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Elderly parents

Sectioning (help/experience)

93 replies

FlatOutAgain · 08/01/2023 10:28

Asking on here in case someone has experience or any answers. Those who have followed my threads know the issues with mum.

I am typing whilst waiting for a call back but as I have no knowledge of this someone else might.

Mum smashed up her room last night (again), has bitten and punched staff and has poured water into electrical appliances. She is a danger to herself and other residents as she has been going into other rooms and hiding etc. She has caused so many issues in only 9 days.

The care home have said they cannot cope with her and we have to pick her up. I can't just pick her up and put her with my 85 year old dad. I called 111 and they called the care home to assess. We are now waiting for a nurse/paramedic to call the care home to assess. All of the mental health services are not available on a sunday.

Anything anyone else can think of? I will pop back now and then to see if there is any advice. Sorry to ask on here but I am just trying every option I have

thank you

OP posts:
Mum5net · 06/02/2023 20:27

@Tara336 The deterioration is hard to watch. I think you actually start grieving your parent at this stage. You make a good point that the decline may be inevitable regardless of location Also when you are sitting with him when you visit - rather than cleaning and making his meals at the same time - you actually have time to notice more. Sorry, for not remembering, but do you have expectation that he will be coming home? It's a very difficult situation.

DahliaMacNamara · 06/02/2023 21:05

Please look after yourselves. DH and SIL between them have been doing the whole travelling/detouring to pick up elderly FIL thing to go to a MHU in the wrong direction for months. It's really starting to take its toll on the pair of them on top of demanding full time jobs. It takes hours out of every day, and you never know when you set off if it'll turn out to be worth it.

FlatOutAgain · 06/02/2023 21:37

thank you all. No-one else who lives near to help out unfortunately. I think the point about facetime or similar is good and we will ask the home about that. It is a care home but it is a very secure one. Two visitors at a time and only for 1 hour per day. You get escorted everywhere and can only meet in certain locations. I appreciate it is very rules driven but unfortunately that is what is needed. Despite surveilence in hospital she still got out and was found on a stairwell.

We really have no choice at this point so will agree to the proposal. It is so frustrating that there are not more complex needs homes, they really do seem few and far between.

Df does get higher rate AA but he has physical issues and the journey will take its toll on him. After a discussion tonight (not with him as his cognition is poor and he doesnt really understand what is happening) we think that 2 visits per week will have to do.

thank you again

OP posts:
Tara336 · 07/02/2023 18:36

@Mum5net No DF definitely isn't coming home. He has DOLs order on him (deprivation of liberty) but regardless we just couldn't manage him again. The Dr thinks he would revert back to being aggressive. DM visited this week and was asked to sign paperwork stating we have POA and while in the office DF who was very "with it" was tapping on the window with his stick demanding he be let in. He was apparently also asking if I had got any further with him having his driving licence back! It's one of the things that surprises me so much its like he fades in and out, he couldn't remember DM name last week and just sat crying, yet this week he's remembered a conversation from over a month ago that he had with myself and the psychiatrist about driving (to pacify him the psychiatrist had said he would arrange a meeting about driving once he'd been treated in hospital). I'm not visiting this week as I, like others am finding the long journeys exhausting and am never sure which version of DF will greet me. I suspect he will be moved nearer home sooner rather than later as they will want the bed in the MHU

Mum5net · 07/02/2023 19:43

@Tara336 Really not easy. I remember always thinking that DM would be moved out and my DSis and I wouldn’t be ready for the next stage…. each and every advancement is a leap into the unknown… and we never really felt confident we were navigating it properly.
My DM was seriously under weight so we brought food to encourage her to eat. This filled the time well, meaning we didn’t have the conversations and questions you might be experiencing.

We also learned to leave by stealth which was v sad but prevented DM getting upset at proper goodbyes.
As @FlatOutAgain says, options are limited about which care home can accept them. The nursing staff will give you the heads up where there patients in their age group normally go next. We had never heard of the places. But almost like a phoenix a plan eventually arises.
If I’m entirely honest the version of my DM that we saw was a much diminished and drugged up version. It’s incredibly stressful getting to know this new parent that you are rocking up to visit. Not every visit was a success.

Tara336 · 07/02/2023 20:42

@Mum5net DF has a taste for Malteasers at the moment and polished off a box on one of our visits while also telling us he was on hunger strike. We've been pla nine how to furnish his room to wherever he goes with photos which he seems to enjoy looking at, one family member suggested we label them with our names which is a good idea. We still have heard from the SW re the move but DM has signed paperwork agreeing to it and we are all hopeful he will be closer to home. I am watching DF disappear slowly and I don't recognise the emotions in him. Df was always very calm, very stiff upper lip and this man is angry, tearful and quite scary. I honestly don't know how anyone is expected to cope with this. It helps though to share information and support each other here and I just want to say thank you to you all and I hope any information I've gained on the way is useful to you too x

FlatOutAgain · 07/02/2023 21:31

@Tara336 Has anyone spoken to you about your dad needing 'complex needs help'?

