Urgent advice please

[lovelthesun247]

My mum was diagnosed with vascular dementia about six years ago. She lives with my sister and I live close by. My sister works from home full time and I work in an office with no wfh option.

During the last nine months my mum has become progressively worse. She is now unable to shower herself, she doesn't cook or tidy up after herself.

My sister does her personal care during the weekdays and I go during the weekends to give my sister a break and a lie in. On the days I go, I shower her or wash her hair, dress her, clean her room/bathroom, strip her bed and give her breakfast.

I feel bad for my sister as she does this for five days of the week compared to my weekend help. As she lives with her, she cooks dinner for them and does the cleaning. She also administers her medication as my mum used to sometimes take more than what was needed.

I have suggested we get some outside help, but she is reluctant to allow people into her home and as I don't live there, I can't force this too much.

My mum wears disposable underwear, but is obsessed with toilet roll. She asks for at least one a day (sometimes more) she will keep hounding my sister about this. She removes food from the fridge/freezer and hides it in her cupboards. This is often food that needs to be cooked in the oven and she doesn't know how to use the oven or microwave, so there is no point of her doing this. We check her wardrobes twice a day for food she might have hidden in case it goes off or in case she eats it without it being cooked and makes her ill. In the past she has used her clothes to line her underwear as she is worried that she will leak through her clothes, so now we have emptied her wardrobes of her clothes and give her a fresh set of clothes everyday to avoid her ruining them.

It seems every time we try and resolve a problem, we are faced with a new one. My sister understandably not coping and I don't know what more to suggest to help. I take my mum to appointments when I can and always invite my sister round to mine to give her a break, but this doesn't feel like it's enough.

We asked the GP to refer her for a blood test and are going to see her tomorrow. I'm not sure what I'm hoping for. Maybe an adjustment to her medication, but the situation is quite bad and I don't think just an adjustment to her medication will be enough.

Is anyone able to provide any advice to help with the situation? Thank you for reading

She needs a care home. None of you can live like this, it's not fair on anyone.

Get a continuing healthcare assessment for her.
Absolutely understandable not wanting carers in the home, but do look into care homes for respite at least.

In the short term, childproof locks on fridge and freezer? Plus a pressure sensitive pad in key doorways so your sister can intercept her?

Social Services will probably feel she can stay at home with carers, or won't try a care home until it's been demonstrated that care in the home won''t work. So if you want a care home, sister may have to say she can't provide any care any more.

Have you got attendance allowance for her? If not, do it. It's not means tested, and it will help pay for things to help keep Mum safe. When you fill in the form put in all the needs, and repeat them in every relevant section (pretend it's a different person reading each section). Needs include washing (physical and being reminded to), hairwashing, dressing (both physical help and choice of appropriate clothing), food preparation and being reminded to eat, supervision of medication, etc etc.

Sister is entitled to a carers assessment in her own right, to look at her needs, eg for respite. Whether this is worth doing depends on area.

Definitely a carers assessment for your sister.
Is your dad at home too?
Maybe some respite care as a trial so you all get a proper break?
Either a short stay in residential care or through having a package of care that will take your mum out for a few hours or even a day centre?

Went through this with my mother now sadly deceased. I think the point at which they become a danger to themselves and others is the point at which you have to admit to yourselves you can't cope anymore and look at finding somewhere where they will be safer.
Time to look at care/nursing homes I'm afraid. TBH life becomes much better for you after this, visits are pleasant rather than turning up and wondering what you're going to find when you get there and having no idea how long it's going to take to sort out the chaos. Obviously it's not a decision made lightly, but it was the best thing my dad and I ever did. Even my brother (who lived abroad and so didn't really understand the extent of what we were dealing with as the dementia developed) who was highly resistant to her going into a home, accepted quite quickly that she was thriving there and it was actually the best thing we could have done.

You need a dual assessment one for your Mum and a carer one for your sister.

A small thing you could do is child locks on the freezer and fridge.

Also if going to the GP I would ask for a test for a UTI as that can sometimes exaggerate/mimic dementia symptoms.

What blood test are you asking for and why?

I’d be asking for a social services assessment - for your mum and sister, a referral to the continence team and whether there are any dementia care advisors or nurses in the area who can provide support and advice about local day centres etc.

Ultimately it sounds as if your Mum is needing more care support than is possible at home without carers. If your sister really can’t contemplate having carers in their home then a move to a care home will be needed to meet your Mum’s needs. That’s likely to take a while though as financial assessment and assessment of needs are completed, then finding somewhere appropriate.

Good luck

Thank you all for coming back so quickly.

Just reading your advice, makes me feel some comfort and help me to see all the options. I have made notes of the suggestions and will discuss these with my sister later today.

My dad passed away 25years ago, so it's just me and my sister.

I 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.

I was reading a post where a care home refused to care for a patient and I'm worried that's what will happen to us as my mum can be so demanding, although I'm not sure if she's like this with us and would respond differently to a professional she doesn't know

Thank you all

She has been on medication for a number of years now and this has never been adjusted.
I'm not sure if an adjustment to her medication will slow down how rapidly she's declining.

Also about two months ago she was shaking quite uncontrollably and we thought she was suffering from lithium toxicity. We had a blood test and her lithium levels were very high. The doctor reduced the dosage and she needed to have another check to see if they are at the correct levels now

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.

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 ?

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.

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.

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.

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?

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.

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.

Thank you for the replies. Reading your replies has made me realise that we are not alone as that's how it feels sometimes.

To answer a few general questions, rather than answering individually.

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 think her main concern is that she has looked after her for so many years now (even prior to her dementia) and she wants to keep going, but circumstances have changed and I'm worried about the mental and physical toll it's taking on her and don't want her to have a breakdown while trying to help our mum. We will ask the doctor to test for UTI and ask about the CBD oil too.

I am also going to have a chat with my sister about moving her into a suitable home that specialises in dementia care.

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.

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. 💐

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

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.

thank you to everyone for your kind words and supportive advice.

My sister does have power of attorney and is registered as her carer with the GP so they contact her about medical appointments etc and we split the responsibility of taking her to them