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

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.

@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 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.

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)

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.

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 was under the assumption that they would take family savings/income into account. I didn't realise it was only on my mums savings. She obviously has savings.

Thank you again everyone. I'll speak to the GP tomorrow and make plans for our next step to help our mum going forwards

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..

@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/