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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To wonder when a care home is appropriate.

48 replies

Nug97 · 27/12/2024 22:06

My Daunt has early onset dementia. She is 63. Things have progressed recently. She has withdrawn from her adult children and won't see them for very long and she sadly lost her husband earlier this year. I am asking here with permission from them as they don't know what to do. She has carers but doesn't interact much with them and apparently has told them to fuck off before and refuses help. She needs help cleaning the house and reminding to eat but she doesn't eat much. She won't bathe or brush hair and refuses help with this. She is incontinent and had an accident and apparently refused to clean up. My cousin had to put things in the wash and she was angry trying to hide the soiled clothes. Her car has now gone but she does leave the house by foot. She walks to her friends house which is fairly nearby. Apparently she goes there up to 10 times a day. Returns home then goes back. She is very restless. She is also convinced she still works. She doesn't turn up to work but she is retired and convinced her work are ringing her constantly and swearing at her telling her to get to work. She also talks about very inappropriate things in public.

OP posts:
JollyHollyMe · 27/12/2024 22:09

So typical dementia?
You seem to be blaming her for things that are part of the disease?

Does she have carers in 4 times a day? If she is refusing to be washed then do they do her personal hygiene and washing etc ?

Have they had a continence nurse round? They can help with pads etc - all free on the NHS.

She doesn't sound ready for a home yet.

Nug97 · 27/12/2024 22:11

JollyHollyMe · 27/12/2024 22:09

So typical dementia?
You seem to be blaming her for things that are part of the disease?

Does she have carers in 4 times a day? If she is refusing to be washed then do they do her personal hygiene and washing etc ?

Have they had a continence nurse round? They can help with pads etc - all free on the NHS.

She doesn't sound ready for a home yet.

Edited

Sorry, definitely not blaming her, just explaining the stage its at. it's very sad to see of course. my Dcousins just don't know what to do to best help

OP posts:
JollyHollyMe · 27/12/2024 22:13

Nug97 · 27/12/2024 22:11

Sorry, definitely not blaming her, just explaining the stage its at. it's very sad to see of course. my Dcousins just don't know what to do to best help

Ok- sorry- I read it as her fault

She cant help doing any of those things.
Is she fully incontinent?

Nug97 · 27/12/2024 22:13

I don't think the carers are helping with that as she won't let them

OP posts:
JollyHollyMe · 27/12/2024 22:15

Are they claiming attendance allowance- very easy to get ?

You need carers who will spend time cajoling her to get washed. You need easy on/off clothes- mine wears nice lounge suits now from John Lewis. They also help with toileting as quick pull down/east change.

Echobelly · 27/12/2024 22:15

She sounds unhappy but not like she is endangering herself - yet - which would definitely be the point to consider a home/live in carer.

My step-grandmother's daughter got her a live in carer when it became obvious that (between dementia and failing eyesight) her mum couldn't tell when food was mouldy but they're lucky to be able to afford that.

Nug97 · 27/12/2024 22:15

JollyHollyMe · 27/12/2024 22:13

Ok- sorry- I read it as her fault

She cant help doing any of those things.
Is she fully incontinent?

She goes to the toilet a lot but is also having regular accidents now

OP posts:
Mydogscoolerthanyourdog · 27/12/2024 22:17

Might be worth posting in elderly parents topic as although your aunt is not thus lots of people will have dealt with dementia issues and be able to advise. The Alzheimer’s society website also has a forum that might be helpful. It is such a hard disease to navigate x

JollyHollyMe · 27/12/2024 22:17

Nug97 · 27/12/2024 22:15

She goes to the toilet a lot but is also having regular accidents now

Sounds the same stage as my Mum. Goes to loo and needs help 20-30 times a day and night. Has a lot of accidents and cant really mange her own hygiene/pads. The continence nurse was a big help. We now have pads within washable pants and use wipes and nappy sacks. The main issue is the constant wanting to go- it is relentless.

Nug97 · 27/12/2024 22:18

Echobelly · 27/12/2024 22:15

She sounds unhappy but not like she is endangering herself - yet - which would definitely be the point to consider a home/live in carer.

My step-grandmother's daughter got her a live in carer when it became obvious that (between dementia and failing eyesight) her mum couldn't tell when food was mouldy but they're lucky to be able to afford that.

Thank you. My Dcousin bought her a new coat and some joggers but she won't wear them. She will only wear these jeans as she says the other clothes bought for her are not hers

OP posts:
Endofyear · 27/12/2024 22:19

It does sound like it might be time to think about a residential living situation. It would have to be somewhere dementia specific as she sounds like she has quite high care needs - feeding/personal care/safety. Can your cousins talk to adult social services? When was the last time she had a needs assessment? If she has deteriorated significantly since then, they should as for another assessment.

