Advice on mental incapacity in elderly please?

[Mouselady]

This may be more appropriate to the Carers threads, but would like max exposure.
Dad is very old and frail, various problems and is currently hospitalised following a head injury which has picked up MRSA(!) so he's in a bad way.
Psychiatrist last week diagnised him with dementia (not too unexpectedly), and incapable of taking his own medical decisions. I had thought that in these circumstances responsibility would fall on his next of kin but it hasn't - the medical team are now taking these decisions, up to now without prior consultation with us. OK, in the main I agree with their decisions, there's no friction there.
However, in the long term they have said 'we will be looking for a placement in a nursing home or EMI'.
Well, I am unhappy about not having a formal responsibility for where my Dad ends up even if it is shared with them. At the moment my worry only extends to medical and housing decisions, anything else can wait.
At the moment we are on good terms with his medical team, but I don't want them having total control over Dad's future and can foresee trouble ahead - they could decide on a 'placement' that we don't like, with staff we don't like, in an area we might find difficult to visit him frequently etc etc.
Any advice gratefully received.
Sorry this is a long one.

I'm no expert but suggest you set up powers of attorney ASAP (go to Citizens ADvice about this) - it costs money and can be long winded but think this should allow you to make some decisions on behalf of your father.

I think you should have the right as next of kin to be involved - you might also need a social worker's assessment of his needs if/when they discharge him into other care. Get involved speaking to the hospital social worker NOW about this since ideally you can claim you'll be affected by any decisions about his care - if for example you ended up paying for part of it, or having to sell a house on his behalf.

Age Concern website has some excellent advice about care/financial/attorney issues if you need more specialist help as do Citizens Advice. I'd suggest you shout loudly about being involved in hospital as they may well do things you haven't realised and then can't back track on.

Ask about a treatment/discharge plan and insist on being involved in any further medical or housing decisions.

direct gov info has some stuff
code of practice

seems like it is covered by a new act and you should be involved in the decisions

this is covered by the new Mental Capacity Act. All health profs should have had training in this, but often they haven't .

Basically, you should be involved every step of the way. the medics do not get to decide where he ends up - this is a major decision to be taken with your full involvement.

In fact, as a community SW who for various odd reasons sometimes has to take on hospital cases, I would be thrilled if you wanted to be really involved with choosing a placement. I'm about to start tea, bed and bath, but please post/CAT me and I'll talk sense later.

Thanks everyone. Just got back from hospital - he has picked up a bit since I saw him earlier.
I am quite cross with myself - I do wish I had talked him into an EPA when we first started noticing the little things because I have a clear view of what his idea of quality of life is.
The biggest bone of contention we had with the Drs was that they decided last Wednesday that he didn't have the capacity to make medical decisions and they decided not to go ahead with a liver biopsy (before we even knew either of these decisions had been made). The house officer told me very emphatically on Monday that the medical decisions would be made by the medical team. I spent over an hour yesterday with the registrar and feel better about the biopsy decision (especially in the light of the MRSA)as well as the fact that he said he would involve us as far as possible, so my main worry is the future.
3 of his next of kin (including me) live in an adjoining London borough and if he is to go into any residential care, I would rather he was nearby to us. I feel we may have a struggle on our hands to get him moved across boroughs. I also do not think he will need EMI. He recognises us and asks questions about the kids etc, he is too frail to be aggressive, but he does have some funny ideas! I accept he can't live at home anymore and he couldn't live with me (I'm already caring for my disabled son) but a really nice, easily accessible nursing home might work. There are funds enough to get us through about 9mths-a year before we will need to sell the house or anything.
We have already met with the hospital social worker once and she will be involved again once the MRSA/head injury issues are dealt with.
I am off to research the new Mental Capacity Act. Perhaps if I quote a few clauses, I can scare them all off!
Thanks again.

make sure you are involved in the discharge planning meeting

whats an EPA and an EMI?

I'm interested as my mum is 80 and I look after her............

