Crisis,need help, advice and support

I need urgent help. How long have I got to act? What should I do?

I’ve been caring for Mum nearby for 17 years.

She has rare neurological degenerative condition and the other day she had a heart attack. I was with her at the time, called 999 etc.

She was admitted to HDU and stayed on acute ward for 2 weeks. Consultant told me and brother that Mum has untreatable, pathological heart condition which may be hereditary. I told them which nursing home she wants to be in (near home, she has funds) the sister told me that the home “wouldn’t be able to meet Mum’s needs” and that Mum would be going to elderly care for “rehabilitation”.

Her condition has rapidly deteriorated at the Community Hospital and although I believe the staff mean well they are not meeting her needs.

She can’t stand, has a catheter, finds swallowing difficult, can hardly talk, agrees with everything/everyone (not like her at all!) but still able to read- although I’m not certain how much she is really taking in.

Help,please help. I want her needs to be met in the way she has always said she wanted.

I think you need to ask to speak to your mother’s consultant at the community hospital. They can give your their opinion about the purpose of the rehabilitation period and what the longer term prospects are for improvement. They can answer your questions about her apparent decline, should she return to the other hospital, etc. From what I understand, the community hospital has medical doctors readily available, more so than a care home would and that rehabilitation at the community hospital is at no charge.

Thanks for replying, Rosemary, I value your advice and hear what you say.

Unfortunately the consultant at the community hospital is off sick. They rely on the local GP.

Visiting Mum is a 55 mile round trip, she relies on me for communication- I can understand what she is trying to say because I usually know the context.

Here are a few initial thoughts, I know how distressing this sort of situation is.
Two main thoughts.

One relating to the care she is getting at the moment.
Have you spoken to the CEO or PALS at the Community Hospital?
Mum should be having all her needs met at the hospital, are the nurses neglecting her?

The other relating to the home she wants to go to.
Have you asked the nursing home that mum would like to go to, to visit mum and make their own assessment?
Would it be nearer to you?

They can’t keep mum in the hospital if she doesn’t want to be there.
If mum can still read, then that says it’s her body, not her brain that is affected.
Has any mental capacity assessment been done?
Do you have Power of Attorney?

I’m home all day, as I’m having some work done on the house, so will keep an eye on posts.

As ever Bowling Bun, thank you for speedy response. V helpful indeed.

Yes, I have POA for health & welfare as well as finance. Mum has enough funds to live at the “Top Dollar” nursing home for at least 6 years! It is very near me.

Neglect, hmm, I suppose I have high standards. The staff do their best in some ways but I have many concerns. PALS a good idea.

Great idea about getting a visit arranged. I’ll get on to this straight away.

Typically, I would think that rehabilitation in a community hospital would be a transitional period to enable time to improve under medical care before returning home or transferred to an alternative living situation. It’s not meant to be permanent.

So often we hear on the forum that patients are declared medically fit, discharged to inadequate social care. It would seem that the fact that your mother is receiving rehabilitation in hospital, could be seen as a positive sign.

If the consultant is sick, surely you should be able to talk to another doctor, or a senior nurse about the hospital’s rehabilitation plan and your mum’s concerns?

She has declined in every way during this “rehabilitation”.
I feel excluded from the process and need more information from everyone involved.

Thanks for the insights shared on here. This forum is the only place where I could turn for first-hand advice. Bless you all.

As you have POA, if you feel you are being “blocked” then demand to see the CEO!

In my area, it’s normal for the home to do their own needs assessments rather than rely on hospital details. I wonder why?!?! It means that if mum goes to that home, she has met either the Care Manager or Matron during the assessment, so they can know who is coming in, and can arrange whatever they think is needed.

It was only 48 hours between assessment and moving for my mum.
Your mum will be entitled to keep her DLA/AA if she moves into a home self funding, and should also be entitled to “Funded Nursing Care” AFTER a Continuing Healthcare Assessment has been done.

NHS Nursing Funded Care ?

Main CHC / NHS Continuing Healthcare thread :



Have you been given any time scale as to how long your mam may need this rehabilitation placement? Rosemary is right in that they are not meant to be permanent, but our local one does have some patients that been there long term, in excess of 6/12 months.

