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Unsure what to do - Carers UK Forum

Unsure what to do

Tell us a bit about yourself here.

I live in the south of England and my mother lives in Scotland she is 82, I am her only living relative and she is getting to the point where she needs help. We have been speaking a lot about what to do and one of the options coming up is for me to move in with her as a carer. Because she lives in a council house I have contacted a local councillor to speak to the council and the council have said the way to do this is for me to move in as her carer and notify the relevant agencies.

Over the last couple of weeks I have found out a lot as to what will happen to her benefits if I do this and am reasonably sure that she would only lose the severe disability premium of her pension credit if I claim carers allowance but as she dosent receive that its not an issue.

What im unsure of is - is it as simple as me just getting permission from the council to move in and then me saying im her carer and thats it ? When I mention she can get a care assesement from the council she clams up but I see her twice a year and speak to her daily and in the last few months have seen her get much worse and I think the best option would be perhaps just to move in and say im her carer if its that simple ?

Thanks for any help and advice in advance. David

Don't do it! This whole issue is an absolute minefield. It's OK to move in with mum, but did the council tell you that within 4 weeks of her moving out you would be made homeless?!?!

Tell us a bit more about mum and her disability and we will be able to give you a few ideas to consider. Is she especially attached to her home in Scotland?
Oh, David, it isn't simple at all! It may LOOK simple, and it may LOOK like a 'no-brainer' but it's a quagmire and even, as BB warns, a potential minefield.

OK, step back a bit.

The trouble is, when our elderly parents reach the stage where they 'can't cope' (and there is a very useful term called 'acopic which simply means 'can't cope' - doesn't spell out why, and there could be lots of reasons, but the basic point is, they can no longer manage without the help of others)....so, when they reach that stage, for whatever reasons (but see below) our 'gut instinct' as children is to rush to look after them....

BUT BUT BUT.....and this is where the warnings start.

Before taking ANY decision you MUST undertake what could be called a Complete Life Audit (CLA) - you have to look at YOUR entire current circumstances, AND your mums and MOST IMPORTANT OF ALL, you MUST look to the future!

We kneejerk to 'rush to the rescue' (I did that with my MIL!) and then only 'too late' realise we have become trapped or confined or committed to things we had absolutely no idea about beforehand. This forum is ACE at giving the 'warnings' you must heed, from those who learnt the hard way (as I did).

First - never for a second forget that 'the state' (whether that is the council, social services, the NHS), has only ONE priority these days - and that is to NOT SPEND MONEY! So, for example, when you contacted the council about moving in, then boy, David, will they have 'snapped your hand off' in eagerness to say 'yes yes yes - move in and look after her and YOU sort the problems out - hurrah hurrah!'

The 'state' is desperate to get families to 'do everything and pay everything'. NEVER forget that in your dealings with them!!!!

I'm going to post again, as don't want to overwhelm you all at one go!
The other alarming thing is mum's refusal to get outside help. That, more than anything, shows that she is in total denial about her needs. Parents forget that their "children" are now adults with their own lives to live, they cannot drop everything and dash to help mum.
Some years ago, my own mum used to drop unsubtle hints and having a "live in daughter", after I was widowed. No house would be big enough to make that work!! I had my own home, all bought and paid for, with a large garden, I worked from home, ran a national club, was disabled, I was waiting for two knee replacements, and had a son with severe learning difficulties to care for!!
Your mum has two options. Accept outside help, or move into residential care.
You being her slave for the rest of her life is NOT an option.
Does she have over £23,000 in savings? This is the tipping point between Social Services offering care, and being "self funding". Is mum claiming Attendance Allowance? You wouldn't be entitled to Carers Allowance if she wasn't.
OK - your CLAs (Complete Life Audits for you and your mum.)

These are (some of) the questions to answer - no need to tell us (though you can if you want - we are all anonymous here!) , just make sure YOU know the answer!

