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moving in with mum as full time carer - Carers UK Forum

moving in with mum as full time carer

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Hi there! I have for some years been caring for my elderly mum who has dementia. The last couple of years we have lived a few doors down from her so I can visit every night. Since early December she has been dressed and out of bed approx 8 times, not washing, drinking or eating properly. However when she has been up and dressed she seemed very good. We are however in a position where the doctor believes she has lost capacity and is asking me as person with lasting power of attorney to make some decisions on her behalf.

I have always promised her I would not put her in residential care and although she was never overly keen on me moving in she agreed that if the time came she would accept it. The problem is she has no idea that she is not looking after herself and will not acknowledge that she needs me even though I am now washing, cleaning and cooking for her. In a nut shell for her the time has not yet come and probably never will!

In order to not rock the boat I have been clearing her house of all unnecessary 'stuff' bit by bit in order for my family and I to move in ( she lives in a large house that is slowly falling apart). I can't imagine, however, how I am going to move in things like beds ect without a fight and once we are in I am terrified of her reaction to it. Having just given notice to my landlord today I feel incredibly vulnerable and wondered if anyone had advice on how to handle moving in? I still seek her approval and need to come to terms with the fact I am now the decision maker. Talking to her about the situation doesn't really work as within a couple of minutes she has forgotten the conversation and we are back to square one.

Thank you for reading x :(
Hi, and welcome to the forum. Dealing with an elderly parent with dementia is something that many people here know only to well (and frustratedly) about!

In a practical sense, does your mum own her own house, or is it rented? Do you have any siblings, or any one else who may expect to inherit it when she dies, if it is her own house? Do you know what the running costs are, and how it is currently being met? What income does your mum have? What savings?

I say this because way and above the most important question for you is What is the Financial Implication For Me If I go ahead and move into my mother's house? You MUST protect your OWN position first.

To be blunt, I would say that you do NOT move in with your mum unless she gives you half the house (and that may not be possible if she has no mental capacity). What does her current will say (does she have one)? If she has no legal capacity any more she won't be able to change her existing will, or make a new one, or make one if she hasnt' got one. If she dies intestate, her property/savings will be divided amongst living descendents in a 'set fashion' that you will not be able to challenge.

I know this sounds 'venal' but you must must must beware of rushing to move in with her, giving up your own tenancy, giving up your paid employment (are you going to do this? Does your mum need you on duty non-stop now - if she's waking in the night sounds like she does! - and even if she doesn't, she is likely to as her dementia worsens, so can you still keep working and earning - or are you on a pension now yourself, etc etc?) - and then, when your mum dies, you discover you are homeless, broke and have to start from scratch all over again......

You probably already know the rules applying to care of the elderly from a financial point of view. The state says that until an elderly persons assets/property/savings are down to the value of £23k, they must be entirely self-funding as to their care - they are entitled to no care other than what may (may!) be available via the NHS if they have actual medical needs (dementia does not count!).

Do you have power of attorney yet for her finances? I suspect if you don't she will be deemed to have insufficient capacity now to assign that to you, in which case you will have to proceed, I believe, via the more expensive Court of Protection route (I know little about this, but others here do, and of course the Carers UK experts will!).

What is essential is that you do not use YOUR money on her! She has to use her own!

Jane, moving on from all the financial stuff (which is the first thing to sort out, because, as I say, your first priority has to be protecting your own position from any decision to become your mother's carer and move into her property for an indefinite period of time)(it will probably be years.....), I would urge you to think extremely carefully before taking this step.

Have you read this forum widely, to see what the experience has been of other people who are caring for their parents with dementia? It is not a pretty picture! It MAY work in some circumstances, but for most of us it is a hard, hard 'slog', frustrating and emotionally painful, and one that has driven not a few of us to the edge of a nervous breakdown and beyond. I know that had I not put my 91 y/o MIL with dementia into a care home I was getting truly suicidal.

