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.

Yes - they really let you know how they plan to manage this. (((Hugs))) though. It must be heart breaking.

It is not so much that they are withholding treatment but that mum is refusing. I tried to get her to have some paracetamol syrup today- she took it for me yesterday but wouldn't have more than a tiny bit today. I'm not surprised though, it's nasty white stuff, I'm sure if it tasted like calpol I would have had more luck.

She is in pain though, in the small of her back. I'm not sure what is causing that, maybe sitting in the chair, maybe the UTI/ kidneys not working properly. She had another fall at the home last weekend and although paramedics were called at the time, they felt she was ok- it could be something to do with that. It is so hard though when mum cant tell me.They won't let mum lie in bed but she finds it painful to sit. The main dementia doctor is back on the ward tomorrow, she has been off for a week so she hasn't seen mum. Maybe it will get a bit clearer if I am able to speak to her tomorrow.

Ask if they can put morphine patches on to relieve the pain. Mum has those when she refuses her meds. My heart goes out to you.

Also- what made me a bit mad was a catering assistant came around taking orders for tea. She read out a list from the menu and asked mum what she would like.

I said that I didn't think mum was eating at the moment but was there something soft and would someone be able to try and get mum to try something? She said that she though mum was eating but would go and check. She came back with the nurse who said no, mum wasn't eating but they would offer her something anyway. So the assistant proceeded to read the list out again, looking at mum expectantly. Mum could barely shake her head.

Now mum will say no to anything, fair enough. I highly doubt she will eat whatever they try, it has been weeks. But surely they must know you can't read a list and ask someone at this level of dementia to choose from it? Mum hasn't the capacity to take in a list, remember what was on it and make a choice. I am probably being stupid about it but I felt very cross that there is not even that level of understanding.

Thanks pudcat yes they mentioned a patch. I will check if they've done it tomorrow.

Your Mum really could be my Mum a couple of months ago Downton. She was still not eating when she moved to this nursing home and I thought the end would come soon. But no she is still here. She will eat soft food sometimes now but can go for days refusing. I think the hospital they have to be seen to be asking (tick lists etc). I know they used to read it out to Mum who had no idea. In the end they made sure that she got yogourt each meal time even if she refused it.

Well it was a bit mixed with the doctor.

Firstly, mum isn't stable yet. She is up and down, different every day. Yesterday she was down, we were back to the " I want to die " business. She is also asking to go home to her parents. They died over 45 years ago.

So they have said that they are keeping mum until she stablises, so that they can see what is deterioration and what is just delirium. So far so good. Mum is drinking but not eating. The 2 meds they are trying to get her to take are hit and miss. She has walked once with the frame but the rest of the time she can't, or wont. She cannot even turn over in bed.

Then the doctor shocked me by saying that when mum is ready they hope she will be able to go back to her residential home. I just cannot fathom this. They have failed in their duty of care. I explained about the staff issues, the call bell etc, that they had admitted that they couldn't provide the level of care mum needed. They were bullied into taking back mum after the hip fracture and were promised things that did not materialise by the hospital. I'm pretty sure that if they assessed mum they would not take her back anyway.

The doctor was reluctant but agreed that SS would have to assess mum in that case. Now I'm doubting myself. Is it better for mum to be somewhere familiar, with a doubt over appropriate care? Or better to find somewhere to match her needs at the risk of further upset due to being moved? I don't know anymore. Surely however she is when she is stable, she will only get worse eventually and then what. I have seen the EMI recommendation in mums notes. Despite me telling them that mums home is not EMI, they want to push for her to go back there in time. Are they thinking of what is best for mum or what is easiest for them?

They just want the bed back. Sadly.

I think you need to find somewhere that can provide the level of care she needs now and also bear in mind that she will probably deteriorate further. The residential home have already admitted and shown that they can't look after her.

You are doing an amazing job advocating for your mother, and the hospital are not pulling their weight imho. I'm a doctor, and DH is a liason psychiatrist with specific interest in dementia, delirium and end oflife care. They can do better than this.

Can I suggest you go to PALS and request a case conference with the medical and psychiatry teams, and social work?

Have a list of your major concerns, maybe divide into acute problems with the hospital, problems with the care home, and future planning around end of life care.?

PM me if you want more advice. Good luck.

PALS is the patient advice and liason service.

Not quite making a complaint, but very effective in getting things moving. Formal complaint would be your next stop.

Hi Downton. In your position I would research EMI homes with a view to getting your mum out of hospital and into residential nursing home as soon as possible.

Any future home would want to carry out an assessment of your mum anyway and their staff could advise you and guide you based on experience with previous residents. Your mum won't be the first person to come into EMI care direct from hospital.

