Dad has dementia in a nursing home. The staff are reviewing the "deprivation of liberty" order & want to send him home. How do we fight it?

It's not quite that simple, CTTN.

The father is the doctor's patient. Mum isn't.

Worse, and this is not purest cynicism, the father is costing money. Mum-care doesn't (or not until she falls to pieces, anyway. Then she'll cost a LOT more, but they're not looking that far ahead).

Father is currently the subject of a DOL order, though it sounds like he won't be for long. These are court orders which sanction the restraint or confinement of people who pose an immediate threat to themselves or others. They are subject to routine review and removed whenever possible.

[I got my knuckles rapped for being flippant about wanting to "deprive" my mother of the "liberty" to chuck herself on the floor and break a hip - everyone gets terribly pious about the process. In the event she broke her wrist, instead. But at least she was free to do so!].

So we begin the funding nightmare. Who is paying for this NH? - and what sort of NH is it?

While Dad was actually psychotic, the NHS would pick up the bill. Clinical need = free care.

But - bear with me - most dementia is not considered an illness - I KNOW, bear with me - and if the patient's care needs arise solely from dementia this is not a continuing care need and the NHS does not pay. The funding burden passes to a) the patient or b) the local authority.

While Dad is still in the NH as an NHS patient, his care will be paid for by the NHS until he is discharged.

If the doctor is a GP, his practice will be under pressure by his local Clinical Commissioning Group to justify the cost of keeping Dad in the NH under NHS auspices.

If the doctor is a geriatrician or older age psychiatrist or common-or-garden psychiatrist, he will want more beds at his disposal and he will want to free this one up as soon as possible. Dad, now not psychotic, is a "bed-blocker." He doesn't "need" to be in this particular, possibly very costly, NH.

The family:
a) should have the guidance of a qualified social worker in planning Dad's discharge
b) should be pushing for his transfer to a dementia care home, if mother agrees and has POA (EPA in the UK)
c) is entitled to certain services, types of support and benefits depending on their circumstances

If mother does not have EPA for Health & Welfare then she cannot technically prevent the father's being returned to his own home with an agreed care package.

But the NH cannot discharge him in those circumstances without the care package in place, and good luck getting that together for Dad! The law may say "Mr X must receive four visits of not less than thirty minutes per day" but the law does not seem to be able to magic skilled caregivers out of thin air, for some reason, and especially not at the rates local authorities are able to pay. So another social worker will put this new service requirement out to tender, and wait for providers to bid for the work, and then they can tick the right boxes and send him home.

It all takes weeks and then it doesn't happen anyway and life moves on and you end up doing it yourself. If you are comparatively young, fit and well. Which mother isn't.

There will be answers and all will be well and there are things that can be done; but meanwhile the system is a rats' maze apparently designed to drive us all to drink.

So sorry your family is having to deal with this.

I would be talking to the doctor and any social worker who is available and state very clearly, the Dad cannot come home as Mum can no longer look after him, full stop. Tell them very clearly that if the nursing home wishes to release him, it will not be back to the family home and they will have to find other accommodations for him.

Be very clear that it is not safe for Mum nor Dad if he is sent home.

One person cannot care for a dementia patient.

So the question for the doctor is "Who is coming to care for dad.? Who is going to be arranging that and who will be paying for it?".

Your mother is not equipped, by the mere fact of her age, to be the sole caregiver for ANY dementia patient.

Venus, where are they? - what local authority/health authority, that is, do you know?

Do you also know:

whether your parents have a key worker assigned to them
has your mother had a carer's assessment done
what species of doctor is recommending your father's return home?

I am struck by this: "The doctor has indicated that my father should have the DoL lifted and go home. He told my mum that it was a shame that dad was in a nursing home, to which she agreed, and pointed out that the house mum lives in is his house to, which mum also agreed with."

How dare that doctor say this! Was he informed of how your father was and how your mother can't take care of him? I just hate it when medical professionals try to dictate what the patient's family will do.

You want nottinghamshire.gov.uk and go to Adult Social Care, then to Support For Carers.

There you will find advice and information such as:

*********************
Nottinghamshire Carers Hub - this provides a range of support and services for carers. If you contact the helpdesk on 0115 824 8824 you can speak to an experienced support worker who will provide a personalised service that meets your individual need. You can also email hub@carerstrustem.org.

Nottinghamshire Help Yourself - you can find out about support available in your community by using Nottinghamshire Help Yourself, which gives information about local organisations that provide a range of services.

Dementia Carer Net - if you are looking for advice, support or information about caring for someone with dementia.

*************************
To fathom the whole of the DoL shenanigans you would have to read the Mental Capacity Act, though I warn you you might lose the will to live. Plus by the time you've finished it will probably have been amended again.

Also, you didn't hear this from me, but the reality is that assessments are performed by people under pressure, commissioning services that often do not exist in our standard four dimensions, to standards that tend to be set by other people who never meet a vulnerable adult unless they trip over one on a photo-opportunity.

So what happens is that people arrive in the room with a basic, broad idea of what is a) going to serve the caree well; b) be achievable; and c) be retrospectively justifiable within the requirements of the MCA and POVA and all the rest of it; and all the individuals try to achieve a consensus, preferably the one that won't land him or her personally with uncomfortable responsibilities.

M'm. Actually, swap a) and b) round.

Nevertheless. If your mother is afraid at any time that either she or your Dad is at risk of harm, then she must be a squeaky wheel and keep on squeaking.

Does she have a good sympathetic GP? (they should have her registered as a Carer. This will get her free 'flu jabs and various other medical cuddles)
Has your father been through the Memory Clinic process, and thus have an older age psychiatrist and a community mental health nurse on his case?


Oh fantastic! The good news is that your parents are in a catchment area for a lively branch of MHA. Go to mha.org.uk. This organisation, in my experience as a service user and also their one-time copywriter (they didn't know, I was a freelancer, kept chained to my desk in the coal cellar), is among the very best providers of dementia care and support. If your mother needs respite care or help at home, they are the people to call.

What is going on about money?
How long has it been since your father's diagnosis?

Bumping up again.  Totally agree with Tothill's answer.

If needs be, have mom move in with someone else temporarily.  Inform SW that dad will be released to an empty house.  Your dad needs professional care. 

Thanks again all. My sister and I spent some time listing all of the incidents Dad has had & thinking how best to describe them in terms of safety issues.

We think Mum may agree to take dad home, regardless of what we think, so first up is to respectfully discuss with Mum, find out what she's thinking and what she wants to do. It's clear to my sister and I that Mum would be putting her self at risk buut shge knows dad wants to come home and she wants to make him happy. I think it will be Mum who needs to say 'No" in order to (hopefully) prevent his release.

Bumping up until CountryMouse wakes up.

Hi Countrymouse,

They live in Sutton-in-Ashfield, Nottinghamshire.

A keyworker is assigned. I don't know if a carer's assessment has been done - What would that involve?

I'm pretty sure the doctor is from the planet TooCruel4Words.