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!

@kitkatnatnat I'm sorry your mum is so poorly. I think if someone needs 24 hours care social services will push for a nursing home. They won't be able to justify the cost of 24 hours care x

Sadly, I suspect bringing her home would turn out to be completely unmanageable. It's hard enough when someone has dementia, let alone if this is accompanied by challenging behaviours.

Sometimes there are no good options and what you end up looking for is the least worst option. I'm sorry. It sounds unbelievably difficult.

I’m really sorry to hear this. Are you getting any support yourself?
is mum getting all the mental health support possible - could you perhaps look for Community psychiatric nurse to review, maybe look at her medications, a stress and distress plan made up with them and the care home that tries to make sure she is getting the best and most consistent support when her behaviour is more escalated?
what does the care home nurse /manager say?
if all that in place and still dire, maybe look for a social work review of her placement to explore if there might be somewhere better suited to her. I’ll be honest though, that will be just a different care home and the move itself will unsettle and risk increasing/progressing her dementia further.
I do feel for you, it’s a horrible disease.

With her dementia, do you think she knows what home is? Does she definitely want to go to the home she lived in most recently, or is it somewhere from her childhood etc? There's a possibility that you will never be able to fulfil this, even if she does go 'home'.

What a sad and stressful situation for all of you, I'm so sorry you're going through this. It might well take your mum a bit longer to settle in where she is. I'd be scared of bringing her home - if her behaviour is that challenging could she be managed by one carer? And what if the stress causes your Dad to drink/smoke and she starts again?

I'd keep her where she is for a bit at least and see how she does. Big hug, dementia is horrible and she's so young xxx

It’s sounds like she is safest where she is which I understand must be very upsetting for you. I would explore a Deprivation of Liberty Order with social services in case she insists on leaving (unless she already has something in place via her mental health).

Like pp mentioned, her idea of what ‘home’ is may not be that accurate anymore. When my mum had dementia in her 70s, she stopped recognising the home she was living in, and had lived in for 30 years, and home to her was her childhood home.

Now you’ve found a suitable place and ss are funding, I would be very reluctant to give that up. Maybe look for other care facilities to see if there is a quieter one that can offer the same care.

Sadly sounds like home isn't an option, we have the same (vascular dementia) with my partners sister. Heartbreaking to see here wandering around the care home with carrier bags asking when the taxi is coming to take her home. She thinks home is where she was born (83years ago), and not the house she has lived in for 30 years.
Like someone said above you can only hope for the least worst solution.

OP please don’t even think of bringing your mum home. You won’t cope, and as a pp says, you likely won’t get funding for anything like the amount of care she needs, and you’ll be left to get on with it. She’s absolutely in the best place, and you’ve been instrumental in getting that care in place. I speak from experience. My mum is a bit older than yours and has advanced dementia. It’s so awful - her behaviour is totally unpredictable and is escalating. She is at home with DH a myself, and it’s exhausting. She doesn’t sleep, behaviour is challenging and she’s a huge fall risk because she is unsteady on her feet and wanders round during the night. We’re in the process of trying to secure full time care because we just can’t cope any more.

I really can’t see any other alternative to what you’ve put in place and l wouldn’t risk losing a place in a care home prepared to take on challenging behaviour like this. Dementia can only get worse, and with respect, at 67 without full time care it will be a long and utterly draining journey for everyone concerned.

I’m so sorry op. That sounds incredibly distressing for everyone.
We had a similar situation with MIL, although not the same diagnosis. She required 2 carers 24/7 and a care home was the only option that would be funded. She cried endlessly and would fight with FIL about how it was all his fault for abandoning her, while also insisting her long-dead brother was visiting and various staff were abusing her (they weren’t, she was absolutely confused and out of it). Anyway coming home was not an option, but it was the other family members who needed to accept and make peace with it, and then they were better able to cope with the things that were said by MIL. Almost like they all needed to harden their hearts a little bit. Does that make sense? So once they could accept that it was the illness talking and not MIL, it was easier to gloss over the crying and complaining and change the subject, because sure enough in a few minutes her mood had changed and she was talking at my DS like he was her son 35 years ago.
I don’t know if it’s the same for you, but the distress was mainly the family and not MIL. Learning to respond differently made things so much easier. She needs professional care and for you to remain as family, not carers for her.
All the best op, it’s beyond hard.

It sounds like your mum is in fact in the right place. She is safe and has 24 hour supervision - something you couldn't guarantee if she was at home ( think carer goes sick and there will be no replacement)

Sadly vascular dementia in particular is stepped in behaviour - the presentation may change dramatically if she had another stroke / seizure depending on the damage to the brain. She sounds like she is going through a very agitated stage with associated depression.

I would speak to the staff at the care home about getting a review with the psychiatric team who may be able to prescribe medication to help manage the agitation and depression.

Sadly my MIL had similar with vascular dementia and it's very challenging and upsetting to watch someone change beyond recognition. She had vascular dementia and went through stages of being lovely, being hateful ( totally out of character) , singing hymns 24 x7 , psychosis : hearing voices and seeing people who had died years previously and some violent outbursts. Changes were all associated with another stroke / TIA.

