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Dementia and Alzheimer's

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Tips on getting mum into a care home

42 replies

Frustratedaughter · 26/10/2022 13:31

My mum has severe dementia. Shes still living on her own but has carers, which she hates, coming into the home 4 times a day. As they do, she has deteriorated and she needs to go into a care home. I love her very much and it kills me to do it. But she's bored and I think shes scared at nights - although she wouldn't admit it.
I really have looked at every other alternative but she needs company and activities that she can join in with so she can enjoy her life, and not just exist, staring into the distance.

I've found a fantastic home for her. It feels just like a family home and not a care home. It never smells of wee or poo, they have activities going on and the staff don't seem to leave. But mum is so stubborn. The manager came to assess her and my mum was awful to her and she didn't even know it was to do with going into a home. People think dementia sufferers are stupid but they're not. She knew something was happening and she was horrible. The manager is dubious about taking her because of this negativity and keep saying no to everything.
Anyway, she's offered for mum to go for lunch and if they think they can handle her, they'll keep her but if she carries on being awful, we'll have to collect her and bring her home.

Does anyone who's been through this have any tips? Anything that w ,can do to keep her there for a few days to acclimatise. I've thought of saying it's just while I'm away, or a break for her, or work being done at the house. But she'll figure these out as lies, I think. Or won't care. Anyone got any suggestions or things that worked for them? Please. 🙏

OP posts:
Frustratedaughter · 29/10/2022 20:41

Unfortunately, @Shallysally , they don't do day care. But I've been during the day on different occasions and they have an activities co ordinator and do a variety of things, music, craft armchair exercises, going out for walks into the village, and so on. They also have 4 different social rooms and they were all being used.

I've been round all the dementia homes in the area and read the CQC reports. I haven't seen any home where staff were anything other than lovely to the residents but I don't like that they smell of wee and poo. My mum doesn't want to sit with that smell during the day. I'm sorry if people don't like that. The home I'd like her to go in has double incontinent residents and when they mess themselves, they're taken away and cleaned up - the same I would do for my relative at home. And if they use the main toilet, it's cleaned and freshened straightaway to diffuse the smell. Again like I would do at home.
At the moment my mum doesn't require dementia nursing although I know she will. I've been round those to find the right choice of those when the next stage happens and I can't see my mum in there now. She's just not at that stage.

Im not sure what you mean by "older people's memory service". She's had a memory assessment and I was told it would open the world to me. Not seeing that as yet! I will contact them, though, and ask them about her going into residential care. I've found within the nhs and charities involving dementia, everyone is kind and says nice things and asks me how I'm feeling, but there's very little practical help for self-funders. I've claimed the bits of money I'm entitled to but I'd give it all up for someone to step in and give me real practical support, not words, and give me proper, honest guidance on how to handle things.

I am indeed trying to get ahead of the game rather than reacting to emergencies because all the info I have read, says that the more plans that are in place, the better the outcome for her.
I don't like lying to my mum but I have to to get her out of the house. If I just said, "shall we...?", we'd never do anything. She needs a push. But if you have a better technique to get her to try things, (she's been to 2 day care clubs and refused to go back), then I'd be grateful for the advice. The same in so far as accessing any practical help from SS or the council. And I thank you for your advice and I'll contact SS on Monday and arrange an assessment of her in case she needs to be placed somewhere against her will.

OP posts:
Shallysally · 29/10/2022 22:03

The home sounds lovely. I’d be having a conversation about how they would be able to support her as her dementia progresses. It would be such a shame for her to settle there and then have to be moved if her behaviours become more challenging.

You need to be asking about the other residents, if the staff feel your Mum will be a good fit.

The older people’s memory service may be called something different in your local authority. Generally they are part of mental health services, your Mum’s GP should be able to provide you with contact details, or the Single Point of Access for mental health.
How was your Mum diagnosed? If she had a scan then she should be known to that team.

I understand about needing a push to do things. Remember, home is still her safe place. Does she still have an awareness of her memory issues? If so, it’s common for people with dementia to become withdrawn for fear of looking silly when out when they can’t find a word they need, or get lost in a new building etc.

