My mum hasn't eaten for 16 days, possibly longer.

[DowntonTrout]

I don't know what to do. It could be as long as 3 or 4 weeks since she ate anything solid but she may have had a bite of toast or a spoon of pudding. She is not drinking either and is now just refusing everything. She is dehydrated and very weak.

Mum has dementia, but was doing ok in her residential home. Then she had a fall and fractured her hip 5 weeks ago. She wasn't really eating in hospital but they discharged her anyway just over 2 weeks ago. It looks like she hasn't eaten since.

What happens now? If they take her back to hospital and put her on a drip she will be rehydrated, but for what? She is so unhappy, she says she just wants to die. I don't know how to help her, or comfort her. The staff have murmured about end stages but say it is up to us. I suppose they mean intervention, or not. There is no quality of life left but I feel asif we are just leaving her to fade away and die. She is 6 years into the Alzheimer's but it robbed us of my mum a long time ago.

So what can a nurse do, that a carer can't?

What needs does mum have that can only be met by a nurse?

Turning, lifting, mobilising = carer.
Feeding, fluids, = carer
Toileting = carer
Medication= carer

I need to know what, specifically, differentiates "nursing" care, from care.

Feeding, fluids - choking risk? Can your mum actually swallow solids?

Medication - as above. And she is refusing treatment.

The big issue for your mum is non-compliance. I know someone who has been cared for successfully for more than year in a nursing home after several strokes. She's bedridden and demented but cooperative, so the nursing care is primarily supervisory and carers do most of it. She doesn't qualify for CHC.

But your mum has behavioural issues, not to mention suicidal. There was a case in the news the other day of a cooperative elderly patient who choked to death on a spoonful of porridge.

I think her residential home has already said they can't cope? And the doctors say she needs a nursing home? I think the issue is not between carer and nurse, but nurse and specialist nurse.

But hopefully someone who knows the rules and regs can help. Surely they have to take the behaviour of the patient into account? What's safe for one could be disastrous for another.

How are you bearing up? I do feel for you.

Downton sorry I have just managed a couple of days away. I needed the break. As you know Mum was moved to NH from her care home. I was told that it was because in the NH they could cope with Mum's infections better and she would not have to keep going into hospital. And this seems to have been the case. They have got antiBs prescribed for Mum without a dr having to come out. They can also give morphine injections for pain relief. They can dress Mum's legs if the skin splits with her water retention without calling in the DN. And they look after Mum's stoma bag properly. HTH

Thanks pudcat hope you managed to relax a bit.

I feel more and more dispirited as the days go by. On Saturday mum was looking better and was bright and cheerful. We looked through some old photographs.

Yesterday she was back down in the dumps. Initially when I arrived she was quite cheerful and pleased to see me but after a few minutes she was stuck in the vicious circle of what am I doing here? I want to go home. I want to die. Where is ( her DP). He died 18 months ago. I can't face telling her again, but because somewhere at the back of her mind she knows he's dead, lying isn't an option.

She ended up just pulling a blanket over her head and I honestly feel it just distresses her, me being there, and after I have gone, she doesn't know I've been there anyway. It feels so pointless. It is getting me down.

I also went through her notes. Again I found discrepancies. In her FRASE scores, not documenting her previous fall and broken foot, and another 0 saying she had no significant weight loss in the last 3 months. These scores are taken into account for her assessment. There is so much wrong and so much that needs to be corrected for them to get a true picture. It feels like a mammoth task and i am going to have to argue so many points. I am dreading it.

Sorry to hear you are still going through all this. In the next couple of years we will probably face all of this with DPs mum. At the moment she's probably a little better than your mum, happy mobile and eating. She will have to move out of her home next year and it's possible she will then be unhappy and angry and angry with her children. She's very determined, a delight when she's got things her own way and difficult when not.

We looked after her for two years and I found it unbearable. You are doing an amazing job just to keep going in a very difficult and unfair situation. Your mum has every reason to be grateful and appreciative to you but she's just too ill.

You've said before 'they shoot horses' and I totally agree with that sentiment. I hope if I get diagnosed I can get to Switzerland in time.

I know that visiting does seem pointless at times. I get very worked up when I know I am going to see Mum. If I feel my visit is making her worse then I just have to cut it short. She gets cross most times when I leave whether early or later, but I know half an later she has forgotten I was there. Apparently she is back in bed again as sitting in a chair, even a reclining one has cause a pressure sore. So keeping her on the air flow mattress and turning her and moving her every hour is helping. I am going today so will see how things are. She is now seeing my Dad (died 1953) every day.

In her FRASE scores, not documenting her previous fall and broken foot, and another 0 saying she had no significant weight loss in the last 3 months. These scores are taken into account for her assessment. There is so much wrong and so much that needs to be corrected for them to get a true picture. It feels like a mammoth task and i am going to have to argue so many points. I am dreading it.

That is so bad. You would think that they would try to get it right so that your mum was not taking up a bed. I wonder if your Mum's ups and downs are connected to the amount of meds she will or will not take. Hope you get some answers.

Good news today. Or, at least, better news.

We had the full assessment meeting today. Everyone very nice and helpful. It will go to panel on Tuesday, but at the end if the meeting they said they expect mum to be awarded CHC funding.

It's not really about the money. It's about them agreeing that mum now needs nursing care as opposed to EMI care, and about now being in the system and getting ongoing assessments. I am now free to find a nursing home for mum, knowing what her needs are. We will find out the panel decision on weds and I have every reason to believe it will be a positive outcome.

That is good news Downton Hope you find a good NH. Have a look here.
www.carehome.co.uk/care_search.cfm

Enter your area in Search and then look at each one. There are details and reviews for the NHs and you can also access inspection reports. Go and look at the homes without an appointment.