You first: The Present: OK, so how old are you, what do you do to earn a living/put food in your mouth, state of health ,are you married/partnered, a parent, do you rent/own, etc etc etc.
The Future: All the same questions - what do you WANT the future to bring you? ie,when you are your mum's age, how do you want your life to be.

Now your mum: Exactly the same as above, INCLUDING the future - remember, she could have twenty years left of life still!

For your mum, the most important question (other than her finances and living accommodation situation) is her state of health, physical AND mental, and how that is likely to deteriorate and how quickly.

You say she is not coping any more, but is that predominantly because she's physically frailier, or mentally frailer, or both?

I think everyone here on the forum (in the whole world in fact!) would immediately tell you that looking after someone who is physically frail (even bedbound) is VASTLY easier than someone who is mentally frail. (And mental fraility usually means dementia, though it can also mean 'mental illness' - there is one poor daughter on this forum whose mother does not have dementia, but is the most APPALLING human being, virtually psychotic in her rage and narcissm, and made her daughter's life hell on earth being so demanding and bullying!.)

Speaking bluntly, how long do you think your mum will live? (Like I say, at 82 she could easily have another twenty years)(Sad sad truth to warn you - the very elderly do not die for our convenience......)(sounds harsh, but true!) (they can go sooner than we want, or last longer than we want.....)

Once you move in with her and start looking after her, the only way you will STOP doing that is if she either dies, or goes into residential care. There is no other way. Are you prepared to do that?

Financially, it's another huge minefield. What are you giving up in terms of your own accommodation? If you move in with your mum in her council property you MUST become a tenant YOURSELF. (Insist to the council you won't look after her otherwise - remember, they are desperate not to send in care-workers, let alone pay for her fees in a care home!). If YOU can inherit her tenancy after her death, AND if she has go into a home, then YOUR accommodation is secure. Otherwise, as BB warns, the council will RUTHLESSLY kick you out (ex-carers are thrown on the scrap heap - be warned!).

Also, while you are caring - on Carer's Allowance, a pittance! (and you don't get it if you draw your state pension already!)(or when you start drawing), you are limited in what you can earn (about £120 a week - might be different in Scotland??). So your standard of living may drop considerably! If your mum worsens, and needs extra care, and as savings, she will have to pay for that herself, so you will lose any hope of inheritance!

So, bottom line, this is a HUGE and NOT SIMPLE decision, with severe consequences if you don't get it right, and the potential to 'use up' the next twenty -years of your life, possibly keeping company with someone who, if dementia is setting in, will cease to be the person you know and love now - my poor MIL with dementia (now in a home - thankfully - I got my life back....) just sits vacantly all day, and barely recognises me. She could easily last for years yet - she's 93, and physically very fit for her age, just her mind has gone completely....dreadful. (She's immobile, doesn't speak, and doubly incontinent).

In conclusion, I'm not saying 'Don't do it!' but be sure you know what you ARE doing, AND, most importantly, secure your own future (ie, council tenancy, earning potential, pension entitlement, etc) AND have an 'escape route' if it all becomes unbearable.
Again, I would echo BB's alarm at your mum's reluctance to have an assessement, or any outside carers. What she wants (very common in the elderly!) is for YOU to simply 'take over' what she can no longer do.

She hates the idea of 'outsiders' (very common!) or 'the state/council/busibodies' butting in (again, very common), and wants nothing to do with them. After all, if YOU move in and 'take over' that solves her problem, doesn't it?

IF, David, you do, after all the CLAs I urged, decide to do it, you MUST bargain FIRST with your mum. You have to tell her, right out, that you will ONLY move in IF she also accepts outside help, ie, care-workers coming in to do thigns like helping her have a bath, wash her hair, etc. Or even just to sit with her while YOU have a break (or earn money!).

It's not going to be for her - my son or outsiders - it's my son AND outsiders or just outsiders!!!!

NOW is the time to 'stand firm' and set out what you will and won't do.

