Urgent advice please

@lovelthesun247 please call Age UK in the morning. They're fantastic and are the absolute experts on this stuff. They were amazingly helpful to me in the space of just a single call, on a couple of different occasions with different problems..

https://www.ageuk.org.uk/services/age-uk-advice-line/

Nope, absolutely not. Both my mum and my MIL ran out of their savings and the cash from the sale if their homes. SIL's, mine and my brother's income weren't factored in at all, not have we needed to spend a penny of our own money..

My sister owns the house and doesn't have the worry of becoming homeless. My mum lives with her and has done since our dad passed away. She is also financially stable, so we would have to self fund to move our mum into a home, but still be financially ok.

I'm not sure if I've read this correctly. You and your sister don't have to fund anything to do with your mum's care in a care home. Only your mum's income and savings are taken into account. So yes, her savings will deplete, but if it runs out (or if she is already below the threshold) then the council steps in, not you and your sister.

Please don't be put off by council services. My MIL was in an absolutely wonderful council run care home, my mum in a shockingly poor BUPA one.

Finally, don't make the mistake that SIL and I did. We wanted MIL to be at home for as long as possible. We left it too late, and our decision could have caused her death, when she wandered far from home, rurally, in the night, and was only found by absolute luck. I can't imagine her distress and what might have happened to her but for that fortuitous find.

I think you and your sister need to have a serious talk and both agree on a plan of action. The cold reality is exactly what a PP said - your Mum has the mental capacity of a toddler, and there isn't anyway your sister could work full time and still care adequately for one. Your Mum isn't the Mum she was - and you're not doing what's wrong for her, you're doing what's right. There are a lot of good care homes out there as well as poor ones, and it can take some time to find the right fit but the sooner you start looking the better for her. Good luck.

Check if your sister can make and register a “What If” plan in her area. This holds all the information that someone would need to know if your sister were taken ill or had an accident, e.g. mum's medication, who to contact (you)

You are certainly not alone, although it can feel like it.

I looked after my DM for about 2 weeks when my DF was admitted to hospital. She had dementia, never had a firm diagnosis but it was probably vascular. At the time, Mum was mobile, and into hiding things. I thought I would be able to get on with some work - no way. Up and down every few minutes, Mum wouldn't settle.

My point - Your Dsis will not be able to continue working as your DM is now demonstrating she requires more active looking after. This will continue to worsen sadly. In the same way as it's not possible to look after a baby and work from home, you can't with a parent with dementia.

Ask for an assessment for your DM and for your DSis. Would they consider a few sessions a week in a day centre for example ? They can plug into all sorts of support services - laundry services for incontinence, advice of benefits and finance, carers, out of home groups.

Contact Alzheimer's Society - they are very good at local support.

@lovelthesun247 how long has she been on lithium for? i presume she has long term treatment for mental illness prior to her dementia diagnosis? sometimes keeping a diary can be useful as it may be difficult to work out what behaviour links to her prior mental health issues, what links to her vascular dementia and what may or may not be due to something like UTI, constipation or lithium toxicity - as she progresses in her illness and she has trouble in eating and drinking adequately the lithium dose may need to be monitored more regularly as this in itself can be a source of confusion ( and incontinence actually). i think you need a good sit down with the GP or community matron/specialist nurse (if you have one )to try and discuss options.

You need a nursing home that can handle dementia patients not a residential home.

Maybe. A specialist dementia place, certainly, but that doesn't always mean nursing - depends on other medical needs.

As for the Contented Dementia book - I know more people who hate it than who find it useful. It's relevant to a relatively small selection of people with dementia (which is an umbrella term covereng several very different diseases). By all means get it from the library and see if you find it useful, but don't feel bad if you don't think it fits what you're dealing with.

It's virtually impossible to look after someone at home with advanced dementia without a team of people. I would recommend the book Contented Dementia which explains why and also gives you guidance on how to get the right level of support for your mum. Good luck OP.

She needs to go to a care home op. She needs far more support than what you and your sister can give her.

I’m so sorry OP, it sounds extremely difficult and of course it is a very emotional time.

you and your sister have done your absolute best for you mum, above and beyond what 90% of people could manage

Your sister needs to work her full time job and your mum needs a full time carer and your sister simply can’t do both. It is amazing she has lasted this long managing the two.

It’s very hard to hear but if your sister was caring for a child she would not be allowed to work full time as well, I think she needs to be careful not to put her job at risk.

One question I have is do you and your sister have power of attorney? If not, please look into this immediately.

wishing you both the very best with the care of your mum. If she was not suffering from dementia, I’m sure she would tell you both how immensely proud she is of you both. 💐

Do you/sister have power of attorney for your mother - if it's not too late get it done.

