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.

I will find out about the CHC funding.

I did report the call bell to the manager. I also discovered this had been done a second time. I think the home failed in lots of respects but amongst the bad were a lot of good people trying very hard in difficult circumstances.

Take care. She's in the best place for now, with people who can care for her better than in the home. Lots of us are thinking about you. Have some . Try to sleep.

I'm sorry to have to say that you shouldn't get your hopes up re CHC. I was told by the assessor that my mother would not qualify as she did not need specialised nursing. At this point, she was bedridden and on the LCP but needed only basic nursing care The hospital wanted to discharge her into a nursing home as they needed the bed for patients they could treat. The assessor spent less than a minute with her and skimmed through her ward notes.

Apparently, you only qualify if you have e.g. a tracheostomy, something that a nursing home assistant couldn't deal with. Dementia on its own is excluded.

I know she's not at this stage yet, but thought I should warn you.

Has your mum been self-funding up to this point? Apologies if I've missed that bit.

Yes mum has been self funding.

There is plenty of money for a few more years at least. I am not worried about that although I think it is wrong. What happens to people with no money and no one to speak for them?

I see the Daily Mail front page is all about patients dying of dehydration in hospital. It says most of these patients could be "saved" by rehydrating with fluids or by putting them on dialysis. What do they want- millions of people being kept alive on machines just to prolong their torture? So they can say we never let anyone die- we never give up? Of course no one should be dying in pain and discomfort but there seems to be no middle ground.

Those people get advocates allocated Downton. It's a lengthy process at least in my trust. It's worth asking about continuing care though - if her needs are more medical than social, regardless of her own money, she may be entitled to healthcare funding.

IME the drinks thing is tough. Many patients will only take a couple of sips at a time so you have to keep going back and offering them more. What this report is saying (and quite rightly) is that people shouldn't dehydrate in hospital when they'd otherwise make a good recovery. Dehydration can cause delirium, constipation, lot of problems and really shouldn't be necessary. However I agree that it's unkind to force it on people who are dying anyway. My approach has always been to offer food and drink to the dying but not to force it if they don't want it.

I'm glad your Mum is in hospital and responding in some ways to help. If she's not keen to drink, could you offer ice lollies? Sometimes these are easier to take than drinks. I can't imagine how tough this is for you so I just want to say well done for fighting for what's best for your Mum and hang in there.

Hi
My DM died this year, she too had dementia. She stopped eating solid food 4 months before she died. She took sips of soup & fortisip drink.
10 days before she died she refused all fluids, we coaxed a few sips in to her through a beaker, but all the family were in agreement with no drips etc ( don't expect they would have found a vein anyway) As a family we sat with mum round the clock. 24/7. We talked to her sang to her and held her hand. We all knew she was dying. She was only just 70.
It was grim. It was what she would have wanted though. She had no life left.

The problem with the drinking is this.

We were told (1st night) we could ignore visiting times and go anytime we liked. Yesterday I was turned away and told to stick to visiting hours. The nurse said that the staff nurse on the previous shift should not have told us that.

When I was allowed in there was food and drink and a cup of tea at the end of mums bed. She could not reach it. That is when mum said she was thirsty. She had a couple of sips of tea but it was cold. She drank a glass of water. Then the nurse came and said "aren't you eating Brenda?" well how could she if she can't reach it? There was no effort from anyone to encourage mum. It was then all cleared away.

So I know mum will not eat but I know they have to offer it just in case. But what is the point of it all being on a table out of her reach? She will take sips if encouraged but that is the first time mum has asked for a drink. Mostly she is unable to think about it long enough to request it. And if they will not let me in outside visiting- which excludes meal times- how can I attempt to get her to try something? Mum needs help to sit up and needs to have the cup put in her hand.

Right you need to speak to the ward sister and get an agreement that a. You can visit whenever you like (obviously respecting other patients privacy e.g. Going off for a coffee during ward round), b. you will come in and help with meals whenever you can and c. If you can't be there that a member of staff helps with her meal. If this isn't agreed to (it really should be) escalate it to the Matron.

Right- I have just spoken to them.

The dementia co ordinater has been in to assess mum and they are moving her to a more suitable ward. She was on MAU.

They are trying to get mum sedated to calm her, they said she is uncooperative with the tablets- why oh why are they still trying tablets? Anyway, have put something in her cup of tea and trying to get her to take it like that.

There will be no physio/OT assessment with regards to moving mum into a nursing home or for continuing care for the time being, I'm going up this afternoon.

Hello, I am very sorry to hear about your Mum. Both my Nans have been in a similar situation, we out a peg into one mostly for extra fluids and ease of giving medication but the Nan with dementia we let slip away. Like your Mum she stopped eating and drinking much, she wasn't able to talk but we knew she was at the end. We gave her little sips but not pushed upon her and spoon fed things we knew she liked rather than bits of whole meals. She passed away 2 or 3 days after stopping being able to take any sips. It was all very peaceful. It's so hard to loose someone but both the way she went and the couple of days before hand my parents spent with her were perfect and the way we all would hope to go

I just read your last post, is there any chance of a hospice transfer or transfer to a close nursing home ASAP even if you have to pay? My Nan was in her own room in a nursing home, my parents were with her throughout and had been singing along to the radio

downton, it sounds to me like you're stuck in a kind of feedback loop where nobody has sat down with you and asked you whether you (and your mum, so far as you know her wishes) WANT her to be supported to eat and drink, or to be given IV fluids, and what other medical/palliative care is necessary and/or appropriate at this stage. And sweetheart, I don't know if you're even clear in your own mind about what you want - which is understandable with everything that you're going through.