I personally don't think that hospital is a good environment for elderly people, especially with dementia, as it only adds to the confusion and trauma.

I would ring SS as well and ask them what to do. I have found them to be very helpful. They gave me a list of nursing homes with write ups about them.

Keep pushing, get a SS assessment. She clearly needs more than a residential home can offer. It sounds to me like she needs a nursing home. Visit some homes, ask questions and don't get bullied into a decision you don't agree with. I doubt the residential home would take her back anyway, her needs are likely to be beyond what they can manage.

It sounds like she may be nearing the end of her life anyway so any potential home would need to be able to give palliative care. People with dementia sometimes reach a point where they refuse to eat and drink and we can't force them, although if he infection were better she might feel more like eating small amounts.

DowntonTrout, your mums situation at the moment is similar to my grans who died earlier this year. She had dementia and after a fall, it all got worse. Soon after my grandfather died and that seemed to really make her worse. Maa stopped eating for a few weeks before she passed away. Before that she was eating very little. One boiled egg in the morning that my mum would feed her and after that nothing. She had some energy drinks that we'd talk her into sipping but she'd get agitated if we tried too hard. In the end, it was just water and then not even that.

Nearer to the end, Maa began asking for her parents who had died years ago. It was heartbreaking to see her in such a state. She hardly recognised any of us but did rember when she was reminded. Surprisingly, she recognised my husband better than she recognised me or any of her own children.

In the end, she stopped talking and would just sleep all day. We were quite worried about how much she used to sleep but realised only afterwards that it was part if the process of her body shutting down. We tried giving her medication or water ourselves but despite being such a weakling she'd push us away with so much force and determination. A stubborn woman right until the end we'd joke. But yes, she did not like us forcing her at all. She won that one too.

She died very peacefully, with all of us around her. All her grandchildren and her children. She stayed at home with us and we had kept a vigil at her bedside for months.

Looking back, there's nothing that we could have done differently for her. I can understand your frustration and its only out of love for your mum that you're feeling this way but my gran was at home with us and she was still the same. There was someone with her at all times. At least four or five people in the house all there to make things comfortable for her and tend to her needs but she had no needs; she just wanted rest.

Having been through something similar I can only offer my thoughts and prayers and empathy. My advice is to spend as much time with her as possible and to sit with her holding her hand, telling her anything you want her to hear. She'll take comfort from your presence and if she can't see you, your hand in hers all day with let her know you're there. This is what we did with my Maa. That we had time to sit with her and care for her at the end made the grieving process so much easier.

I know you write your siblings are not there, but you're the lucky one. You're spending time with her, caring for her, being the one familiar presence around her. In the years to come you'll treasure these moments and will be glad it was you sitting there with her.

Lots of love and hugs to you.

So I didn't visit for a couple of days as my DD was going back to school in London and I needed to take her down. She is boarding for the first time and it is a wrench for both of us.

Mum seems to have stabilised, but sadly, she has settled into the the miserable, I want to die state. still not eating, refusing meds etc. she just lies in bed, covers over her face, the nurses try to get her up and into her chair, as it is better for her, but they don't have much success. mum is in pain too, but they feel that the stronger med patches are not required and things like codeine cause other problems long term, so mum is being offered paracetamol, which she will not take.

She is having to be watched 24 hours, as in the night, mum does try to get out of bed but as she can't walk, she is high fall risk. They are doing the forms to start the SS assessment. The staff nurse understood my concerns about mums previous home and agreed it is not going to be right for her anymore, but stressed that hospital is not the best place for mum right now. I worry that we will be in limbo between mum not needing full nursing care but being well beyond residential, and that an EMI place without nursing could be ok now but could, very quickly become the wrong option, and then mum would need moving again.

I had a meeting today for the social services assessment. It was utterly bizarre.

The assessment form had been filled out by one of the staff nurses. It became clear that much of the categories A,B,C had been ticked incorrectly. In fact, I said at one point that it seemed to have been filled out by someone who had not been involved in mums care, or did not know her at all.

The social worker, myself and another staff nurse went through the whole thing and the assessment changed from 1 A, and the rest C's, to 5 A's, 4 B's and a couple of Cs. Even the Cs became questionable when we looked at the mUST scores and things like whether mum was losing weight. We called the care home to get mums records and mum has lost 6kg in the last 2.5 months. 2.5kg in the last 3 weeks.