I'm also going to add to the - look at care homes. You need a nursing home that can handle dementia patients not a residential home. They won't turn her away.

Attendance allowance would be applied for in your mum's name and is the OAP equivalent of DLA for children or PIP for adults. It is to cover the additional costs of disability - not to compensate for care provided by family. (That joke is carers allowance which anyone working full time.won't qualify for. Do you work? If not you might qualify -37hrs a week or more caring for mum?). Getting the attendance allowance claim in place will be one less thing to do if residential care is the way forward anyway.

We moved my MIL into a specialist nursing home in June. It as the best thing we have done. She is settled there and happy and we aren't terrified of the phone ringing at 2am with the police telling us she's wandering again. Or she's lost in a nearby city after getting on random train.

It is expensive at 950 per week, but we can use her attendance allowance towards fees, her pensions and the proceeds of her house sale. Look for a home which offers dementia specialist care and look around loads, some were really highly rated but frankly I wouldn't have trusted them to care for rats fleas.

We were forced into respite care in a horrible place initially, MIL hugely declined in there as there was no stimulation. Her new home offers days out, although we've said no to these as they unsettle MIL much so the carers bring her a weekly costa coffee as that was her favorite treat. She also regularly has her hair and nails done, has been encouraged to take up knitting again and lots pf lovely crafts, singing, bingo and games. All in-between many cups of teas with a nice biscuit!

I have to say, Social Services were utterly useless, they are still delaying a financial assessment so we are self funding. They tried to stop us moving her from the respite place as according to them it was perfectly adequate (there was a man next door to MIL who would walk to her door and flash her) and I threatened legal action before it was taken seriously.

Once we found the right place for her it has all been positive. Difficult bit very positive.

will look into the attendance allowance. I was under the impression that we would not be able to apply as my sister works full time and earns well. I don't think she qualifies for any carers benefits.

As other have said AA is not means tested. But the other important point is that it is not for the carer (unlike carer's allowance). It is for the person receiving/in need of care. And it can be spent on anything that will help her - not just carers coming in, but incontinence pads, mobility aids, day centres, taxis, physio, fridge locks, whatever. And it continues to be paid when someone goes into residential care, if they are self funding, so is a bit of help towards fees.

Today is the best she will ever be. What are the longer term plans?
Surely your DM pre dementia absolutely wouldn't have wanted this life for you both would she?! Doing her personal care?
I wonder why your sister is so against an alternative?

Does your sister own the house? If not she might be worried she will not have anywhere to live.

It does sound as if it's becoming too difficult for your sister to care properly for your Mum.

Sadly a care home is getting likely.

There is an argument that people should go into a care home while they still have some understanding so they can get used to it and feel like it's their home. Also staff can get to know them.

Your mum needs a social care assessment and your sister needs a carers assessment.

Attendance Allowance isn't means tested, and your mum should definitely qualify.

Sorry to hear this, it’s very difficult. I’d forgotten I went through this stage with my mum, hoarding used tissues, obsessed with toilet paper. I think it was her the last realisation that she was incontinent and an attempt to do something, anything. She was beyond reasoning with at this point and unfortunately in a care home soon afterwards.

My dad is like this but immobile, we started with carers 3 x a day to come to my parents house

That lasted a year but it's very intrusive and my mom didn't want people in her house 3 x a day , she felt she was loosing her liberty.

Before Xmas we decided to put dad in a care home as it was too difficult for my mom to look after him.

Carers and care homes are expensive

Horrible to say , but do you think your sister is reluctant to put your mom into a care home as this will drain any future money that may be left to her/ you in a will ?

After having carers in the house for my mum, I've decided not to have carers for my dad because it sometimes adds more tasks to your list, requiring you to do things differently.

Regarding Attendance Allowance, it is not means-tested and is unrelated to your sister working full time. However, she would not be entitled to Carer's Allowance.

As others have suggested, I would recommend getting her checked for a UTI because it can significantly impact behaviour, especially in individuals with dementia.

I'm not sure if I can give this advice in a post, but I'll just share what helps with my dad, who has mixed dementia. Paracetamol helps calm him down, which is a practice in care homes for residents with dementia. This might be because they can't communicate their pain, and research suggests it can have a calming effect. Another option is CBD oil; we checked with his doctor first. If you decide to try it, we purchase ours from Amazon.

Each stage of dementia is incredibly tough and exhausting for everyone involved. You often find yourself constantly firefighting, making it challenging to decide what care to put in place. This is particularly true now, with the current care crisis and difficulties in recruiting for care agencies and homes. Moreover, resources that should be readily available, such as social services and memory clinics, are overstretched, leaving you feeling isolated and forced to guess at solutions.

I sincerely wish you all the best; it's a challenging journey for everyone involved.