Mum in care home with challenging behaviour, wants to go home

[kitkatnatnat]

Hi, after advice if anyone has been in a similar situation. Sorry this is going to be long but there’s a lot of backstory and things to be considered . Firstly, my mum is only 67 years old.
She was diagnosed with alcohol-related vascular dementia 2 years ago and has also had a stroke and several subsequent serious seizures.
She was living at home with my dad for a year after her stroke and they were coping although it wasn’t great.
She then spent a long time in hospital after one of the seizures and her dementia skyrocketed. Very confused, incontinent and frequent challenging behaviour. She was placed in a care home as my dad wouldn’t be able to cope at home even with carers going in as she’s up 24/7. The care home said after a few months they couldn’t handle her behaviour so she was sectioned and sent to a psychiatric hospital where she spent 3 months. During this time my sister and I searched diligently for a care home that would suit her needs, we must have looked at over 20 homes, however most said they wouldn’t be able to accept due to behaviour . Eventually we found one that specialises in challenging behaviour and after a stressful fight with social services (it’s expensive), they agreed to place her there. She is fully funded as she was entitled to section 117 aftercare.
Now the home isn’t very cosy, more functional and there are a lot of residents who are very mentally unwell and it can be very noisy BUT they are specialist in what they do and have assured us they won’t kick her out. Looking at her behaviour charts her behaviour is frequent and extreme, very physically aggressive to staff and other residents. Often triggered by the noisy environment and her wanting to go home, or believing that I am in danger for some reason. She doesn’t remember anything after the event and it’s so out of character as before dementia set in she was the gentlest soul, it’s unbelievable to think that’s my mum.
When she’s with us her family she is not like that but very depressed, cries all the time and has started saying she wants to die. She hates where she is and wants to go home. She has no insight into her condition so doesn’t understand why she’s there. She says we and the home are keeping her prisoner. She cries every day and my dad can’t handle it anymore, he is literally broken by the situation . He wants to take her home but there’s no way he can look after her. He has his own health problems and is also dependent on alcohol.
The only other option I can see is 24 hour care at home in shifts with a carer awake at night as mum is frequently up and wondering but we could never afford this and I’m sure social services wouldn’t agree to pay. I also think challenging behaviour would continue at home due to confusion and lack of insight into what she can or cannot safely do. My dad thinks she’d be more settled. He would have to stop drinking and smoking as my mum absolutely cannot be around that as she’d start again. I don’t even know if a care agency would risk assess it as safe enough for a carer to be there. And if it didn’t work out then what next??
Has anyone ever been in a similar situation? Is there any other option out there that I haven’t thought of?
I’m at my wits end.
Thank you and bless you if you’ve made it to the end of this essay!

Spoke to the sister at the home yesterday, she spoke to the GP and they have rejigged some of her medication , including put her on regular lorazepam as she's needing it PRN daily anyway. They had mentioned it about a week ago and I was unsure in case it knocks her out too much but yesterday I said just do it, see if it helps.
I'm very sorry to hear all of your stories too, and I hope things get better for you all and your loved ones. It's refreshing to talk to people who are going through the same though

I'm so sorry you are going through this, it's a nightmare

It doesn't sound as if your mum could be supported at home even with a full package of course, he needs are beyond that

One problem is that there is very little services for people who are younger with dementia, most care homes are set up for people who are much older

I would give it time, the care staff need to get to know her and find out where she is at in her journey and what is triggering her

Have you considered a playlist to help her calm when she is stressed?

She's 67, she probably doesn't want to sit and watch tv all day

I agree that the mental health team should be able to review medication. Both my parents became aggressive with dementia but anti anxiety meds made a huge difference

I’m really glad they’ve reviewed her medication. If that doesn’t do it, ask them to review again- there will be other things they can try.

You can’t have her safely home. I know you know that really but just reaffirming for you.

I’m so sorry. It sounds like you are all caring for her as best you possibly can.

Hi OP, My Mum also has dementia and the thing that confuses me is why the doctors intervene to keep her alive when she gets infections. I know it's probably non-PC to say it, but is it an option to move her to palliative care if she gets an infection? I just don't understand why people have to be kept alive when they are in this state. I wouldn't want to be kept alive if it was me.

Sorry, I hope it's okay to say that. I really feel so awful for dementia sufferers.

I'm so sorry you are in this situation. It's dire and just so heartbreaking to see your own mother like this.

OP it’s hard but once you’ve given up that fully funded place it’ll be almost impossible to get another. If they’re going to look after her whatever her behaviour then that’s where she should stay, imv

@SoManySocksThisWeek completely agree with you

Not the same thing but when my Nan was in a home with dementia she used to get very upset asking for one of her children to visit saying they hadn't visited for a while. This child had died so initially when she was told he had died she would morn him every time and obviously become very distraught. Eventually we just started saying yes he came last week and he's going to visit next again week and she would accept that with much less distress. Felt awful lying but ultimately she was much calmer and it was better for her.

Would your mum remember if you told her you were making the arrangements and she could come home next week? Just to give her some hope in the moments rather than have to constantly tell her she can't come home. Obviously if she will remember you saying it then you can't say it as that would make things worse.

MIL was in a nursing home with similar behaviours. She frequently asked to go home, but thought of home as the place she'd been brought up, rather than the house in the next village that she'd stopped recognising as hers before she went into hospital. If you put her in the car she'd think we were taking her to see long-dead relatives. It was heartbreaking, really, and the only way to cope was to detach a little bit. We used to tell her she could go home when she was better.

When she was leaving the psychiatric hospital for the care home we told her it was a respite place while she recovered from the seizure, and that's the line we've continued to take. The CPN who was dealing with my mums case in the previous care home advised us to keep it very vague. In many ways she doesn't have much concept of time frames and lives very much in the present, but I think it's dawning on her that she hasn't been 'home' in a long time. She has a great memory from the past though, she recognised and knew the name of a doctor she used to work with 30 years ago the other day!
She likes to go out so we do that a lot, coffee shops, garden centres, sometimes to me or my sisters house. She never remembers though and often says she hasn't seen us in ages.
Every call I get from the home I'm half expecting them to say she's had another seizure, and each time she had one she gets a bit worse. I totally understand what pp said about not wanting to prolong the agony. That's so hard to admit when it's your lovely mum but she wouldn't want this.....

I think you need to tell yourself is she’s warm safe and fed and others around her are safe too.

I know how difficult it is as I’ve been through a near identical scenario with my DM.

It is lovely that you can take her out even if she doesn’t remember it. My DM condition is further along and her mobility is now too poor to get her in a car but I treasure our coffees out that we were able to do when she first went to the nursing home. Now we have coffee in her room and play music as she remembers a lot of the words even though she doesn’t remember my name.