Some good news at last.

Panel passed mum for CHC funding. We have found a nursing home, which I am happy with, but which would not have been my first choice- had there been other choices with free beds. But hey ho.

Mum has done a bit of an about turn over the weekend and is calm, happy and mobilising- a bit. Had the assessment been done on her today- she would not have got the full funding although she is still "nursing."Of course, the nature of her illness means she has these troughs and highs, but it is a relief all the same, that we are finally moving in the right direction. Who knows what is to come and if she will continue improving or if she will deteriorate again.

That is good Downton. Let's hope the transfer goes smoothly and your Mum settles in well. I know with my Mum there are highs and lows, but considering she was only expected to live for a month in April, you can never tell what will happen.

The transfer seemed to go well on Friday.

However I am having concerns already

The first time I visited mum was up and dressed. Fine. But she was refusing to eat and refusing meds. Again. DD managed to get her to eat a whole bowl of sponge pudding and custard. She will do things for DD that she won't for anyone else. The nurse was concerned about her refusing though and seemed surprised. This is one of the basic issues with mum and so one of the main reasons she requires nursing care. Not sure why they are surprised by it- I thought they would have experience in dealing with it but I know they can't force her. Anyways....

2nd and 3rd visit- mum is in bed- curtains closed- mid afternoon. Mum has no walking frame, the hospital did not provide one and the nurse is not aware mum needs one. Again how can this be? I fetch her old one from the previous home.

So mum has not been got up. I ask if she has eaten- there is no food record for that day. There are 4 untouched drinks on the bedside cabinet. I hold the drink for mum with a straw and she drinks. How do they not understand that a drink on a table is no good. Mum will not reach out and take it, but will drink when it is presented to her.

I glance through the notes and see that the pain relief gel, being topically applied to her back and hip is being applied to the wrong hip. This is something that I flagged up in hospital. All her notes said left hip, it is her right. There is a big scar running down her leg!!! Despite me telling them twice in the hospital they have still passed on incorrect information. This is not the homes fault but still. It's rubbish.

The most scary thing is that the nurse queried if I thought mum needed a bed with sides ( she had the sides up in hospital) because the previous night they had found mum in the lounge in the middleof the night. She had got up and made her way there herself - with no frame remember. Mum is high falls risk. This will have taken mum some time to do as she cannot walk, even with a frame to support her it will have taken her a number if minutes. So without, in a strange place, in the middle of the night, I have no idea how she did it.

I'm sorry that was so long. I thought getting mum into nursing care would ease our worries a little. But she is even less supervised than in hospital and even more worrying is that they don't seem to know how to deal with her.

Oh my goodness this is not right. You now need to have a meeting with the NH manager/senior nurse and go through your Mum's handover notes and make sure they know what she needs. They are right in that they cannot force your Mum to eat or drink, but need to know to put it in her hand. Mum has a hold folder full of food records, when they turn her etc.
I wish you were near me because I would reccommend this NH to you.

Know it's not right pudcat and I feel so dis-spirited. Battling every step of the way is taking its toll.

Mum will go downhill very quickly if this continues. Not to mention if she falls again. My DD can't go in to feed her every day- but it goes to show that mum will eat if the right approach is taken and she trusts the person. But that would take time, effort and a lot if 1-1 support. I'm not sure if anywhere can provide that amount of care, then there's all the other stuff. I will see if anything has improved today and have a word with the manager.

Hope you had better news today Downton - I saw Mum today and she knew me - a good sign. But I was a bit disappointed to find her in someone elses nightie. All Mum's clothes have Cash name tapes in and this wasn't even named. They apologised. It will take time for your Mum to let anyone strange feed her, I know my Mum was nearly a month without proper food. And now eats like a bird and will spit food out if she doesn't want it or can't be bothered. There are lots of residents being fed in Mum's NH, and the carers are really patient.

We have had the same thing with the clothes. I just shrug now. The other day a carer brought a red woollen coat in to me and said she had found it in the lounge and had asked mum if it was hers. Mum had said yes. I had never seen it before. My DSIS said "oh well mum says it's hers- how good that she remembers something!"

I'm afraid I looked at DSIS like she was mad. Mum will reply yes or no to any question, because she knows it requires an answer. However that is the sum total of mums understanding. The coat wasn't mums, another visitor came looking for it!

Anyway, the thing about the bed. They have not given mum one with sides because a) she has not fallen getting out of bed, so believe she is safe to do so ( right- until she does fall then?) and b) they worry that mum will either try to climb over the rail (really???) or that she will get her leg stuck an injure herself that way. Apparently the sides are not there to prevent mum getting up, just to stop her falling out. Oh.

Your DSIS has no idea!! I would push for the bed. My Mum is immobile and still has sides up. In fact as I walk past the rooms I think most of the beds are nursing beds. The sides of the beds all have like extra large cot bumpers on them. I suppose to prevent getting legs stuck and bruising.

I have kept checking your thread, Downton, and wondering how your mum and your family are all getting on.

This thread is from 2013.

it was like that with my dmil in the end. i felt it was her last way of expressing her wishes and asserting herself really. she had spent 6 months more or less in a bed in a care home. she had had enough and so had we in truth. it was pretty unbearable though.

oh bugger. Zombie that somehow came up as active

Hiya I’m 20 years old and I’ve just had a baby 8 weeks ago and my nan won’t eat anything she’s been like this for about a week or so and she’s so depressed I tried to make her eat but she keeps refusing and going mad. What do I do?

Justa, do you want to start your own thread, the original one is five years old, you may get more replies.