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Crisis,need help, advice and support

Posted: Tue May 07, 2019 6:21 am
by Freetoleave
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.

Re: Crisis,need help, advice and support

Posted: Tue May 07, 2019 7:07 am
by Rosemary_1706
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.

Re: Crisis,need help, advice and support

Posted: Tue May 07, 2019 7:53 am
by Freetoleave
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.

Re: Crisis,need help, advice and support

Posted: Tue May 07, 2019 8:14 am
by bowlingbun
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.

Re: Crisis,need help, advice and support

Posted: Tue May 07, 2019 9:31 am
by Freetoleave
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.

Re: Crisis,need help, advice and support

Posted: Tue May 07, 2019 9:44 am
by Rosemary_1706
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?

Re: Crisis,need help, advice and support

Posted: Tue May 07, 2019 10:25 am
by Freetoleave
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.

Re: Crisis,need help, advice and support

Posted: Tue May 07, 2019 1:28 pm
by bowlingbun
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.

Re: Crisis,need help, advice and support

Posted: Tue May 07, 2019 1:32 pm
by Chris From The Gulag
NHS Nursing Funded Care ?

Main CHC / NHS Continuing Healthcare thread :

https://www.carersuk.org/forum/support- ... read-35998

FOLLOW THE COLOUR :

NHS NURSING FUNDED CARE : AN ALTERNATIVE TO BOTH CHC / NHS CONTINUING HEALTHCARE

Re: Crisis,need help, advice and support

Posted: Tue May 07, 2019 1:55 pm
by rosemary
Rosemary_1706 wrote:
Tue May 07, 2019 9:44 am
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.
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