Yep dementia is looking likely. I dont feel right leaving her alone for more than about an hour at most but oh how I crave some quality time out!!!
Will invite friends round more. Need to tidy the spare room and make it a sitting area where I can socialise.
Ahhhhh.
How come it isnt illegal for carers to work 24/7 or even 12/7 without time off and with only 62,70 a week???
All down to " Carers " having NO rights as enjoyed by … say … workers out there.
There is one Right … care until you are too ill to care anymore … and / or your death , or your caree’s death , whichever comes sooner.
Brutual but … factually correct.
A serviant army of close to 8 million … how fortunate for the System that takes our contribution for granted.
No voice of our own , just chains to our caree as the System so dictates.
Lets put this into perspective.
Imagine mum didn’t have you around.
Social Service would provide at most four carers a day. No more than 2 hours altogether. Alone for about 22 hours a day.
Get up and breakfast/ lunch/ dinner/change and bed. Gaps of at least 4 hours, often longer. Mum wouldn’t like it, but that’s what she would get.
So however much she doesn’t like you going out, the alternative for her would be far, far worse.
I think, though, BB, that the mum is getting past the point of understanding your final point - she can’t take on board that if she doesn’t let her daughter ‘escape’ sometimes, she will ‘end up’ without the daughter, with only care-workers or in residential care etc etc.
Jacqueline, I think you have to sit down and have a real thinkthrough of what is going to happen in the future. Five years ago I ‘took on’ my MIL…the first year was the most difficult as I took a long while to realise dementia really had got going, and that any kind of ‘home alone’ was impossible. She HAD to ‘go into care’ (or have me look after her).
There are two linked aspects to the decisions you will have to make ‘for the future’.
One is - how much money does your mum have? If she owns her own house/flat, it will have to be sold to pay for residential care.
Second is - do you want to inherit anything from her?
If you do, then you can’t ‘put her in a home’ at all (ie, if she owns her house/flat and you want to inherit it) AT ALL. ie, you have to tough it out - at least until you are 60 (when, if you are living with her - and you don’t own another property yourself?? - the council can’t force it to be sold to pay for her residential care).
Do be grimly aware that caring for someone with DEEP dementia ‘at home’ is extremely difficult - she will, grimly, become doubly incontinent, stop speaking, have to be spoon fed all her food (very very slowy), and can take years to die of dementia (the average lifespan post diagnosis is something like 8 years!).
So many of us ‘start off caring’ never thinking that ‘residential care’ is going to be necessary. We blithely think ‘oh, they will die in their sleep one night’ or ‘they will have a stroke/heart attack and go out like a light’…believe me, that does not often happen…
Caring to the end is a long, long haul. A marathon. It will cost you years of your own life. It’s really important to understand this, and to make a decision as to what you want your life to be like in these ‘pre-death’ years for your mum.
It’s desperately sad, and very depressing, but there it is.
The change in role is so difficult, I hate the term “Elderly Toddler” but that is the easiest way of describing someone who wants to be in total control 24/7, and has tantrums whilst not getting their own way, but on the other hand needs someone else to do all the normal things in daily life for them.
So we have to make “best interest” decisions as a parent would, because the “child” cannot make rational reasoned decisions themselves.
It is the carer who has to decide, and thinking about what would happen to mum when the carer isn’t there is tough. Hence my comment about what Social Services would see as OK if there was no relative involved. The caree might not understand, but it might help alleviate the “guilt” of going out.
There is so much to take into account. Mother is not yet at the end of her savings ie not yet below 23,250.
She has 2 carers 4 times a day.
She owns her house.
I live with her and have nowhere of my own. I am under 60 and hope to inherit the house one day.
Mother calls help when she wants to get off the bed (to go to the loo or to her chair). She forgets that I cant help her with this and that she needs to wait for her carers with the hoist.
She is feeling sad these last few days because she hates being hoisted and washed etc.
She has gone off her food.
We have had work done on the house to help when we do have to sell and because it needed doing. I love this house but realise that should Mothers care needs increase we may have to sell up to pay for a home. Not a cheerful prospect.
How far off sixty are you?
If it’s only a few years, then it might be financially prudent to ‘tough it out’ until then, and then your mum’s house is ‘safe to inherit’.