Very importantly, what were your relations like with her all your life? What kind of person is she? Did she always 'call the shots' and what kind of mum was she - warm and loving, or demanding and self-focussed (etc etc).
Thanks for the helpful replies bowlingbun and jenny lucas.

On the complete life audit its something that ive been trying to convey to my mother for a while but as she is old and her understanding of things is not good that in itself is a problem considering the distance etc.

I fully understand that her local council will only be interested in the cost implications- to let you understand I went on their housing waiting list last may when I first thought that her health was getting much worse but after seeing her at christmas just past I thought things are getting critical so followed a couple of months of talking but still getting her to see the problems was an issue so about three weeks ago I contacted a local councillor to her asked him to find out what the position was regarding my moving in with her. I initially thought I would ask for joint tenancy because I am disabled myself thinking if I am on the tenancy then I can prove my address then make a claim for benefits in my own right but the council replied to the councillor that the only way they would consider my moving in is as a carer . So now im thinking no point in bidding on houses to be near her to give support because I believe the council will do the cost implication thing and say that I can always move in with her and two problems are solved for the price of one so to speak.

Personally I think the decision makes sense in so much as my health is only going to get worse and im alone. My mums health is only going to get worse and she is alone also. If something happens to either one of us then the state would step in with each of us having no one to fight in their corner. Its purely just making the best out of a bad situation thinking of the future etc.

I fully understand its not an an ideal scenario and a disabled man of 55 living with his 82 mother could be frought with all sorts of personal difficulties.

The council have said that the house would pass to me on succession so im assuming that means when she dies the tenancy passes to me but what did you mean bowlingbun about 4 weeks after she moves out ? She will be there until she dies . A friend said to me that in a situation like say I move in as a carer after getting the permission from the council. Then she takes ill and is in hospital for a long time with needs more than could be done at home, then technichaly im not caring for her and perhaps the council will get funny and move me out of the house even with me being disabled. Is that the sort of thing you meant bowlingbun ? As much as I want to do the best for my mum I also have to take every possible scenario in the equation. No point making a dire situation into a total disaster without getting as much advice possible. Thanks again David
Forgot to say I have an adapted housing association flat and my mums flat has same adaptions and is two bedrooms so id have my own space. One of my fears is that if this idea goes ahead just on my mums and mines say so with the approval of the council etc just what other "agencies " need to be involved? My mother just wont get involved with social work etc saying its not needed yet but me im a worrier and can see things that might happen that she has no control over if she just waits on things happening.

Also she receives attendance allowance and thats a qualifying benefit for someone to claim carers. At the moment what im trying to do is explain things to mum in a way she will understand and acceptable to her for example she freakes out at the word carer, but I can see she will need help v soon . So I say "mum im not talking about a care assessement from social services what im talking about mum is me living with you helping arrange things and things like that.
You've got to be tougher. You SHOULD be talking to mum about having outside carers, or else you are going to get absolutely fed up with being at her beck and call 24/7 with no respite.
Whenever anyone from the council says anything MAKE SURE you then get it confirmed in writing. There have be stories of someone from social services saying yes you can move in as carer BUT then Housing saying no that doesn't give on going tenancy. Often one from one department doesn't know how the other works.

Also, are you sure with your disabilities that you could cope with Mum physically as she declines? Many on here have to use hoists to lift their oldies and that often takes 2 people to operate. Could you lift her off the floor for example? Can you deal with her toileting as she develops incontinence?
You will definitely need the Needs (hers) and Carers (yours) assessments to see what physical and practical help is needed.

You cannot promise never to get in outside help, nor to use residential care. That is creating an unsafe sitaution that will be guilt fuelled. You can promise to make sure she gets the care she needs, and to love her. You cannot tell how well or how badly she is going to age. If it is you alone, what happens if you should get ill, or have an accident and end up in hospital yourself

Lots to think about, and do bare in mind most of us are in England and there may be different procedures etc in Scotland

Rather than rushing into a permanent move, how about spending a full week or 2 'holiday ' there to see for yourself what her current needs are?