Sectioning (help/experience)

[FlatOutAgain]

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

From what I remember, it didn’t take that long to work. Within a couple of days Mum was calmer, a couple of weeks she had stopped accusing me of stealing every day. But I notice it when she misses a dose. I just wish she’d been put on it sooner. It’s really important she doesn’t skip a dose, if and when she is discharged I would imagine your DM would need a carer to make sure she takes it daily, especially considering it took her being sectioned to get her medication.

@FlatOutAgain you really are going through the mill, bless you.

Risperidone has been an absolute lifesaver for our daughter. Our experience of it is that it works within a few days.

A patient on risperidone will be closely monitored with regular blood tests. The only bad side effect my daughter has is it sends prolactin levels sky high and made her boobs huge.

Thank you both for the replies. Since my post I have had an update from the Hospital OPMH. I left a message on Friday and they kindly called today.

One of the psychiatrists dealing with mum saw her yesterday. He said he would describe her as a 'sweet old lady'. She was lucid and knew that in her words she need a new brain. He came away thinking that she was over the worse. He went to see her today and he said he could not believe the change. She was trying to get out of the doors (which were locked) by pulling and pulling at them. The staff could not get near her as she was violent and she saw the psychiatrist and said she recognised him as he was the man who was trying to kill her. I am 'glad' this happend as he was able to see the full range of mum.

He said this is a 'tricky case'. He has upped the risperidone from 0.5mg once a day to twice a day, morning and afternoon. They will monitor her again to see how this works. Prior to this they had been using lorazepam when she was in acute distress. But as the psychiatrist said this was a very short term measure to get through a few hours (it was being injected). He agreed, although in not so many words, that the community OPMH team should never have discharged her and that she had been cut adrift for her family to try to manage the situation.

We are where we are and I will go to see her tomorrow.

@SinisterBumFacedCat @fortifiedwithtea I am so pleased that you found the medication to be helpful and within a few days. I am hopeful.

Just re-read through the thread as I have some time. A number have suggested or based on your experience exactly what is now happening with the medication. Re-reading is very interesting as so many of your points are spot on. I picked up a couple of things I missed so will follow them up.

Thank you all, you have been incredibly helpful

I can’t offer much advice other than to say we had an almost identical scenario to this with my gran and ultimately she ended up very settled in a wonderful care home. She was always a handful but once meds worked and staff built a relationship she was happy (in her world) and incidents were minor and less frequent. Sadly she died only a matter of months after this but there is hope. All of the change and transition involved going from environment to environment at the minute will be hugely increasing the anxiety and intensity of her dementia. This will ease when she’s settled in one place. Look after yourself too xx

My DF was sectioned a few days ago because if his dementia. It was pretty bad last week, he was aggressive verbally but it was becoming physical. We called for help, we had a meeting with a social worker and he threatened me, and the social worker as well as other family members. We were asked to never leave DM alone with him. We took turns to stay all last week while respite was looked for, but no care home would take DF because of his behaviour. We pointed out we couldn't di this forever, we have jobs and families and DF was haven't Risperodone which made him even worse behaviour wise and he was kicking and pushing us. I told MH nurse and the social worker we can't keep it up nor can DM and they decided best course of action was ro section him. It was done within 24 hours. I've not visited him at the home yet but I will next week and am dreading it.

That sounds really hard too, tara

@WoeBeCome it's difficult to speak about in real life, I keep crying. Somehow it's easier to write down. Other family members are visiting for first time tonight, we are not sure what sort of reception we will get

@Tara336 the Staff in the mhu will guide you and want the best outcome for everyone. They will stay close and not put anyone at extra risk. It won’t be as awful as you imagine. The worst times were probably what led up to the section.

@Tara336 You are in my thoughts and I hope that you can find some resolution. It may be that my notes can provide a direction or some kind of insight. I hope so.

Spoke to Adult Social Care today and they have allocated an 'Independence Advisor'. It is part of Social Services. She was lovely and helpful and we spoke about NHS continuing heathcare as mum has complex needs. One of the psychiatrists has suggested a care home that deals with challenging residents and the Advisor agreed. It is hopefully clear to everyone that mum could qualify for continuing healthcare and that would be a huge weight off our minds.

Agreed a care package (self funding) for Dad today and they will come in twice a week on Friday and Tuesday. They provide full care so we can ramp it up if needed. This takes some of my workload so I hope it works out.

Took dad to see mum with my usual trepidation. Mum was asleep as she is being medicated with Lorazepam. They say that they are trying to get her off the Lorazepam so they can see how she reacts with the risperidone but that is very difficult due to her challenging behaviour.

Last night they found her with her hand over another patients mouth as she was upset that the patient was making a noise. Following this scare they have now put her in her own room with round the clock attendance. This means a person sat next to her bed all the time. Another new move means more difficulties as she tries to adjust.