Good luck with your dad mouselady, its a hard process isn't it

Bear in mind I'm no legal expert Chelsy but I believe an Enduring Power of Attorney (EPA) made out while my dad was still capable would have enabled our solicitor to 'activate' it, and assume the decision-making on his behalf. Of course, can't take one out now as he's no longer capable. No doubt it would have been difficult to discuss all the issues with him but I do wish I had taken the plunge. My neighbour who is a retired legal secretary and is now 83 did her own EPA so everyone knows what she would want should she be unable to tell them.
EMI is a specialist sort of residential home for the elderly with dementia. I understand there are two levels - one is much like a nursing home with perhaps extra security etc, and the other has much more stringent controls. I am sure the staff in these units are very experienced and that the quality of life of the residents is foremost in their policies, but I reckon any of us would prefer our oldies not to have to go that route.
Am off to sort out dd, who is running a magnificent temperature tonight.
All I need now is for the dog to get sick....[desperate attempt to maintain a slight sense of humour in the midst of all this]

hey mouselady....

you might need to get a bit assertive on this one. Basically, even if your Dad doesn't have capacity to make medical decisions, that doesn't mean that the medical team can ignore his wishes. His wishes are to be taken into account at all times, as are yours. I would aim to attend the ward MDT (multidisciplinary team meeting). You can ask a nurse to book you in. Find out what the social worker reckons is most appropriate - be it care at home, residential care, or nursing care. If your father owns his home, and no-one else lives there, he will be self funding. As such, you can find an appropriate home yourself and request placement to be made there. If the hospital SW is half-decent, they may well advocate for you with the medical team.

There are nice homes out there, but people with dementia can also be supported at home to a degree. again, SW should be able to advise.

are you in London by any chance?

oh, it also might be worth consulting the hospitals Patient advocacy and liaison service (PALS) - I think all hospitals have them.

the key bit of the Mental Capacity act in this case is s.4 on determining bests interests. this has to be done with a view to wishes of carers, and previously known wishes of the patient, amongst other things.

HTH

the house officer is a junior doctor. So they have no business laying down the law to you about your Dad's future!

have just re-read your post and you quite clearly mention that you live in London . I work there, not hospital based, but have a good degree of working contact with UCH, St. Thomas's, RLH/Mile End. Let me know if I can put you in touch with the hospital SWs.

I'm in Scotland, and the Adults with Incapacity Act up here has been going for a few years. Don't know how similar the english one is, but probably pretty close.

The basic premise is that, unless determined by the patient themselves prior to the incapacity occurring, no member of the family, whether next of kin or not, has absolute power over what happens to the patient. There have been cases in the past where families have clashed within themselves over how someone should be treated .The doctors are charged to act in the best interests of the patient, and MUST take the opinions of the family (not just the next of kin) into account; but that does NOT mean that the doctors HAVE to do what the next of kin says. If the family disagree with actions taken or planned by a doctor, then a court order needs to be obtained- which obviously involves both parties explaining themselves to a judge.

If we have, for example, a person with a broken leg, who has dementia, or other mental incapacity, first the doctor has to ascertain whether the incapacity will improve, and whether the treatment can wait until the improvement. If not, the doctor can go ahead with the planned treatment if it is in the best interests of the patient.In an emergency situation, the doctor will always act to save the patient's life, unless the death was expected.

Obviously, not all situations are as clearcut as this, but the basic tenet remains that the doctors should act in the best interests of the patient.

BTW, you WILL be involved in the decision about where your dad ends up, that is NOT medical treatment, and not covered by the act. The doctors may decide what type of care is appropriate, but then the family and SW get together, look at what's available, how it's going to be paid for, and come to a decision. Taking him home may be an option, but obviously, only if family are willing to be carers and can cope.

Honestly, the doctors will NOT be deciding where your dad goes. You can relax on that point.

I think the others have said it all, some really good advice here. Perhaps a look here will help on the MCA?