Meeting new people is really challenging for them, having to make conversation, remember names, give information about themselves.

Frustratedaughter · 29/10/2022 23:30

Oh, Sally, I'm talking to someone that knows what they're talking about. Thank you so much.

It's good to be reminded that her home is a safe place. It's where she lived with my dad and she knows it well and feels comfortable there. But it is becoming scarier. Especially with the dark nights.

She knows she has dementia and she wants to talk to people but she's embarrassed because she knows the words she's using are all wrong. It's so sad. And on top of that, she does try to concentrate on what is being said and it must be exhausting for her. She really likes it when we go out and she can listen to me talk to strangers so she can listen, absorb bits and laugh and make the odd comment but not feeling like she has to.

However with other dementia sufferers, she can have conversations in gobbledegook and they respond like they understand. I think they just chat what they think, can't really absorb what the other person is saying so they just respond what they're thinking back. Two separate conversations but they seem happy enough. Mums friends can't really communicate with her anymore and mum actively tries to avoid talking to them out of embarrassment, so she needs some new friends that she can be comfortable with. Just sitting at home, watching the same telly, is boring for her. She needs to be talking to some like-minded people. She's been to different daycare settings, and liked some of the people, but refuses to go back. That's why I want to expose her to things that I know she's scared of so she can see it's not so scary.

I have considered moving in with her but she's still not going to have a great quality of life. She's awkward with food with me but I think when she's with other people and they're eating, she'll eat too. She'll have company all day. And she'll be doing things.

She didn't have a scan. I was a bit 😏 about the process actually. The nurse asked her loads of questions about herself for about 45 mins. She didn't slow her speech or simplify her language to find mums level. Then after 45 mins when it was clear how much she couldn't do, the nurse said she was going to start the test. So my poor mum was humiliated for 45 mins over what she didn't know, was exhausted trying to concentrate and then they wanted her to do a test which she knew she was going to fail. So she stood up and said, "no I'm not. This is ridiculous. I'm going home". Normally I'd be frustrated bt her but I actually wanted to give her a round of applause.

So the doctor we returned to see told us she had Alzheimers from the questions she answered and, because she'd had to have a heart bypass, she said she will have vascular dementia as well. A mix. So, I don't know, it's seems a bit arbritary but that's all we've seen.

If I can get her to stay for a few hours on Monday, hopefully I'll have a better idea if they see how she fits. Certainly the other patients seemed a lot more her level than in other places and the manager thought ability-wise she'd be fine. It's just her attitude of saying 'no' to everything because of her fear. I do think all the dementia homes would take her at her dementia stage because she's not much trouble. But her attitude isn't great and I want it to be a place that feels homely and stimulating.

From your advice, I'll speak to social services and approach the GP to see if our memory clinic is the point of access. And then approach them for further advice.

Thank you so much for your help and just being there to understand. It's an awful illness and as a relative and carer, you just feel so alone. Even though there are lots of groups you can attend to speak to others, at the end of the day, it's still yourself feeling guilty and making the decisions that affect someone else's life so much.

OP posts:
PritiPatelsMaker · 30/10/2022 03:55

@Frustratedaughter it might be worth trying to access your local Carer's Hub ad well. Not only will they know what you're going through, they can be an amazing source of information about local services and homes Flowers

Shallysally · 30/10/2022 08:56

So hopefully things will go well tomorrow. If they don’t, there are things you can do to make things at home easier for you both but I won’t overload you now.

So I’m presuming that the health professionals ruled out trialling your Mum on Aricept due to her previous heart condition?

And yes to contacting the Carers hub as @PritiPatelsMaker has suggested.

Keep us updated and I’ll look out some more information for you.

Inthisissue · 30/10/2022 09:06

Shallysally · 30/10/2022 08:56

So hopefully things will go well tomorrow. If they don’t, there are things you can do to make things at home easier for you both but I won’t overload you now.