I only ask because this is where we are with mum and when she goes into the new home it will be funded by Continuing Health Care. I say this but in reality it will be funded for 4 to 6 weeks when she will be assessed again (look up Decision Support Tool) to see if she will be continually funded. There are a lot of complexities to this. Anyhow if she gains funding then she does not have to pay anything from her own money. In truth she is close to the 23,250 anyway.

Another point is that the hospital mum is in has two discharge teams. One you could call standard and another called Complex Discharge. See if yours does the same. They also have a Dementia and Delirium team who have been heavily involved.

If you have any questions please ask as we have had to learn quickly and even now there are surprises when a new team or deparment raises its head that you did not even know about.

As @Mum5net says a plan does start to form. Just try to make sure that you are helping to drive the bus rather than just being a passenger.

OP posts:
POTC · 07/02/2023 22:02

@FlatOutAgain keep chasing the care needs assessment for your father, they don't have to take that long and can be done within a few days. I worked as a community carer and our company would chase the social work team to get it done sooner when we had a client paying privately who we felt needed more care so perhaps ask his new care company if they can do this?

Tara336 · 07/02/2023 22:13

@FlatOutAgain no nothing has been mentioned They did a vague CHC thing in the meeting last week and the Dr seemed ti be determined that DF wouldn't meet the criteria along with a SW who has never met DF via teams . Df got mainly B's I'm assuming he needed A's to get CHC they also said it was on his observed behaviour not what we had experienced at home. I'm tempted to appeal. If they thought he was safe to be released why place him under DOLs? When we are watching our loved ones fade away we shouldn't have to be fighting a system

Tara336 · 08/02/2023 08:36

Sorry I missed the post about Facetime etc. We can't really give DF a phone as he now struggles with technology (couldn't even manage the TV remote before he went into the MHU) and when in hospital before Christmas he was getting the nurses to call DM and was being abusive so in MHU we have told them no calls to DM (I've said im OK to be called but have only received one) giving DF a phone would be disastererous.

I work in DH business so I'm having time to sort things but I also have MS and need rest and preferably no stress, both of which feel impossible right now. I've already had calls from family this morning panicking about some money gifted to younger family members last year and deprivation of assets (which it isn't).

I am really feeling the strain right now, it all seems to fall on me to be the strong, organised one while I'm watching my DF dying, I'm having to sort the house for DM as that is in chaos, sort finances, visit DF, work.... i am burnt out

FlatOutAgain · 08/02/2023 11:18

@Tara336 We care for our daughter who has MS so we can understand how things are for you and we know that the stress of your situation will have an adverse effect on your health. Sorry you are going through this.

Very long to see if this helps you

In summary your situation is not unlike ours. Of course every situation is unique and different authorites have different systems. However, I believe from my own experience that they are some basic things that should be followed.

From what I understand your dad is now in hospital with low sodium and potassium levels. This happened to mum and she was in hospital for 3 weeks last June. It was the Sertraline they put her on and not the dementia. Her sodium levels have dropped again now that she is in hospital but that is not uncommon for elederly people in hospital.

We have the hospital records on an app which allows us to see each time something happens to mum such as a lab test etc. We then follow this up with the nurses as they are usually unaware and we have the information much quicker. We also have the NHS app for her GP so can see things from that side as well. Access was granted by the GP on presentation of an LPA.

The major difference between our situations is the mum was in a 'standard' dementia care home for 9 days and she smashed up her room and assaulted staff to the point they could no manage her. In hospital she was on a specialist dementia ward for 1 night and they also could not cope as she assaulted staff and tried to smash windows with an oxygen bottle.

We therefore have a history that shows she cannot go to a standard care home and certainly cannot go back home.

Your dad doesnt have this but he does have the section and from that alone I would expect that they would not allow him home. If they did then they would need a 24hr care package which may not be suitable given his aggression and that means you mum would have a live in carer which in turn is a huge disruption to her life.

With your dad in hospital they have to discharge him at some point. As the LPA holder you can righty say that a care package must be in place before he leaves. They cannot argue against this and you also have to agree if the care package is suitable or not. So you have some aces in your hand even though it may not seem like it.

So assuming he is not going home then it will be to a care/nursing home. He cannot take risperidone so I assume he cannot take other anti-psych drugs? Is he on ADs?

In our case the OPMH liaison psychiatry (hospital OPMH) assessed mum daily. We called the team every 3 days for updates. This is important and also to keep a log of exactly what has been happening and who said what to whom. We have kept a detailed diary since last June and there have been 2 instances where it has been invaluable. Especially where they tried to put mum back onto sertraline. No one had updated the hospital pharmacy system to say she could not take it. Cue the psych team running to the ward to stop it happening (yes really).

So if you can call the OPMH I would recommend it and you will get a fuller picture of what is happening and what medication they may have been trying. They did this without our knowledge as it did not show up on the systems we had access to. Regular calls caught it though and also when medication changed such as her risperidone going from 2 x 0.5mg to 2 x 0.25mg

With the OPMH involved they worked with the Dementia and Delirium team to produce a care report. This report was passed onto the ICB. Parallel with this we spoke regularly with the LA Adult Social Services and had a social worker involved. They called the social worker and Independent Living Advisor. I see your dad has a social worker and I would recommend updating them regularly to ensure they are in the loop as they can have an input on care. It is also important if you need to seek LA funding.