That is because, to be brutal, caring for someone with dementia eats your life. Your own life just ...stops.
Hiya
If you have already weighed up all the implications, financial and to your own life style which Jenny has pointed out, and have now passed the point of no return, perhaps Mum would respond well to you asking her for 'help'. You can no longer live in your own house, (for whatever reason). Please may you move in with her for the time being? Just while you get things sorted. It may be some months. In return you'll do her housework, shopping etc? Please will she help you out?
That might work rather than her thinking you are moving for her sake.
Elaine
Thank you so much for such thought out replies.
yes I have lasting power of attorney for both financial and medical. I have been dealing with her finances for some time now. I am an only child, mum owns her own home outright she has a Will and I am the only beneficary. I do not however own half the house.
I am at the moment looking after my 10 month old son, have 3 older girls (14, 12, 11)and have not returned to work but do some childminding to gain a little income. I live where I do because of mum and i am caring for her at least 35 hours a week. My husband is employed.
It costs a small fortune to rent the house (she lives in an expensive area) and mum is helping us as we are only here because of her. We own a house a few miles away which is rented out at the moment. We would be financially better off living with her as there would only be one set of bills etc.
I am finding it a real concern running between two houses, sometimes I don't see my kids until 9.30. I am having to do more and more.
My dad worked very hard to afford the family home and it was his dying wish that I have it. Mum does not want to go into care for a number of reasons but one of them is that the house would be sold and I may get nothing.
I don't think I have covered all your questions as I can't remember them I'm afraid. Is this of any help to you though?
I may try asking her for her help. She likes that kind of thing. I could tell her it's just for now. This is so difficult and such a worry
Hi again Jane,
You sound as if you have got a lot of essentials under control and certainly if you are renting your house just to be near Mum, and are spending most of your time with her anyway, I can see the sense of moving in.
I would think that it depends on the size of the house. Would you be able to have a family room to yourselves to give both Mum and you your own space? Is the house big enough that your girls can do their homework, play their music, watch their tv without having to consider Granny at every moment?
I'm sure you would be able to come up with a reason why you need Mum's help accommodation wise and hopefully, before long Mum will appreciate the family being around.
You are doing more and more now. It's only going to get worse once you move in. I suggest you seriously consider getting outside help in because eventually Mum is going to need personal care, with washing and dressing, continence problems, mobility etc. It's going to be the same as looking after the baby, but whilst the baby will grow and progress, becoming more independent and eventually go to school like his sisters, Mum will go backwards, becoming more and more needy and more and more dependent on help. The baby will learn and grow. Mum, sadly, will forget and diminish.
One person you need on your list of people to help is the Occupational Therapist. An assessment by the OT will produce aids such as grab rails, walking frames, raised toilet seats, commode, and other equipment which Mum will gradually come to rely on. Another is the continence Nurse, who will be able to provide products on prescription when Mum needs them.
I would also employ some care workers. When Mum cannot be left alone any longer and you need to get to the shops you could have a sitting service. You don't have to go through SS if Mum is self funding but if they are not already aware of Mum then it might be an idea to get her on their radar because you never know when you might need them. They are also a route to that OT.
I suggest that you move in and see how it goes. Make sure you have help, even just a cleaner to start. Also begin to research the local Nursing Homes which specialise in dementia. If Mum deteriorates so far that you can no longer cope, you might still need one. Seek advice as to whether the house would be sold if you and your family are living there. It's too late to have it signed over to you as it would still be deemed as part of Mum's assets.

All the best
Elaine
Moving in will not preserve the asset, if Mum needs care in the near future the house will be used as an asset. Even if she signed it over that would be viewed as deprivation of assets.

My advice? Don't do this. We are 10 years down the line, it has all gone badly wrong. My father is losing his memory and saying all sorts of stuff. I was sat in 2 different meetings on Tuesday in which he told people different things. He is confused and his confusion is causing me a ton of heartache and problems with the authorities.

We are bailing out but it is a bit more complicated because we do all own the house. The likelihood is they will go to a nursing/residential home together. Either that or we will vacate the house and they will have to have some super dooper care package.

We have a complaint pending with Social Services, not 48 hours later one of the people at the meeting with us put the phone down on my partner after telling him we are not their problem, my parents are, and frankly they don't care about us, words to that effect. I am waiting for a copy of several tapes from them for my Solicitor.

2 different SW did rock up here, they said they couldn't get a carer twice a day for a new client in this area that same morning. Therefore quite frankly there is no chance they will be able to increase my parents' care package here whether we stay or not. It is only going to get worse. You have a family, children and a baby, what if Mum's actions put you all at risk? My Dad started leaving the hob on for instance if he heated things up, he put dry plates in the microwave to warm them...... and killed a £150 combi Panasonic microwave. That's just for starters. Imagine a stair gate or front door left open and your little one toddles off.

Seriously, if I knew then what I know now, I would never have given up my own house and bought with them. We are and have been treated with contempt by SS for the entire time. I can't emphasise enough just how this move will affect you, your relationship with Hubs and your children.
I'm so sorry - I didn't mean to imply you had to answer all those questions I put, here! I just meant that they were questions you should address yourself, and take the answers into serious account! Apologies.

However, it does make things easier to decide about what to do, I would say, that you are the sole heir, so there are no siblings etc to make decisions about your mum's welfare more complicated.

I can definitely appreciate that you don't want the family house sold, but preserved for your self and eventually your own children to inherit in due course. BUT, and this is the big big BIG but - the point is, what price will you have to pay to inherit it? I mean in terms of your own life and well-being.

Now, if you move in with your mum, the 'ideal' scenario is that you all move in with her, she has a lovely, contented couple of years more of life, well looked after by you, cherished and cosseted by her daughter and SIL, with her grandchildren around her, in the bosom of her family ,and then, in a year or so, she passes peacefully and tranquilly away, in her own home, and you give her a lovely funeral and play her favourite songs, and then always remember her fondly and affectionately while you yourself live out your days in the family house.....

