
I've been there when a staff member and myself tried to get her to just have a wash.
It's so distressing to see a lady who was always clean and tidy giving up.
Mum screams if they try and wash her clothes.
The home have started to show her the washing machine and her clothes going in.
Then put in the drier.
Fortunately she is eating better than she has for a while. Especially the cakes.

It must be very difficult for the staff and of course trying to relieve pressure is very important but I do find it depressing that so much effort goes in to trying to resist the normal progression of dementia. Not eating/drinking is a feature of the disease.

Would it help her at all just to hear that she is doing everything can by having professional care for her dm and by having input from the GP?

@PermanentTemporary I think my friend is now aware her DM's decline will be reasonably rapid and that's all there is to it. The Lorazepam is making her calmer in the mornings when things are normally at their worst. Thank you everyone.
@Proudofeveryone Sorry to hear things are equally difficult. My own DM has a packet of large chocolate or milky bar buttons always on hand for the staff to deploy to ease her through the day