JollyHollyMe · 27/12/2024 22:21

If she has money to pay then residential may be an option
Not sure she meets the funded threshold yet- but it can change really quickly

TooExtraImmatureCheddar · 27/12/2024 22:21

Her age might be an issue because care homes are generally aimed at over 65 or under 65, and the younger group will be designed for people with learning disabilities rather than dementia. Have your cousins asked for a chat with her social worker or homecare coordinator? Did she get carers through a social work assessment or has it been entirely private? Would she be able to pay for a care home or are you hoping for it to be funded by the local authority?

PermanentTemporary · 27/12/2024 22:22

Does she wander at night? She sounds fairly vulnerable, has she fallen at all in all these wanderings?

To me I dont think anyone would blame them for thinking it was time for a care home. Incontinence and wandering are big triggers. If she has carers, does she have a social worker? They could talk to them?

It does sound as if she would hate a care home. I did know an older lady very confused who just has live in care. They go with her if she wanders and call an ambulance when she falls over. The relative with lasting power of attorney is very sure the lady would hate a care home and that it's better to stay out and die sooner. I probably agree with her tbh, if the option is there. She is moderately cooperative with incontinence pads though, which helps a lot.

Nug97 · 27/12/2024 22:25

TooExtraImmatureCheddar · 27/12/2024 22:21

Her age might be an issue because care homes are generally aimed at over 65 or under 65, and the younger group will be designed for people with learning disabilities rather than dementia. Have your cousins asked for a chat with her social worker or homecare coordinator? Did she get carers through a social work assessment or has it been entirely private? Would she be able to pay for a care home or are you hoping for it to be funded by the local authority?

That's a good point, will look into this thank you. My Dcousins are overwhelmed due to the death of their Ddad and their mums health so are looking at what they can do to navigate through it. The carers are private I believe. I think this has been possible due to inheritance

OP posts:
maggiecate · 27/12/2024 22:27

Does she have Powers of Attorney prepared so her children can make welfare and financial decisions if she’s unable to?

One thing that might be worth investigating is whether she’s got a UTI - increased frequency of urination and a sudden worsening of her cognitive state could be related to an infection. https://www.alzheimers.org.uk/get-support/daily-living/urinary-tract-infections-utis-dementia

Urinary tract infections and dementia

Urinary tract infections (UTIs) are a type of infection common among older people. If a person with a memory impairment or dementia has a UTI, this can cause sudden and severe confusion known as ‘delirium’.

https://www.alzheimers.org.uk/get-support/daily-living/urinary-tract-infections-utis-dementia

TooExtraImmatureCheddar · 27/12/2024 22:27

Is she in Scotland or England? The funding rules are different depending on where you are.

Nug97 · 27/12/2024 22:29

PermanentTemporary · 27/12/2024 22:22

Does she wander at night? She sounds fairly vulnerable, has she fallen at all in all these wanderings?

To me I dont think anyone would blame them for thinking it was time for a care home. Incontinence and wandering are big triggers. If she has carers, does she have a social worker? They could talk to them?

It does sound as if she would hate a care home. I did know an older lady very confused who just has live in care. They go with her if she wanders and call an ambulance when she falls over. The relative with lasting power of attorney is very sure the lady would hate a care home and that it's better to stay out and die sooner. I probably agree with her tbh, if the option is there. She is moderately cooperative with incontinence pads though, which helps a lot.

Thank you. She does which is something she never would do before but now she will leave in the dark. They thought about assisted living but they thought it might increase the chance of her getting lost, if she wandered from there and didn't know the area. No falls that I know of yet

OP posts:
CharlotteCChapel · 27/12/2024 22:31

My MiL refused to have a carer but was happy to see a "nurse".
Dementia is different for everyone, for example my late MiL only became incontinent at a very late stage.

I found this forum to be invaluable, it's great for both info and a safe place to rant.

Pumpkinspice7 · 27/12/2024 22:33

Where does she live? If in Scotland there are mental health teams who can monitor her situation and refer to appropriate services. She could be given medications to help her feel more rested and relaxed.
She may need hospital admission to a mental health hospital to monitor her more closely and find out if she can go home or need a care home.
The family should get in touch with the GP for them to refer to the appropriate teams

TooExtraImmatureCheddar · 27/12/2024 22:34

Falls pendant/GPS tracker? I think you can also get door alarms so you can be alerted to her going out (or a Ring doorbell does the same job).

visitbreakfast · 27/12/2024 22:36

@JollyHollyMe

Are they claiming attendance allowance- very easy to get ?

She wouldn't qualify for AA. It would be PIP/ADP depending on where she lives.

Pumpkinspice7 · 27/12/2024 22:36

Also lots of devices can be used at home like door sensors to stop her leaving and trackers if she does leave home so she can be traced. There's a Herbert protocol in place in Scotland which helps the police to find people with dementia if they have got lost

JollyHollyMe · 27/12/2024 22:38

visitbreakfast · 27/12/2024 22:36

@JollyHollyMe

Are they claiming attendance allowance- very easy to get ?

She wouldn't qualify for AA. It would be PIP/ADP depending on where she lives.

Yes. Didn't realise she was only 63.