With the ICB involved they kept in touch with us. In reality we kept in touch with them and pushed for regular updates. They then worked with the LA placement team who looked for a home for mum. This was very limited given her complex needs. On the face of it this looks like the situation your dad is in and he will need more care than a standard care home. If they do put him into a standard care home then you might be back to where you started from if he becomes to much of an issue for them. Trying to avoid this is really important for two reasons: 1. You will have to be more involved 2. The standard of care for you dad will be lower.

This means CHC funding is super important. You say he scored Bs rather than As. I really dont know what this means and therefore it may be a local system they have. The OPMH team should assess with the Dementia and delerium team and it should not be a tick box exercise. This is not just me saying it, it is the law. Any tick box is not allowed to provide an answer and is ONLY to be use as guidance with all stakeholders being involved. So going back over what I have written it now may make more sense. A detailed log, all of the departments involved both NHS and LA and you yourselves. That is where the decision is made. The Health and Care Act 2022 was quite explicit with this point. Healthcare is now 'Integrated and Personalised'.

There are a number of cases that point the way and the better management your dad has received in hospital has possibly meant that his behaviour has improved. If this is the case, and we are pushing this ourselves, is shows that he needs more care than a standard care package.

I hope this all helps.

On our case I spoke with the ICB today and although she said she is not really allowed to tell me the propsed charge from the specialist home she did tell me. Honestly it is eyewatering. My point here is that if you able to establish kind/gentle relationships with each area or responsibility they include you a lot more. I appreciate it is a lot of phone calls and emails and I have said in the past my Dh should be sainted after what he has done so I know it is no small feat.

You truly are in my thoughts xx

OP posts:
FlatOutAgain · 08/02/2023 11:26

Ok after looking the As and Bs look as if they are from a screening test which is used to see if the DST process should be followed. Once again this should only be guidance so maybe get onto the OPMH for further advice.

OP posts:
Tara336 · 10/02/2023 19:14

@FlatOutAgain thank you so much for all of that information. Originally we were pushing for respite, however, because DF behavior became so bad 9 care homes rejected him, which is why he was sectioned as we were genuinely scared of him, He is still in the MHU and a week later we have nit heard anything from the new social worker we were allocated. I am definitely going to appeal regarding the funding as DF was definitely being scored down when they weren't quite sure which box to tick. I saw DF yesterday and it seems at the moment that the sight of DM sets him off again and he gets agitated very easily, she is definitely the enemy in his eyes. DM left and waited in the car while I visited with him and he is calmer with me.

DF is not on any meds at all apparently. The risperedone he was given when at home was interacting with other meds and he was not able to even stand. The problem we have is in the MHU he is a model patient and after seeing some of the other patients I can see why they may think that. I did have a call after I'd got home from a nurse asking when I'd be visiting as there was paperwork to sign re his care and hadn't known I'd already been.

Access to the NHS app with DF notes is a really good idea, thank you, I hadn't thought of that. I will also try OMPH as I don't want his move to a home to be suddenly dropped on us. I'm just feeling so very tired at the moment so will approach that next week once I've rested.

I hope your DD is doing OK as I can certainly understand how hard MS is on us and our families

Tara336 · 21/02/2023 14:28

Had a phone call from MHU DF is in (still).he's attacked a member of staff! Thankfully they are OK! But where will this leave us trying to find him a place in a home if he's now so bad he's using his walking stick as a weapon?

DahliaMacNamara · 21/02/2023 16:48

Depending on local provision, possibly in a trickier spot than you might have been. MIL was prone to attacking and abusing hospital staff too, though as luck would have it she was relatively mobile throughout and didn't have a walking stick to hand. She'd been using one to hurt FIL frequently when she was still at home after surgery.
Hot drinks, on the other hand...she had access to those.
She wasn't the only one on the ward prone to unprovoked aggression, @Tara336 , and I'm sure your DF won't be the only one either.
We found there were very few homes that would consider taking MIL. She's been in a nursing home for just over a week now, and we're keeping our fingers crossed that they don't find any reason to invoke the clause in the contract that basically says she can be kicked out if her behaviour becomes unmanageable. I don't know what happens then. I hope it's just an arse-covering clause, or that it doesn't refer to behaviour related to dementia.

Tara336 · 21/02/2023 17:04

@DahliaMacNamara I'm going to pop in the home in the next couple of days and find out if this is a new thing or if he's behaved like this to them before. They had said he was very well behaved at the CPA meeting it was just the family he was attacking but it looks like things have changed

DahliaMacNamara · 21/02/2023 17:17

From many months of experience, I think it's likely that they would have told you or your DM about any previous incidents.
It's worth finding out whether any steps were taken to calm/sedate him afterwards. There are other medications besides Risperidone that can be used.

Tara336 · 22/02/2023 19:34

@DahliaMacNamara thank you, I've text DD as she's visiting tonight and might be able to ask someone. I'm going to query in writing the score given re CHC as they contradict themselves in several places and give him a low score on some areas where they have actually recorded that they have issues.

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