SS have gone from saying mum was borderline nursing but possible residential if there is any improvement to saying she has hopes of CHC funding and is asking for full (I can't remember the term) assessment to go to panel. She also said I was within my rights to make a complaint as the information given was so wrong. This is all backed up by the staff nurse. She also pointed out that there was no investigation or X-ray after mums second fall and no queries as to why mums back is hurting. There is also no record of mums chest X-ray from when she was admitted with breathing /swallowing difficulties, or that mum used inhalers for her bad chest and so was at risk of pneumonia. Mums inhalers have been stopped, because she will not take them, but that does not mean the condition is not there. She said it is also unacceptable that mum is on no pain relief just because she refuses the paracetamol syrup.

There was so much misinformation that I can't even list it here. Even mums hip fracture is in her notes twice as left leg when it is the right. It also mentions mums hip replacement- which she has never had!

Oh bloody hell Downton, what a shower of shite! I have no advice I am afraid, but am thinking of you. Xxx

How worrying! I would certainly complain. That's a huge discrepancy.

When will the PCT assessor see her re CHC? You should certainly try to be there for that as they have to take your input into account. But they will be inclined to minimise her condition because it comes out of their budget. We were told by SS to appeal the decision if it went against CHC, but SS had a financial interest in CHC being awarded, which probably doesn't apply in your mother's case.

The panel did overturn the PCT assessment and granted CHC - on the grounds that she needed an experienced dementia nurse to be able to judge whether she had changed her mind re not eating. We received this notification 3 days after she died.

Hope they sort out pain relief now. The least they could do.

Poor mum and poor you :(

It's so miserable isn't it? I hope things will have changed by the time we get to our 80's and we can have controlled pain and sedation much bloody simpler.

Keep fighting downton, your mum deserves dignity and to be comfortable

Thanks Thymeout that is a useful piece of information, and one that I will certainly make clear in the assessment.

There are so many things that they will suggest a carer, rather than a nurse, will be capable of. I will beg to differ.

The social worker was brilliant. Our meeting lasted 2.5 hours! She is fully on our side. I will go through the assessment criteria and try and find the points that cannot be disputed- so that in the next assessment I have all the information to hand.

Two other things which were border line were the MUST and Waterlow scores. Mum is already in the 21+ high risk, for MUST but her BMI is currently 20, she scored 0 in a couple of areas, specifically weightloss, this was incorrect as mum is losing weight, but as she had only been weighed once they had no comparison. Once in 3 weeks! They should be weighing every week. So I will make sure mum is weighed just before the assessment which should show more weight loss and maybe mums BMI will be lower- so scoring higher points.

The Waterlow, again high risk, there are signs that mums skin is breaking down in 2 areas, but she does not have a sore yet. She was a B for that, but if a sore develops it would be another A. Obviously I am not wishing that on her, but it seems inevitable if mum remains in bed, even with the air mattress and turning her.

I really need to understand and make the distinction between carer and nurse and find the things that are specific to mum. It is not about the money, it is about mum being classed in the right catergory to be in the right place, because if she does not get the correct care she will be back in hospital within days and then WILL need nursing, or will just die.

M has another UTI. Well I don't know if it's another or just the same one that did not clear up as mum was so hit and miss with the anti-bs.

She has been prescribed another course, although, of course, she has to actually take them for them to do any good. I could smell it as soon as I got near her. Awful, strong smell, I could still smell it after I left the hospital .

We have the date for the CHC assessment meeting. Next Thurs. so mum will be in the hospital for another two weeks at least. This worries me.

Oh dear - UTI won't be helping her confusion, either. Know what you mean about the smell. Mum had an infected ulcer on her leg and I used to wash out my nose. Can they give ab's by injection, as with cats? Actually, sometimes I think we'd be better off with vets instead of doctors. (Sorry if I'm being too flippant.)

Have they sorted her pain relief?

You know- I have said this all along. They shoot horses don't they? If my dog or cat was in half this distress I would put it down. people will argue that that's an animal and mum is a human being. But the differences are animals can't communicate with us about their pain or assist us in doing things which are going to help them recover. Well, mum is the same.

The only thing she can say with any conviction is that she wants to die. She begs me to allow her to do that, or to help her do that. It is, perhaps, the only thing I CAN'T help her with.

They have not sorted her pain relief. I think it's because an injection would also be a sedative. That would almost certainly hasten mums demise. While she is alert they can say they are offering food, meds, etc, sedated they would have given up. Ridiculous really.

I took a little pot of pineapple in. Mum ate a few pieces, I thought. All of a sudden she just spat it all out. She had chewed it, but not swallowed any. I think this is a cognitive thing. She will swallow fluid because it is an immediate reaction. The fruit, she chewed but forgot to swallow, then finds it in her mouth and spits it out. Sigh.

I don't have any advice as I am inexperienced with anything to do with your mum's situation but I am thinking of you and hope you can get the support you need very very soon.

Thank you