I have gone past being shocked at her behaviour but given this latest incident they had no choice. We have a safeguarding plan in place which says she has to have 1 to 1 care but until now they have not put it in place due to resources.

Dad wanted to be taken straight home as he was so upset at seeing her. I know it is difficult for him but tiredness means I am losing my patience as he is not taking any responsibility and just wants to be looked after like a small child. I am back to work tomorrow so have told him he will have to try to manage as best he can. My Dh will do some filling in but he has enough to do and has done a huge amount for them already it seems unfair to ask him to do more.

thank you

I successfully got continuing care for nanna, complex needs needing 1:1 (2 or 3 to 1 at times! Most care homes refused her but persistence paid off. Covid finally ended the nightmare, we couldn't be sad, we had lost her 8 years previously.

Do what you need to do to keep the rest of the family safe

@FlatOutAgain thank you, yes your notes are helpful. It's all so overwhelming right now

@Mum5net other family members visited last night. DF was tons calmer, he did apparently come out with some odd comments again, muddling my DD with me etc. He wasn't aggressive at all, so I assume he's being medicated.

I'm hoping DF qualifies for CHC as DM can't have him home, despite his improved behaviour as he's so unpredictable and was quite scary last week.

**

@FlatOutAgain @Tara336 Absolutely hoping the nightmare and chaotic times you are both experiencing now are the last few mega-turns of the super fast roller coaster. Eventually my DM moved to a calmer piece of fairground equipment. It's the disentangling which is incredibly tricky which sounds like the stages you have both reached.

@Mum5net thank you so much, it was hard seeing him today, he looked at me like I was crazy when I tried to explain why he was sectioned, he remembered nothing of the preceeding few days! A nurse said generally dementia patients don't believe or remember they are ill so to change the subject. We saw flashes of aggression again. We were saying the disruption and upset we have been through as a family is awful, but DF has no understanding that this hurts us too. Are trying to see the sectioning as a good think, jn that he will now get help that we've been begging for

Absolutely, @Tara336 it is a good thing as the professionals on the ward have absolutely seen it all before so many times. It literally means the family can breathe and not be looking over their shoulders 24/7 for the next bad thing to kick off. My DC were sitting their GCSEs/ A levels when it happened to us. My DF was in another hospital. Don't encourage your wider family to rush to attend every visiting time. Genuinely take this respite as much for yourselves as for him. He will be doing an awful lot of sleeping. Sounds like Team Tara could do with some of that. Be kind to yourself.

Been a few days. Mum is still in hospital and still under one-to-one supervision which is quite sad as so far apart from one woman she has had a man sat next to her bed 24hrs a day. For an elderly woman this can be an uncomfortable situation, but with resources as they are there is no choice.

The Risperidone 'seems' to have brought mum's intestity down although there have still been several incidents.

The discharge was being looked after by the complex discharge team (didn't know they had one) in conjunction with the OPMH and the Dementia and Delirium team. It has now moved onto the Integrated Care Board (formerly the CCG). They are waiting for a care report from the Dementia and Delirium team which they should have today and will then pass the 'needs' over to the Placement Service (formerly the Care Home Selection who lost the contract). They will contact us with appropriate care homes. They will fund the first 4 weeks and then assess mum using the Decision Support Tool (DST). The NHS uses the ICB for complex needs or end of life care otherwise it goes to the Local Authority.

I thought it may be worthwhile explaining the process as it changed in 2022. Will now wait for a call from the Placement Service with care home options.

We already have a very good idea which home it will be. Unfortunately it is quite a distance for dad and will limit his visiting options and I can't be a taxi service for him. The home, if chosen, will help mum unlike the last home which was great for dad and a disaster for mum.

I saw her today and she is utterly depressed. I called the Psych team yesterday to be told 'your mum is depressed we are going to give her Sertraline'. Cue me saying NO! I asked them to look at mum's notes for June 2022 where she crashed after being given the drug with sodium and potassium levels dangerously low. 3 weeks in hospital to get the levels right. The person I was speaking to say 'I have to go now to the ward immediately to stop it happening. I have just looked at the notes and we should not have missed that'.

Everyone is working hard but the lack of resources means things get missed. I can't fault their effort at all but we spend a lot of time filling in the communications between organisations.

Thank you as always

@FlatOutAgain We have a CPA meeting at the home on Friday, DF section ends the week after next so I am guessing they will tell us what happens next. My DF has also been hospitalised with low sodium and potassium levels i wonder if this goes hand in hand with dementia?

DF does seem calmer when we've visited but there are the flashes of anger and aggression still there, they were unsure if its from the dementia or delirium from an Infection he had I'm again assuming we will be told at the meeting.

