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'm not 100% sure it's the same everywhere but where I work we do a social work referral for anyone who might need it (automatic when they're from placement). They get allocated within a day or so and then take it from there. However you can ask to call the s/w department and talk to the 'duty' s/w -they will take on any urgent work and cover for those who aren't available. They might be able to answer your initial questions.

Thanks. I will ask about that tomorrow.

Yes you can ask to see the hospital social worker. Everyone has a right to be assessed under the Community Care Act. You should also push for the CHC assessment, again everyone should be at least considered especially as she is needing nursing care. There is a short 'checklist' if she meets a certain threshold then the full assessment will need to be carried out, you should be involved in this and have the opportunity to give your opinion and feedback. The Social Worker can lead on this and should get info from the ward. Unfortunatly there are very few emi nursing beds available in most of the country, where are you?.

As your mum is self-funding, I would just arrange everything yourself with the new home. They will want to come and assess her anyway.

That's what I did, it was one less person to deal with.

Sorry you are finding the visits so hard, I know how you feel.

I hope you can have at least one evening 'off' from it all soon.

I feel your pain re funding a care home that offers EMI nursing care. When my mum went into her home (when she just needed EMI residential, though with an option to upgrade as and when the need arose) it was the only home in the entire county which had spaces for both residential and nursing. And that was only because it was newly built and therefore not full! It's full now...

I spent two whole days on the phone ringing every care home in the phone book, because nowhere could I find a list of homes that offered the right care. So screamingly frustrating!

PS I second the suggestion of the Talking Point board on the Alzheimer's Society website. There are some incredibly kind and helpful posters on there. One called GrannieG was particularly good.

Argh, sorry for multiple posts! littleblackno, as the OP's mother is self funding, won't the social worker refuse to get involved? That's what happened to us, anyway. We had to deal direct with the care home/home visiting agency etc.

Downton I am sending you hugs. My aunt died last year aged 102 and when I visited the nursing home with mum I was her whipping post. She told Mum I had put on weight and to send me to Siberia to lose weight and then she said she had a better idea, that Mum was to put me on the roof of the house and leave me there. She also made unpleasant comments about what I was wearing. I think she thought I was the 14 year old who wrote to her every week from boarding school not the 43 year old niece I then was. The day she died we were there till 3pm as we had to go as I had to pick up the little girl I was Nanny to from school. As we left she waved at us and thanked us for coming. She died at 7pm.

As she is self funding social services would be less likely to be involved but she is still entitled to an assessment and can ask for help in finding a home. CHC is not affected by your financial circumstances. I would push for that assessment to be done now, if she doesn't meet it now she may do soon and they you will have previous information on record to use (its all about evidencing everything - I sit on the funding panels for these things)
www.gov.uk/government/uploads/system/uploads/attachment_data/file/213138/NHS-CHC-Checklist-FINAL.pdf
you could do this yourself and take it to them - that usually get the professionals taking you seriously. It pisses me off that if someone is self funding they are less likely to be getting funding and support they are entitled to. Your mum will be getting the FNC paid but the care home can sort that out wherever she moves to. www.nhs.uk/chq/Pages/what-is-nhs-funded-nursing-care.aspx I hope this helps.

Liverpool Care Pathway?? Lot of bad press recently, but I believe if carried out properly humane

Also make sure is receiving all benefits she's entitled to, ie Attendance Allowance at the higher rate and Nursing Care contribution.

Neither of the above are means-tested and every bit extra will be handy as the fees will be higher in the new home.

Regarding social services, I'd be inclined to put your efforts into finding a home you are happy with. As I say, they will want to carry out their own assessment, regardless of whether ss are involved.

I think at the moment, the hospital has duty of care for her. Whether she's self-funding or not, they can't just discharge her into a vacuum. There has to be some liaison. So, yes, you are entitled to see the hospital SW. (But willing to be corrected, if wrong. It may vary between PCT's.)

Ime, everyone has their own agenda. The hospital will want her bed when they've done all they can do for her medically. The SW will probably be wanting to see you to find out where they can discharge her to!

In our case, the LA was involved because my mother had been in her own home with visiting carers, partly funded by them. But because she owned her own home, she/we would have to sell it so she would be self-funded in residential care. (The doctors said she could not return home.) The LA would pay for the first month, I think.

So they then had a battle with the PCT over CC. Neither wanted to pay for her. Both sent assessors to the hospital and we were informed so we could be there.

She was given a date for discharge, practically as soon as she arrived. When she was put on the LCP, my agenda was that I didn't want her to be moved. I asked how close to death they would move her and they said Cheyne-Stokes breathing - which I thought was appalling. I knew she was dying and wanted to be at her bedside, not looking for residential care.

She would have been discharged to an emergency bed in a nursing home in her LA, which wasn't even in the same county as the hospital.
Fortunately she died before this could be arranged.

In your case, it sounds as if it could be more long-term and my mother didn't have any behavioural issues. But the protocol might be similar in your hospital.

littleblackno that is interesting. I had read through the CHC checklist earlier but I see it was revised last year. I would say mum is a mixture of Bs & Cs. Mostly Cs. Though whether professionals agree with that- well who knows. No As. The checklist I read earlier was moderate, severe etc- is that the old one?

