confused and angry (me)

[fluff]

I am a bit confused by the criteria for moving someone into a CH etc. so can someone help me to unravel?

Reading posts, some seem to have been able to make that decision on the behalf of a relative (with or without their permission!) and others talk of them needing to be sectioned, to be moved against their will.

M_I_L has adamantly refused to go into a home and, although we have financial POA, we do not have care. Far from that, we have it in writing that she does not want to be moved. Recently she refused to be taken to hospital when her GP wanted her admitted. All the services involved seem to believe that it takes another agency to overturn this decision - SS wait for GP, GP waits for SS, SS say m-i-l wishes must be respected and we we have no voice but are expected to be there when she needs help.

Her condition has worsened and (only the other day I said we longed for the crisis) she has just been admitted to hospital as an emergency. At this stage I have no idea what the long term will be, or even if she will ever leave hospital, but the doctor suggested that if she recovers enough she may at some point be discharged to a nursing home. At first that was a relief, but now the worry creeps in.

If this happens and she is taken to an NH (which almost certainly won't be the place we had hoped for had she agreed to move voluntarily) can she discharge herself and go home again? Mobility issues mean that physically she could not get out of the building, let alone home, unaided and she possibly won't even remember her own name and address - but if she recovers enough to state she wishes to go home, will they be able to keep her against her will, even at this late stage?

Do we need to section her? Can we? How does that work? Can SS overturn a hospital decision to discharge her to a care home and let her go back to her own home instead? If it makes any difference, she would be self-funded for a few years at least, so I would doubt SS will ever need to fund her care, but I would guess SS might not realise she is self funded if they are judging by her appearance! I think the only reason they are happy to let her stay at home is that she is too physically frail to cause them much problem; sitting in her chair, refusing food and phoning everybody except them for help

Sorry for the rant, I know others are probably in worse situations and I am afraid I come across as uncaring but I am so confused and frustrated by this, we are all at the end of our tether - the 'help' available seems especially targeted at making an already sad situation as awful as is possible. Some idea of the possible outcomes, or what others did in a similar situation may help, so that at least we can prepare.

 

[ITBookworm]

Hi Fluff,

I can't guarantee to answer all your questions (and my knowledge applies to Scotland so might not match exactly where you are) but I will see what I can do

My understanding is that the stumbling block is the decision of whether the person with dementia is legally defined as "having capacity to make their own decisions". There is various criteria on how they determine that but to be able to overrule them (by SS, you or anyone else) then you need a decision by someone suitably qualified that they don't have that legal capacity.

In our case we have a letter from FIL's consultant saying he doesn't have that capacity. We have shown that to SS (with our POA in our case) and what we say goes even if FIL says no.

The other criteria I have seen stated is if they are "a risk to themselves or others" with their actions. With no POA in place that seems to be where SS will intervene regardless.

In your case I think (but can't be sure) that the only way that the hospital would be able to discharge MIL to a home of any sort against her will would be to make the decision that she doesn't have legal capacity to say no. If that is the case then she equally won't have the capacity to discharge herself from the home. If MIL complains enough about wanting to leave then I believe that the home then need to invoke what is called the Deprivation of Liberty Safeguards (DoLS). The factsheets (link at the top of the page) should be able to tell you more.

From what I understand about sectioning (thankfully not come across it in our case) it is used when the person with dementia is at home and refusing treatment. If MIL is already in hospital I don't think it applies. It needs 2 doctors and a specially trained social worker to do so not something you do yourself as a relative.

I hope that helps make things a little clearer at least.

 

[Chemmy]

Hello Fluff

I can understand why you're confused and angry.

I think ITBookworm's right - she won't be released from hospital until a suitable care plan is in place and this is where, if I were in your shoes, I'd do nothing to facilitate any suggestion that she is moved back home.

When my mum ended up in hospital some years back, I was abroad on holiday at the time. I knew she was safe and being looked after (she had her leg in plaster and my cousin was visiting) but I wouldn't travel the 130mls to see her until I knew what was going to happen next. It would have been so easy for me to turn up and they could have said - OK, we're discharging her now...and I would have been stuck there as the live in carer, away from my job and my family.

So I stuck to my guns, refused to visit until I'd verified procedures by phone and sure enough, that's when I got SS and the Alzheimers Society's rep's help. That wouldn't have happened if I'd just meekly toed the line.

