We can't cope with Dad at home. His symptoms of paranoia are currently under control but his other symptoms are not.
Mum is living at home and my sister lives nearby but works full-time and has kids to take care of. The youngest developed major mental health issues after Dad was admitted so my sister is worried about a repeat and will have to restrict her involvement with Dad. I live in a different country.
Realistically, Mum can't cope with Dad at home but she knows he wants to come home and because she has a people pleaser personality she is struggling to say 'no' but knows it will be impossible.
My sister tries to attend all team meetings but can't always get time off work. We are going to try to arrange for me to join meetings by conference call.
What criteria is used to determine if a "deprivation of liberty" order should stay in place? Any tips on fighting to keep dad in the nursing home?
Priority is safety for BOTH parents. I believe you should stand your ground as an advocate for your mum. despite her feelings to bring dad back, help her to understand the toll it would take on her health. My heart goes out to you all.
"Some people are running on the pitch..! They think it's all over! - It is now!!!"
I only ever watch rugby and even I can quote that piece of commentary.
If you're happy with this NH, and it does sound a good 'un, how's the assessment going? Is your mother getting more used to his being there? How is she feeling about plans?
Don't worry, I have not been depressed by all the information and the complexity. It has actually fired me up because it has given me a sense of direction & a map to start navigating the issues.
My sister is helping find an advocate through either the Carers Hub of Age Concern (whatever their new name is).
Dad can be a bit difficult sometimes but having visited him in the NH a few times (bring in a different country makes it hard to visit often) I can tell that he is one of the easier patients.
Dad's most common delusion is that he is at work and in trouble for not meeting a production goal. He makes himself busy E.g. he finds all the towels and stacks them neatly in his wardrobe. Unfortunately they don't belong there. The staff have been great at working with him and giving him very simple tasks to do that help calm the anxiety. He thinks it is part of his job (which could reinforce the delusion but as shown by the towels he finds himself work to do anyway). Simple things like collecting dirty coffee cups and carrying them into the kitchen area for staff to wash.
The staff love him. He loves to talk about soccer games from the 1960s such as when England won the world cup & of course to him it feels recent. Some of tthe younger male staff love to hear him talk about this as they aren't old enough to have lived through the only time England ever won anything at soccer.
Thanks for all your help.
And the thing about the maze is you'll be basically all right even if you're stuck in a blind alley because you will be looked after, somehow, one way or another... :/ It's just trying to get to where you ideally want to be that makes you go boss-eyed.
The OP's mother has a key worker, who will be either a social worker or possibly a community mental health nurse - they hang out in multi-disciplinary teams, and sometimes have to put on each other's hats, too (for example, the social worker handling "our" discharge was on secondment from the Brain Injuries Team, which made her a bit hit-and-miss when it came to Frail Elders but bless her she did her best).
If Dad stays in care, then the home manager would be my first port of call and should be handling liaison with everyone else.
If he is returned home, then a good GP is worth her/his weight in gold and can get all kinds of balls rolling.
Awful lot of cooks in this kitchen. It's a matter of finding one you rate highly and holding tight to that one.
Tell them that as much as you all love dad that if they take him back to the house the door will be locked in their faces & he won't be allowed in - I needed to draw a line in the sand with my parents about a similar issue so I made it clear & heavy not a thin almost unseen one so that ended that issue there & then
It will depend on the care needs assessment, which will consider what support your father needs to allow him to live safely at home; how many visits a day that requires; how long the visits should last; and whether he requires one- or two-person assistance.
How this is going to work if dementia is the sole issue I'm not at all sure. I should urge your mother to speak to Nottinghamshire Carers Hub - they'll be able to put her in touch with independent advisers and advocates. She needs allies.
The care needs assessment should tie in with an assessment for a benefit called Attendance Allowance, which will be payable at a standard or higher rate. The idea behind Attendance Allowance is that it enables service users to commission their own care, if they've a mind to; or they can use the local authority's providers. Local authority care is not free, you have to pay for it if your income/savings/assets are over the given threshold.
Local authorities have financial advisers who will come and talk through care funding with the service user and his/her family - we found that although this didn't make any actual cash difference, it was quite helpful in clarifying the various processes. But everybody gets Attendance Allowance (don't get excited, it's peanuts) to help offset their care costs.
I'm not sure that your mother will be able to claim Carer's Allowance if she's over seventy... it's supposed to compensate family carers for their loss of earnings (rofl) and as she's already of pension age I don't think it will apply.
But what she *should* be able to claim is respite care for up to - I think - a maximum of six hours per week. She must apply for a Carer's Assessment asap if she hasn't already.
If you go to www.gov.uk and type in Office of the Public Guardian there is loads of information under "making decisions on behalf of someone else" that will explain what to do next.
There you will find advice and information such as:
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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.
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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?
Mum does not have any kind of power of attorney. By the time my parents realised one would be needed dad was too far along to establish the competency to consent to one.
I believe the local authority are paying for the NH, which private.
Does the law say 4 visits a day, no shorter than 30 mins, or is that an example?
Thanks for all your help, this is incredibly useful information. Thank you.
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.
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.
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.
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?
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.
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.
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.
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.
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.
Both things are true, but not the same as it being the best thing for my dad to leave the NH, and not the same as my mum being able to cope with Dad being home. But the questions were used to lead up to talking about dad going home. Mum asked about a transfer to a care home instead of releasing him to go home and apparently the doctor got upset at this suggestion. (I Don't know precisely why or in what way - I only learned today about the conversations discussing releasing my dad).
When my father was admitted he was in full psychosis - violent, destructive and paranoid. Both he and mum are in their early 70s. The psychosis has subsided but he is still confused and unable to do most basic tasks. A few weeks ago he found a razor and decided to shave himself. He took climbs out of his hair and didn't touch his face. He thought he had done a good job. He regularly urinated in the corner of his room or the trash can instead of using the ensuite bathroom. He paces half the night, shakes and is physically unstable - all symptoms I am sure everyone here is familiar with.
I am concerned that the change of routine will trigger a reversion of behaviour. He doesn't do well with change and this would be a drastic change. It's a very nice nursing home but he doesn't understand why he is there and just wants to go home with mum. That's a big emotional tug on mum's heart.
We are concerned that the emotional tug of giving dad what he wants will let mum be persuaded by the professionals that he should come home. My sister and I both think that's a bad and dangerous idea.
I don't know how much my mother's opinion counts with the professionals. I don't know what factors they will take into account. I believe their primary mission is to decide what would be in dad's best interests but I don't know what they take into account when determining what they are and how they are best met.