She will take a little while to settle in ( common with elderly people and dementia sufferers when their environment changes ). Having got her into the home she is in, and you are aware how difficult it was to find the placement and get funding, I would persevere with her there and see how she settles with the benefit of a discussion with the staff and psychiatric review. It's hard but would be even harder if you tried to manage her at home - she would be a danger to herself and others.

Unfortunately I think your mum is in the right place for her to get the support she needs however difficult that seems to you and your dd. There is no way the system will be paying for her care where she is if it’s not been considered essential to her wellbeing.

From your description, OP, it sounds like your mother absolutely needs to stay where she is. She is safe and cared for. There is no other option.

I’m so sorry. You’re very lucky to have found a home that will take her. She can’t live in the community - you know that.

Part of ARBD is disinhibition (tactful word) and violence.

It’s not all about her - people are at risk from her, it’s incurable and the community offers nothing that could fix her even if it was. If she gets her hands on a bottle, she’ll get worse, by the way.

The trouble is that the bits of the brain that respond to calming drugs have been burnt away by partying for all those years, so
she can’t be calmed down or fixed.

SS can’t justify 24-hour home care.

I really feel for you and your family.

My DM’s circumstances are incredibly similar, she moved from a psychiatric unit to a care home and then to a nursing home who agreed to take her with one to one care at night. She is also given medication to calm her down when she gets really agitated and angry.

I really don’t think you should consider any options other than residential care.

I didn't expect so many replies so soon, thank you everyone for your kind words they really mean a lot. A lot of people on the outside don't understand how heartbreaking it is, I didn't either until going through it!
You have all said what I know to be true deep down, I think I just needed the validation that we are doing the right thing, especially when trying to manage both my parents emotions and wishes.
My mum has a Dols in place, they have been in touch again recently as it was flagged to them that my mum tries to leave but all agree she needs the care home.
I actually take my mum out fairly often to give her a change of scenery and she is great, almost seems her normal self at times, but her face drops when she goes back and she gets very tearful. She doesn't fight it in front of me though.
A few posters asked if she knows what home is, that is an interesting question. My dad says yes but I'm not so sure. She said to me on the phone tonight (my dad called while he was there as he couldn't take her crying anymore) that she can't remember what the living room or the kitchen looks like. I think she'd be just as disorientated if she went home.
To the person who said they are looking after their family member at home with dementia, it sounds so very tough and you have done your absolute best.
My sister and I are going to try to arrange a meeting with the care home manager and the community mental health team that she's under in the next week hopefully.

kitkatnatnat

When you have the meeting ask for a GP review, there may be some medication or combination of medications that will help her.

Just to add, she has been at this home for about 2.5 months now. So it's still early days but feels long for her I suppose.

I agree. There are no good options. It looks like she will need to stay in the place where she is now. It's the only option as far as I can see. Your Dad simply won't be able to cope but dealing with guilt is difficult,

I would look into what her specific triggers for her distress are (where possible) and see if anything can be done to help mitigate them.

If noise is a big issue for her, can she be moved to a quieter room? If not would some noise cancelling headphones help?

Has she got many of her things from home? If not could you take some more things in to her?

She does sound too unwell to be cared for at home sadly. Even if it were to be possible it probably wouldn't be in your Dads best interests to have her home.

Have you tried music with her, I gave the staff at my DM’s home a list of music and it can really help her?. She will never get better, or not be agitated, aggressive and sometimes abusive but for short periods of time it really does calm her down and it gives her pleasure.
Also is there any outdoor space at the home, if so even a few minutes outside can help.

Do the staff let her stay in her room on her own with a sensor mat, if they do this may help with the noisy environment if she has the radio on?

We've made her room as nice as possible with lots of personal touches but she still hates it arghh.
We encourage her to sit in there and watch tv sometimes and there is a sensor that alerts staff if she's up and moving about. I think a pp was right and we have to harden ourselves to it, especially my dad. It's such a wicked bastard disease.

Just a very heartfelt pat on the arm. My mum had to go to a specialist home when she tried to kill a nurse. I can't describe how different this was from my mum as she was before.

I'd stay in close touch with the staff team and ask for further psychiatric review of her medications. Ask what mood screens they are using and how she is doing, or whether you can contribute to monitoring her mood with some notes from your visit.

I agree with pps that the more you can distract her rather than respond to her tears as an urgent need (which they would have been before) the better. I assumed my mum would find looking at photos distressing but actually she always seems calmer when looking at her pictures, the same for gardening magazines.

This is the point where you have to step up even more and be that person in the caring role. You have to set your emotions to the side and remember that this is the best care for your mother. It is hard as I have been there but she is lucky that she has you to look after her. They don't know there is anything wrong with them and yes they do say lots of heartbreaking things. You have the added complication of the violence and then your dad. Leave her where she is. I'm so sorry that you are going through this and it is awful. Don't feel guilty. You are doing the right thing.

MIL is under DOLS with vascular dementia and in a dementia care home. Her behaviour just got worse and worse and it was unsustainable at home with FIL who also has dementia but is mainly forgetful and still managing day to day life. She is in the best place and is safe. She wants to come home and always asks where her money is. She is self funding at £2,000 a week so you are somewhat fortunate to get a fully funded place. I would not even consider moving her.