I don't think hospital is the right place for your mum unless she is on a specialist geriatric ward where they understand the issues of someone with advanced dementia and where someone like your mum isn't seen as a bed-blocking nuisance. And from what I know of NHS hospitals, such places are rarer than rocking horse shit. Is there a care home near you which offers end-of-life care for those with dementia? (I know that the home my mum is in can cope with this, and has clear procedures for discussing options with relatives, care protocols (skin integrity, mouthcare, support to eat and drink if the person asks for it, etc - similar to the LCP), etc etc.) Or a hospice, as some posters upthread have mentioned? Though if she is rallying then she may not be as close to EOL as may have been thought... either way, you need clarity from someone with a medical hat on as to what could and should happen next.

It's possible - and I admit I'm speculating here - that your mum may have experienecd some kind of event (TIA or similar) which caused her to have the fall and, at the same time, has caused her dementia to progress suddenly. (This happened with my mum - she'd been managing at home just about, but one night when I was there she had a bad fall and split her head on some furniture. By the time she had been patched up in hospital it was obvious that she'd deteriorated hugely over a really short period of time.) I think you may need to put aside how well she was before the fall and hip fracture, and look at how she is now.

Holding your hand a bit tighter.

Downton - are you also on the Alzheimer's website? They have a chat forum (although not as much traffic on here) and a helpline.

I know how frustrating dealing with the NHS is - my mum was in hospital for 2 months with bowel cancer about 5 years ago. (I think this is when her dementia first started.) Different illness to your mum but exactly the same frustrations, no guidance, little support, especially with feeding/drinking (she was bed-bound and very frail) endlessly trying to search for information. Don't be afraid to be forceful to get the information you want. Be prepared to do lots of digging and phoning. Eventually you will stumble upon the right (helpful) person and you will feel that the options are a little clearer.

If you are willing to tell me what geographical area you are in (by PM of course), I'd be happy to do some research on your behalf eg finding care homes that special in this particular area of dementia.

Just letting you know you're not alone.

Numberlock that is interesting- mums dementia started after she had breast cancer and a mastectomy. I think those kind of things are triggers.

Mum has been moved onto an elderly care ward- so that is good. They are still struggling to deal with her though, she is being very troublesome. They know she has a UTI but again, cannot get the antibiotics into her. The nurse ended up wearing them.

They have resorted to putting meds into her tea as that is the only thing mum will sip but of course she isn't finishing it, so only firefighting really. Mum has become suicidal. One of the nurses took me aside for a chat.

She said it is no good getting the OT/physio team to assess mum. That we need the Psychiatric Assessment team. She believes mum could be classed section 3 as she is a danger to herself and others. It is better if I try and go through mums GP rather than the doctors on the ward as it can take them a long time. She also said mum needs to be in specialist EMI care and that the hospital was not the best place for her. At last someone has been blunt with me and given me something to try.

Well at least that some kind of progress.

Was she in dementia redidential care previously rather than dementia nursing/EMI?

I would recommend getting her out of hospital ASAP based on experience. That was when my mum first went into care as it was fastest way to get her out.

Yes. Previously dementia residential.

She now needs EMI nursing.

Ok well you have an action plan now, are you able to start ringing round/visiting homes this evening?

Thinking of you.

I am shocked! How few homes offer nursing EMI care!

The websites say specialist EMI unit, then you phone and they tell you it's not actually nursing or that they don't accept patients with behavioural problems.

Or they don't have vacancies

Sorry to say I also found that, I moved my mum 3 weeks ago.

Persevere though, you will find somewhere, even if you have to look in a wider aware than you first hoped (depending if you live in town or country).

I don't know how bad she is, but if she were sectioned, I think the hospital would have to find her a place, but probably in a secure psychiatric unit, which isn't ideal. I know someone whose elderly mother was sectioned, had to be forcibly removed from her flat with police and SW in attendance. She had dementia, but it was her mental health problems that were considered the most urgent.

Hopefully, the psychiatric assessment might result in some better drugs which will help her mental state and enable the hospital to be able to keep her till a place is found. At least if she's playing up and causing trouble, they have more of an incentive to get her assessed quickly.

Have you seen the hospital social worker yet? They should be able to help with what happens after discharge. If it reaches that point. It doesn't sound as if she's eating and drinking enough to sustain life.

I'm so sorry you're going through this. My mother has dementia (early stages) and I dread its progress.

I'm so bloody angry on your behalf at al the administrative crap and bureaucracy you're having to deal with. The shoddy nursing and people not doing their jobs properly and not caring. I went through a similar thing watching my father dying - staff not noticing when he developed an infection, no-one to give him morphine when he was screaming in agony in his last hours. Things were better ij terms of nursing and caring 50 years ago.

Stay strong and look after yourself.

Love and hugs.

Can I just ask to see the hospital social worker?

Getting a straight answer or information is so difficult. The nurse who spoke to me was in the last year of her training as a mental health nurse. So I think she is keen and probably in the "idealised" frame of mind where everything is black and white.

I suspect that all the other doctors/ care professionals are unwilling to put themselves on the line and probably know there is little they can do, or how hard it is to get anything done.

Mum wanted to climb out of the window and throw herself off the building today. She couldn't get out. Then she told me to get away from her and jump out of the window myself. It is very hard to smile and be compassionate when every conversation is full of stuff like that.

Oh (((hugs)))