So I'd suggest you stand back and observe from the sidelines but make it very clear that the family will provide any information required but will not take responsibility for her physical care.

 

[Chemmy]

.Sorry...duplicate post!

 

[ggma]

I think you have had some clear advice and information above. Which I am sure is helpful. The 'capacity' issue is important and possibly makes it easier to get thing done, but you can also use your own judgement and family agreement and together agree how you want to manage the situation. The bottom line is often that actually within the input from relatives, going home is not an option and getting into a temporary respite bed as a start can be helpful.
If you are funding the place from own funds/sale of home, then SS do not always get involved. We were left to just get on with it because Mum had a house to sell. Mum did not accept that she was as bad as she was and was unrealistic about her ability to manage, but we managed never to say that she would not be going home, just got her to agree to a break and stay a bit longer whilst we sorted out her house, whilst she recovered, got a bit better etc. In the end she did not even remember her home, and has settled well in the care home. No one from SS has ever been in touch about her placement as we have not had to go to them for funding, and they did know about her when she was discharged from hospital.

As advised above, take one step at a time, and do what you think is right and the best for you MIL.

 

[Sox]

Hi - I totally agree with Chemmy about "standing back". When my Father was in hospital 4 years ago, we were VERY lucky to have an excellent Social Worker who advised me not to have him home until a care package was in place, because if I did I would be left to get on with it on my own!! It was a very hard decision and I came away from the hospital in tears on many occasions because every time he asked me to take him home and couldn't understand why I wouldn't but it worked in the end and we had really good carers in three times a day and were able to keep him at home for another 12 months. Slightly different for you I know as it sounds as if MiL will need a care home, but just wanted to say "stay firm" that you will not take responsibility for her. Good luck. Sox

 

[Grammy]

Hi
I have very much the same advice to offer you. Social Services usually do intervene when the patient wants to go home when everyone else knows that is not in best interest.
Under the Mental Capacity Act they will come and assess whether the patient has the capacity to make the best decision for themselves or will they be in danger to themselves or others.

I do have Lasting Power of Attorney for Health and Welfare of my Mother as well as finances but I have been told that this MCA over rules all Power of Attorney. So I am doing what has been advised to you and taking a step back and let them come and assess. I know in the end that even if they put in a care package four times a day my mother cannot be alone during the night - so the answer will have to be residential care. As we are self funding I would have thought that it would a simple procedure - but no - they are still going to listen to a 98 year old lady with stage 2 Alzheimers. There is no question of sectioning her - just 24 hour care.

hope you get it all sorted out

 

[fluff]

Thank you all for your replies - it does help. It helped just writing that post to let go some of the stress.

I think I was getting confused between sectioning and capacity, but the difference is a bit clearer now (thank you bookworm) - so it seems that we need to ensure someone has considered this and the need for DoLS *before* anyone starts trying to send her home. I'm not sure how we organise that, but I'm sure I can find out and make sure it happens before anyone can be available to take her out of the hospital

Last time she was in hospital the consultant didn't want her to go home but the SW said extra care could be put in place to manage. That was several months ago, so I guess they'd argue it was "right" - whether it really was what was best for her or for us is a different question. She certainly hasn't been happy. I don't want her or us to have to go around that loop again.

Thank you to everyone for saying 'stand back' - there is so much pressure to be available and to 'do as you are told'. It's good to hear that not everybody thinks you should

 

[NeverGiveUp]

SW may appoint an advocate to represent her 'best interests', our experience on the 2 occasions that this has happened with mum is that they (SW, hospital etc) tried to cut us out of the loop, they started to take a keen interest in house and finances. I would suggest that you have a very clear picture of the situation, if it just lands on you it is a bit of a shock.

Suggest that you prepare yourself to 'lock down' the finances so you can be clear that 'best interests' are for your loved one not the SS or whoever.

Hopefully it won't happen but if there is a hint of relatives standing back and the patient is a homeowner and/or has savings it can get a bit 'unusual'.

 

[fluff]

SW may appoint an advocate to represent her 'best interests', our experience on the 2 occasions that this has happened with mum is that they (SW, hospital etc) tried to cut us out of the loop, they started to take a keen interest in house and finances. I would suggest that you have a very clear picture of the situation, if it just lands on you it is a bit of a shock. .

Thank you for that advice - this is turning into a real minefield, but best to be forewarned.