We do not have FNC paid either. I think mum has higher rate AA. Unfortunately I do not have PofA. Mums late partners son held it along with his father until he died, since then, of course the son has been rather unhelpful ( I have never met him, he claims to care what happens to mum, he has never visited and was responsible for evicting mum out of her home when his father died so he could sell it- don't get me started my blood boils!) so I can't even make decisions without going through him.

I wish we could just get her sedated to get some breathing space. The doctor prescribed mum 3 days of sedation meds. They have not managed to get any into her so far.

I'm sorry Thymeout that sounds dreadful.

They really shouldn't call it "care" should they?

When they do the assessment for chc whoever is filling it in should record what you feel she is and what they feel she is and if there is any difference of opinion.
Your mum will not have been recieving FNC if she was in residential care, only if she is in nursing home.
I'm not sure what the previous checklist was, this is one i've been working with for a few years. Were you looking at FACS (Fair Access to Care Services) This is different and relates to social care not NHS services that is banded at critical, severe, moderate. - I know it's a minefield.

If someone has POA for her but is not acting appropriatly, or in her best interests, then you can contact the office of the public guardian www.gov.uk/office-of-public-guardian or speak to a solicitor and get some advice.

Have they considered giving her the medication covertly? ie hiding it in food/ drinks. It's not done often but can be done if they believe she hasn't got capacity and is in her best interest. It sould like it would be worth asking the docs about so she herself can get some rest and manage her anxiety better.

I really feel for you, it's such a horrible situation to be in make sure you look after yourself too. There's such alot to think about but the main thing is that she is safe and cared for. The hospital cannot discharge her unless she has a suitable place to move to. They will have a safe discharge policy which will say something along the lines of all appropriate professionals need to have assessed her and be happy that her needs are going to be met.

I hope some of this info is helpful, the last thing i'd want to do is give you more things to worry about or to confuse you.

If she gets 5Bs or more ages entitled to an assessment. To be fair, you can request the assessment even if she doesn't flag.

Thyme While the planned discharge date is standard - we have to have something to aim for - its different if someone is end of life.

That is awful about the discharge. We will always ask about preferred place of care. If its elsewhere we move heaven and earth to meet that need but I have refused to move people who look too ill. I can't think of anything worse than someone passing while travelling to their PPOC, I cancelled a discharge at 9am once because of this. Alternatively if the PPOC is the hospital we would honour that and review it every few days.

Having looked through what is available around here for EMI nursing care I am even more at a loss.

They are trying to hide the sedative in her drink, she is not touching food still, but she will only take a few sips or tries to throw it over the nurse.

I found out that she has had an X-ray on her chest. I suppose they are trying to see if there is a medical reason for the discomfort when mum swallows. They told me they could not let mum lie in her bed as she will get a chest infection, so they want mum to sit in a chair. Mum does not want to sit in the chair.

Up until the fall mum was content, quiet and gentle. She fell whilst out on a trip to the theatre with staff from the home so I'm sure you can understand how far downhill she has gone in the last 6 weeks.

I am ready to go back today and speak to whoever I need to speak to but I am fast running out of hope and energy. At least when she was taken to hospital and they were able to give her morphine that first night I had some hope we could keep her peaceful and let nature take its course, however hard that seemed at the time. Mum had other ideas though and is determined to fight us all the way.

I am going to ask for this to be moved into elderly parents. I think chat probably isn't the right place for it anymore.

Oh dear! Do hope you get some answers this p.m.

Could they not give her a sedative via injection?

Don't want to hijack your thread Downton but just wanted to thank Keep the Faith for her explanation. It's been 3 years now, but the whole admin saga still preys on my mind.

Up until the fall mum was content, quiet and gentle.

My mum was exactly the same until she moved 3 weeks ago. Now she's gone downhill rapidly and undergone a complete personality transplant.

Sorry to hear you've not had any success in finding an EMI nursing home.

Perhaps the Alzheimer's Society could help you, telephone number 0300 222 11 22.

Or the local authority may have a list of care homes, even if it doesn't specify what type of care they offer, at least you will have a list to ring through.

Also try:

carehome.co.uk
bupa.co.uk

On the off chance that you're in the North West/Manchester area, my mum is in an EMI nursing home.

Fingers crossed for you.

I'm on the other side of the Pennines Numberlock

OP
As I said up thread, the fall will be directly linked to the changes.
The bits and pieces from the broken hip - particularly marrow tissue - flowing around her system are a known cause of rapid deterioration.
Make sure the people in the hospital are aware of it.

Yes they are aware of the fall. Mum had to have an operation and a pin put in so it's all there in her notes anyway.

It was better tonight. They had to sedate mum earlier as she was so agitated and so she was calm and docile when I got there. marvellous in fact.

They are also on with social services and the dementia team with regards to assessment and I am feeling a bit better about it.

Could it be delirium?. That can last a while but is reversible. The sudden deterioration since the fall is what makes me wonder. It could be a consequence of the fall/operation but its good that they are looking at other possible causes like infection/constipation.

You may find she doesn't actually need an EMI unit, it may be that a dementia registered nursing home can meet her needs. That's something to discuss with the staff and social worker.

Yes that was the term they used when this all started after the fall. She should never have been discharged in the first place. Not eating, not mobile, she should not have been sent back to the residential home as they had neither the staff or facilities to cope with her. I was on holiday then so I didn't realise how bad she was. My sister was there but she is useless.

She does also have a UTI which I think was missed by the home and left untreated. I have to stop thinking about all the ways that mum was failed by the system, staff, doctors or I will drive myself mad. That and the guilt.