So I’m presuming that the health professionals ruled out trialling your Mum on Aricept due to her previous heart condition?

And yes to contacting the Carers hub as @PritiPatelsMaker has suggested.

Keep us updated and I’ll look out some more information for you.

Can I possibly jump in and ask what Aricet is please? Dad not quite at this point but I'm peering into a similar future I fear

Muchtoomuchtodo · 30/10/2022 09:46

If your mum is self funding have you considered having a live in carer?

someone who she can get to know well, can support her tondi the things she enjoys, take her out etc while staying in her own home.

you might be surprised that it’s a similar price to a full time placement in a home.

Shallysally · 30/10/2022 10:14

Inthisissue · 30/10/2022 09:06

Can I possibly jump in and ask what Aricet is please? Dad not quite at this point but I'm peering into a similar future I fear

Aricept is a medication that helps with the the symptoms of Alzheimer’s.
www.nhs.uk/medicines/donepezil/

It is prescribed by older peoples mental health and they monitor the efficacy and address any issues.

Inthisissue · 30/10/2022 10:40

Shallysally · 30/10/2022 10:14

Aricept is a medication that helps with the the symptoms of Alzheimer’s.
www.nhs.uk/medicines/donepezil/

It is prescribed by older peoples mental health and they monitor the efficacy and address any issues.

Thank you!

Shallysally · 31/10/2022 19:47

How did today go @Frustratedaughter?

PritiPatelsMaker · 02/11/2022 11:50

How are things this week @Frustratedaughter?

orangetriangle · 04/11/2022 01:06

I would echo what others have said and please get her into a care home that specialises in dementia sadly it will only get worst and then you will likely have to move her
We looked at the all singing all dancing hotel ones and they refused my mum despite having a whole upstairs dedicated to dementia
My mums dementia is become quite advanced and I believe they didnt want to take her because of this perhaps they had a fair few at that stage and it was like the straw that broke the camels back as it were they said they couldnt meet her needs and my mum is not aggressive orciolent in any way
We have found another older type one that isnt all singing all dancing but gets good reports and they all looked clean and it didnt smell and they specialise in all levels of dementia. I would hate to have to move her again
She is having her assesment Tuesday and to e honest it cnt come soon enough she has carers coming to her and they are struggling
Honestly judging by my mum who was diagnosed 18 months ago with alzheimers and vascular dementia it can and does get considerably worst the difference in 18 months is alarming sadly

PritiPatelsMaker · 04/11/2022 08:00

orange often the more basic ones are the most caring anyway and it's really good that yours has good reviews.

The one DMIL was in was a little shabby but couldn't have been more caring, they were lovely, right up to the end.

orangetriangle · 06/11/2022 03:15

thanks Priti assesment tues so fingers crossed my poor mum😫

NormaTheWife · 06/11/2022 04:21

My experience of this is that we persuaded our Mum to go to into a home for a short spell to see what it was like. She had early onset dementia. She walked out of her house and off we went to the home - lovely room etc but then started to say she didn't want to be there. It ended up her shouting at us and saying we had her where we had always wanted her to be. It was one of the worst experiences of my life but we knew it had to be done. Because of her weakened mental state she settled in easily and never went home. My Mum was seen by the social services before this and declared as not safe to live on her own but that was it - over to us. Care had to be paid for. Care in the home is not sufficient for people with this condition. I understand all about the rights that a person has but there comes a point where families may have to manipulate the truth. Best of luck @Frustratedaughter

PritiPatelsMaker · 06/11/2022 07:41

Fingers crossed for Tuesday then.

Let us know how you get on Flowers

orangetriangle · 06/11/2022 21:17

thanks Its the financial side of things that seems to be a minefield
it does make me cross in all honesty my dad who died 7 years ago saved all his life for a little best egg and their house but that will all be swallowed up with mums care now and from what we can make out when its fone the family will need to top up as council loan diesnt covering that's even if they happen to have council beds
think there is something like an indemnity insurance we need to look into also a loan from the council. Yikes it's rather worrying with foster of living crisis candour own mortgages to pay for

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