Thanks again everyone. Feeling a bit better about things this morning since Dad was communicating quite well last night so may be able to put his own views forward a bit.
Also remembered I know a partner in a London law firm who specialises in Court of Protection issues, so am sure she could help out if necessary.
Will let things lie until we see the outcome of the MRSA (early next week hopefully), then put my power knickers on!

glad you're feeling a bit better .

one other thing - if you do think your Dad might want and need residential care, it's worth putting the feelers out asap. hospitals often want to rush you on this one (), and it normally takes a couple of weeks to get something set up. If you don't already have some ideas, the csci site allows to you search homes by postcode and view their inspection (akin to OFSTED inspections) reports.

good luck again with this ML, I know you have a lot on your plate. Do you get much support in helping your dad?

If he wants to go home again it is possible to do this with the state paying for a team of carers. DHs gran has just died at 98, and she was in her own home, with a team of carers going in 4 or 5 times a day, paid for by social services (I suppose this depends on your Dad's level of income), MIL arranged for a company to deliver meals for the freezer, and this situation had been going on for the last 4-5 years I think. MIL and her sister used to go up in turns, so effectively, someone from the family went every 5 days, and the care team were in constant contact with MIL. DHs Grandma had full blown Alzheimers to boot, so it can be done.

Don't let the hospital bully you...they did this with my Gran, and when my brother and I said we weren't happy with where they were going to put her, as the CSCI report was crap, we were told if we didn't accept the place they would put her somewhere really inconvenient. Given that he was in Scotland, and I was in Brussels, it didn't worry us, but I didn't like being threatened with my Gran's welfare.

Good luck with it all....I got my Mum to fill out an EPA before the rules changed this year, and because of DHs Gran, DH and his brother have one for MIL and FIL as well.

Scary, it does depend though on the assessment of care needs - 4-5 times a day is not enough for personal care issues (going to the toilet in particular if they can't manage it by themselves), as we have found with my MIL, so in these circs, unless family members can step in, nursing homes might have to be an option...

scary, can you tell me about the rules changing on an EPA?
and where could I get some advice on this for the future (my mum is 80)?

thanks

chelsy - you can no longer make an EPA application. This had been replaced with LPA - lasting power of attorney. IIRC, it is now more expensive to apply to the court of protection for this.

it is well worth doing if you and you mum are both happy with this. you can get application forms and guidance leaflets here.

It wasn't ideal, but DHs Gran had the screaming abdabs whenever they took her to look at a residential home, and DHs aunt wasn't having it either, hence the team of carers. Grandma was doubly incontinent, so the appropriate pads etc were used, and she was in bed by 2000 each night, and up at 0800. She was on her own at night. She had a piper alarm which she refused to use, even before the Alzheimers took hold. The whole thing was a calculated risk which sounds awful, but she lived in Oxford, and the family is spread across the UK, so it was impossible to have family members going in each day. My in-laws are 73 and 75, and they were shouldering a large part of the burden. MIL was all too aware of the risks as she is heavily involved in large charity in the South of England which deals with this on a daily basis, and she thought this was the best option she could come up with given the intransigence of some family members about residential care, and who was going to foot the bill until the house was sold to pay for care.

Try these links
www.direct.gov.uk/en/Over50s/HomeAndCommunity/Carers/DG_10026855
www.alzheimers.org.uk/factsheet/472
www.publicguardian.gov.uk/arrangements/epa.htm

thanks for the info!

is it something I should consider then? mum is 80 and in "quite" good health, but who knows what tomorrow might bring. what does the LPA involve? she doesn't own her own home, is in a council house, so fighting over money shouldn't be a problem as she hasn't got much.

any more advice welcome!

if your mum doesn't have lots of cash, an LPA still might be worth getting. there are 2 types. one gives you the right to run her financial affairs, and the second allows you to make health and welfare based decisions for her (avoiding the too-common problems faced by the OP). have a look through the paperwork together, and see what you think! A friend of mine has just done this with her mum. Her mum is only 60-odd, but there is a history of dementia in the family, and they saw this as a way of retaining control should the worst happen.

thanks I'll try to find out more about this!