Be VERY careful about selling it AT ALL, even with your mum not in residential care. Councils are DESPERATE to avoid paying for care, especially residential care, and will ‘swoop’ if they see a house sold and turned (even momentarily!) into cash!!!
Wise words Jenny!
Hang on to the house hun - its a hard road but remember, this is YOUR future in those bricks and mortar and as Jenny rightly says, if you downscale and have money in your mum’s bank - that could be swallowed up in care. Good luck x
I am definately not intending to sell the house until after my Mother has died. Neither of us want the hassle of moving.
I am 58. I know I need to tough it out for a couple of years but no time off is very very stressful.
My mother understand that ofcourse I need time off but I worry about how she will cope on her own.
Round in circles. There is no right answer.
At 58, as you say, you only have two years to go, so that is good.
It could be that it could well be worth doing something like taking out a (smallish!) mortgage on her property (it’s increasingly easy for the elderly to get mortgages that effectively will ‘see them out’…it’s far safer than equity release by the way), in order to give you funds NOW to pay for ‘extra care’ (ie, over and above what she might be able to afford as is) that will give YOU the breaks you DESPERATELY need now.
By spending some more on care NOW, you can ‘eke out’ the next two years without going insane with stress yourself, and STILL have ‘most’ of the value of the house safeguarded to inherit when you turn 60, after which your mum is ‘free’ (literally!) to go into residential care, if it comes to that, without the house having to be sold to pay for it.
But one thing is clear, you MUST have more breaks, or YOU will break. And if that means spending more money now to have sitters with her so you can claw back enough of your own life to stay sane, well, so be it.
Sorry if I’m repeating this, thought I had posted but it seems to have disappeared.
As Mum is self funding currently, there is nothing stopping you (actually her) spending some of her money on respite care while you have a break. If a residential home for a week or 2 is not suitable for her, then you buy in extra care to cover you. Whether that’s live in so you can have a few days away, or just a regular time each week, (whatever you want really) you need the break (s).
It’s her money spent on her care, so isn’t ‘deprivation of assets’
That is a really good point Mra Average. I would rather pay someone to be here as it would be less disruptive for Mother.
She has been more cheerful today and eaten better. I even went into town for a couple of hours with no issues!
This forum is so helpful.
A friend of mine with her dad-with-dementia living with her used to get her breaks by hiring a private carer to do what she did (well, some of it!) while she ‘escaped’.
It was a local care company, and the cost was something like £120 a day - not cheap, but it was a ‘life-saver’ for her.
I’m glad your mum’s had a good day - things can be very variable, can’t they?
Life saving is what it is all about. 120 a day is a lot but we will soon (wellMother will soon) be spending over 800 per week on care so I may as well use some of it for me whilst we still have it!
Just remember to word it that it is care for her, not a break for you, just in case SS try to be difficult in future. Should be easily proved with receipts from an agency
Think how much she’d be paying if you weren’t so available e.g living hundreds of miles away. She’d be paying out a fortune
There are also voluntary agencies/charitys that will provide a sitter to give you a break, never used them myself , I think it’s called Crossroads in my area.
They won’t do care but chat, play chess, cards etc, gives an unpaid carer chance to go out shopping, doctors etc.
If mum currently has over £23,000 in the bank then mum should be paying carers (and that includes you!) for the care they provide. Especially if she is only just over. It’s always far better for people who own their homes to have everything provided at home as long as possible. My mum had a girl to do the odd jobs and ironing, and a gardener. All perfectly allowable, not classed as “deprivation of capital”. Anything to do with house maintenance is also allowable, new carpets, new things to make mum’s life better at home.
However, do you have Power of Attorney to arrange these things? If not, would mum agree to them? This can often be the sticking point. One of our relatives just wouldn’t listen and lived in a house that was like a fridge, wearing thick ankle length “long johns” in winter, rather than use his money that he was saving for a rainy day, when he died at 87!
Would your mum agree to go into respite care for a week (fortnight?!) in a nearby care home (costs will be at least £100 a day), while you either have a holiday of your own, or maybe just a ‘staycation’?
A good care home is like a ‘hotel for old folk’! My MIL was in a lovely one that really was like being on holiday - lovely food and a programme of afternoon entertainment daily. 
The mother a relative had a fall and was discharged to a nursing home for a week (on the NHS), and was ‘pampered to her heart’s content’ - she had a LOVELY time!!!