@Mum5net thank you so much, we have all had a good rest since DF was sectioned, I don't think any of us realised just how stressed and exhausted we have been. Feeling nervous about what happens next, but DM has admitted she cannot have DF home as she can't cope and we are concerned he will return and become aggressive and difficult again

@Tara336 low sodium and potassium levels happened to mum. She crashed with them and ended up in an acute ward for 3 weeks. This was clearly linked to the sertraline she had just started.

She is still in hospital and she has low sodium levels which they are linking to the risperidone although the psych team disagree. They have halved her dose and there has been a slight improvement.

She is on memantine now but that has not been mentioned.

What medication is he on and has he been given something new recently?

We have both hit the buffers at the end of the track and need help. Dh has suffered from neuralgia which he gets from stress. He has done so much and needs a rest from it all but that is not going to happen until mum is in care from hospital. We are pushing everyday for a solution as mum will have been in hospital 4 weeks this sunday.

Thinking of you FlatOutAgain. Pushing for a solution is so tough, I know, and we were never even close to your mum's complex needs. Your parents are very lucky to have you both both looking after their best interests at a great cost to yourselves. My DMIL was in hospital approximately 12 weeks altogether in the year before we found her a good care home. Didn't feel good but at the time it was the only place for her. Look after yourselves

No wonder you have hit the buffers. Can you both take 72 hours off @FlatOutAgain if your DM is in hospital? Tell the staff you are absolutely burnt out and just haven't physically got band width? They will see this all the time with weary families and rally around your DM for the period that you can't be there. We never experienced this high intensity for as long, although that being said, our DF died unexpectedly while DM was under section, but we had had a bit of a rest and our tanks had been replenished. Wishing you well.

@FlatOutAgain had a meeting today a DF isn't on anything but his behaviour is much better on the ward then at home. This apparently is normal to see. I visited him afterwards and he has deteriorated even more in less then 7days since I last saw him. He couldn't speak, cried and didn't know my DM name

@Tara336 I am really sorry you are going through this and mum's demential was certainly fasttracked in hospital but that is largely due to the change of environment.

@Mum5net Thank you we have little choice just like most people in our situation. Things have moved on today after Dh spoke to the placement team last Friday to ask for more urgency.

The care home that assessed her said they would take her but had no vacancies. My Dh told the placement team this 2 weeks ago. Anyhow they are part of a group so can fit her in at another home an hour away. This is not a solution so we explored home care and that is also not a solution. We have agreement that if mum goes into the home an hour away she is top of the list to be transferred to the preferred home. So we have no idea on timescales. We already know we will have to go with it as there really are no other complex needs homes near us. If/when she is transferred it will be more than half a day for me with picking up dad, running over to the home, seeing mum and coming back etc. It is not something I can sustain but lets wait and see.

Thank you

If you Dad is willing, taking your Dad to see Mum is something a carer could do for him.

@FlatOutAgain it's so horrible for all of us watching this happen. DF has a DOLs order now I don't know if that means it will be even more difficult to find a home to accept him. The staff say he behaves well for them but that they expect he would revert to aggressive behaviour if allowed home. He was apparently more with it yesterday. I think tbh he would be deteriorating wherever he is as he was visibly worsening at home, however, I noticed in the home the changes are weekly whereas at home it seemed to be fortnightly.

@FlatOutAgain
This happened to us, too. When my DM was released from the MHU she went to a community hospital in the wrong direction, so like you over an hour away. We didn't have POA, so while it was in her best interest, and we were consulted, there wasn't really any choice. DSis visited midweek and I went at weekends. It lasted about 4-5 months until we got Guardianship. (We also were trying to sort DParents house as DF had fallen downstairs while stopping the batteries on the smoke alarm and died four days later.)
I know it's hardly ideal but I guess you have to accept this place and see how it works. It boils down to take it or leave it and so you just have to hope for the best. We were spared about factoring in Dad's visits, which sounds very cruel but like your situation, we were pretty much burnt out, and at the end of our tether.
I can't remember why we didn't FaceTime our DM but maybe that might be something that can happen for you and your DF throughout the week when you can't visit?
Genuinely DM was so spaced out she didn't really have too much comprehension about the passage of time - but at that point knew our names still. I guess what I'm trying to say is that she might be less aware than you think and won't be too angry with you for not being able to visit as much as you would want.
@Sucessinthenewyear makes a good point about getting someone else to do it. Does DF have Attendance Allowance funding?
Is there a friend or relative who could visit even once a fortnight?
Because their situation changes so quickly, its very hard to keep up with DParents and run your own life at the same time. That's why I keep harping on about getting rest when you can😀I am self employed so I just did less work but that might not be open to you. It was a very low point but it does get better. You and your DH are doing your very best. Your DM is safe and being cared for so it's OK to not be ever present.