BUT, you can't guarantee it will be like that......firstly it could go on for years and years and years. One forum member took on her mum's care when the mum was 91 - so surely only for a year or two. Nearly ten years later her mum is looking to be 100..... I've got a 91 y/o MIL who is in ROBUST physical health, she never has colds, is fit as a fiddle, her bp is better than mine, BUT she is entirely helpless with dementia and needs 24x7 care and help with everything. When she was with me before I put her in a home (at the edge of a nervous breakdown) my own life just STOPPED. EVERY day was spent looking after her, entertaining her, keeping her company - the most I could do was nip out for a coffee with a friend of mine who was also 'escaping' her live-in dad with dementia.

I cannot emphasise enough that caring for someone with dementia is like having a very elderly 'toddler' to look after - and, all to often, a toddler who is very 'wilful' (because they want to do things when they want to do them), who cannot be guided, persuaded, reasoned with (they have no reason left) and who has absolutely NO IDEA that they need help in the first place (this sounds like your mum, that last, that she doesn't accept she needs help....)

If you do move in, then I'm not sure that presenting it as a 'request for her help' is that good an idea, you know. I agree it would give you a plausible 'way in' but I suspect it might set up a situation in which she has every excuse to try and get rid of you, that she sees YOU as the 'beneficiary' of your presence in HER house, since she sees no need for any care, and that she continually 'sets the rules', eg, for your children and so on.

You could try telling her 'I know you don't think you need any help yet, Mum, but the doctor says you do. He wants us to move in here to look after you.' ...... using 'The doctor says' may possibly give you an 'authority' that she respects (though she may well just say the doctor is an idiot!).

I do think it's essential that you have separate spaces, but that would probably mean, since there are a lot of you and only one of her, that it is she who has the restricted 'own' space and again, given her attitude, she may well resent that.?? If she doesn't, then that might well be your best bet. My brother did that with my own mother - they created a 'granny flat' downstairs, and she came and went well enough, sometimes eating with my bro and family, sometimes keeping to herself. She was partly 'en famille' and partly not, and was happy (delighted usually!) to play with the children and so on, and prepare vegetables for cooking, and so on - BUT she did not have dementia!!! So it was a completely different scenario.

I do think all of this is boiling down to the root question - what price are you prepared to pay (and your children with you) to retain the family house? Given that you may well have to go on paying that price for years, and years and years, affecting your children's enjoyment of their childhood, and your precious time with your husband. I can't help but think that your descriptions of how you are having to 'smuggle' furniture in and out already, and how resistant your mother is to your presence in her house, is not a good omen for any long term residence by you.

I know I'm painting a very, very negative picture of what it's like to care for a 'difficult' person with dementia, but you must, I would strongly urge, paint that 'worst case scenario' and assess just how you, and your husband and children, would cope with that.

Bottom line, is your family house worth years and years of your life? If it is, then at least go into your decision to move in with your mother with your eyes wide open, and accept that you may well end up bitterly, bitterly regretting it. Or, that you may 'call it quits' in a year or two, and end up selling the house anyway to pay for your mother's residential care in a dementia home. Though, if so, then you would, arguably, have the satisfaction of knowing that at least you'd tried to make it work, and it hadn't, and that was that.

Wishing you well, whatever decision you choose to make. The brutal truth is that caring for an elderly person with dementia is very, very expensive - either in financial terms (my MIL costs £650 a week, and is burning through the money from the sale of her flat, and I know some can cost over a thousand pounds a week!), or in terms of 'burning through their carer-childrens' lives'.......

PS - VERY glad to hear you've got your own property independently of your family home. (I guess one option might be to sell that, use that money to pay for your mum's residential care, but take ownership of the family house instead, and make that your main residence already? or would that feel like 'kicking your mum out so you can take over?')(I don't suppose the rental income from your own property would cover care home fees?!)
I am in a similar position . My dad has dementia and has just gone into a care home, I have been considering asking him to purchase a bungalow so that my teenage son, myself and my dad could all live together. He is currently paying a fortune in care fees . Would it be classed as deprivation of savings ??? I am now having second thoughts as to whether it would be fair on my son x
Elyse If Dad has dementia I don't think he would be deemed fit to purchase a bungalow by himself. If you have POA for finance and can make a case for it being in his best interests then perhaps, but I don't know.
The chances are that dad would soon be back in a Home because of his dementia and he wouldn't be able to make a will now to leave it to you, so it would have to be sold to pay for his care anyway.
Buying a property is very stressful anyway, without the complication of Dad. Then there's the problem of settling him in yet another new place which is likely to exagerate his dementia. Personally I'd be very thankful that Dad is somewhere where he can be looked after 24/7, visit as often as possible and concentrate on me and my son.
Up to you of course, that's just my opinion.
Elaine
Thanks Elaine for the advise. Dad has mild vascular dementia . I know it will become worse over time . That was o e of my concerns . It just seems so unfair that my dad saved all his working life and now the system is failing him . He made a will a few years ago . And we are in the process of sorting POA x