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Original poster

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

37 replies

kitkatnatnat · 01/12/2024 21:48

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!

OP posts:
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Christmaseason · 03/12/2024 16:18

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.

Original poster
kitkatnatnat · 03/12/2024 16:12

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.....

OP posts:
ArabellaFishwife · 03/12/2024 12:07

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.

TheyDidntBurnWitchesTheyBurntWomen · 03/12/2024 11:09

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.

CloudPop · 03/12/2024 09:23

@SoManySocksThisWeek completely agree with you

HoppityBun · 03/12/2024 08:50

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 · 03/12/2024 08:49

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. Flowers

BenditlikeBridget · 03/12/2024 08:46

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.

helpfulperson · 03/12/2024 08:43

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

Manypaws · 03/12/2024 08:38

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

Manypaws · 03/12/2024 08:36

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?

Original poster
kitkatnatnat · 03/12/2024 08:01

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 Flowers

OP posts:
I8toys · 02/12/2024 13:05

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.

stripeyshutters · 02/12/2024 12:17

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.

PermanentTemporary · 02/12/2024 11:57

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.

Original poster
kitkatnatnat · 02/12/2024 11:55

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.

OP posts:
Christmaseason · 01/12/2024 22:52

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?

Christmaseason · 01/12/2024 22:50

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.

notanothernamechange24 · 01/12/2024 22:47

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.

Viviennemary · 01/12/2024 22:45

Neolara · 01/12/2024 21:54

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 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,

Original poster
kitkatnatnat · 01/12/2024 22:45

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.

OP posts:
Christmaseason · 01/12/2024 22:41

kitkatnatnat

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

Original poster
kitkatnatnat · 01/12/2024 22:38

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.

OP posts:
Christmaseason · 01/12/2024 22:35

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.

Supersimkin7 · 01/12/2024 22:28

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.

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