No matter how long, you are doing the right things in making all the enquiries now about future care. You have a right to ask for a MDT meeting ( Multidisciplinary Team Meeting). The principle of an MDT meeting is to discuss patients with other colleagues from the same discipline, and where indicates from other specialists in order to ensure the patient is receiving the correct advice, and that the treatment is suitable to their individual needs. The manager from the home your mam wants, depending on if they think they can meet her needs, can be asked to attend too. Some families prefer to do it all themselves, others request the involvement of social workers. Another avenue for you to think over.

If you have any carers centres and feel like you need support, you could ask if they do an advocacy service. Someone that would be there to support you, if you felt you needed it.

Keep us posted

x x


Thank you, fellow travellers, one and all. This forum is proving invaluable.

I have followed the first parts of this advice already and shall now set about digesting the other advice and links in readiness for tomorrow’s Multi-Disciplinary Team meeting- which I finally got myself invited to despite the hospital’s surprise and reluctance: “No-one has ever asked to be at one our team meetings before”.

I shall definitely read up on mental capacity etc.

Care home will get back to me re.sending a manager to meet Mum and establish her needs.

I have spoken to the rest of the family and to Mum’s best friend and have outlined my actions and plans they have all been v supportive.
But you people, where on earth would I be without you? Thank you, thank you. (Must stop now as getting emotional).

Your welcome.

Emotional ?

So am I this mourning … missing out on the Scousers to win 4-0 at 120-1 !

Yes,what a result for Liverpool.

Ok, so thanks to you people I followed advice and attended MDT meeting today.
Mum definitely has ongoing health needs that are best met in a hospital setting. Mum understands this and seems comfortable and well cared-for (although that wasn’t the case the other day,they seem to have “upped their game” since I saw Matron etc.

No plans to discharge her any time soon. Her condition is being actively monitored and her meds adjusted.The consultant saw her this morning and will see her weekly. I’m now in the loop and feel much happier. But knackered. Can’t remember what I’d be doing in real life.Not sleeping well. Just cancelled the holiday we were taking for 4 days from Sat.

That sounds better for mum, but I’m sorry you have decided to cancel your holiday, but understand that there is only so much anyone can cope with.
After the meeting you know that mum is OK, so it’s time for you to start looking after yourself better. Every time you think “I must…” give yourself a good talking to.

You don’t HAVE TO do anything in the next few days, except rest and give yourself a “Holiday at Home” instead. Meals out, up late, read a book, put some music on, whatever helps you relax. If you can’t sleep, get something mild from your GP.

Many of us have found that it’s only when the pressure is off that we realised just how shattered we really are. I call it “Falling over the Cliff of Tiredness”. You have been warned!

Thanks Bowlingbun. I needed “permission” for a break and you have just supplied it!

I’ve booked tickets for a concert with friends tomorrow night and may go and see Tolkien at the cinema on Sat. (Not really a fan of LOTR but hey).
It’s band practice on Sunday afternoon and the rest of the time will be spent in the garden or flumping about reading Circe.

Enjoy, keep reminding yourself you are going to have a Holiday At Home.

Update: so Mum spent 6 or so weeks getting re-ablement input from physic, OT etc.
They tried to discharge her early and whenI asked about checklist they said “negative” but later admitted this was incorrect.
I requested fast-track assessment. Meeting arranged. Was told she wouldn’t meet criteria (I argued rapid deterioration). Decision tool -MDTmeeting, surprise surpriseMum’s needs evaporate when “managed”.

She has rare degenerative condition akin to motor neurone disease and heart failure. Can’t mobilise without assistance, doubly incontinent (urinarycatheter sever constipation) oedema legs/feet. Suffers unpredictable blackouts. Neurologist made referral recently to palliative care team. Nonresponse yet.

She was discharged to own home with x4 carer visits a day.24 hours later she had a fall. A&E kept her overnight and she went to their “holding bay”. physio phoned this morning to say she was being discharged today. I said NO WAY (I’m currently 200miles away).

help and advice v welcome

Stick to your guns and stay away, I know it’s horrible, but the only way, apparently, that people do their jobs properly.

Did you see the forms for the CHC Assessments??
Mobility/risk of falls should clearly be the highest category now!

Mum still has needs, a well managed need is still a need!
She has a right to an entirely NEW ASSESSMENT before discharge, after this latest event.

Have they checked that the carers are still available to care for mum immediately???

Chase up the palliative care referral.

CHC / NHS Continuing Healthcare / NHS Nursing Funded Care ?

Oh yes , mentioned and link posted earlier !