to be terrified that my mum may have to come and live with us?

[tactum]

Ugh. Feel horrible even posting this. Thankfully still theoretical at the moment. I know she raised me and you should pay back what you get and all that, but can't really help having all these really negative thoughts about it.

OK. My mum is in her early eighties, lives on her own (dad died 15 yrs ago) about 100 miles from me. Have DB who has wife n 3 kids and DSis who is single and works FT - we all live in different cities. I work PT from home and have 2 pre-teen kids and DH. Mum's memory is deteriorating quite quickly. She is going to have a memory test in the next few weeks. Dr has already questionned if she should be living on her own.

I just know that if she can't cope on her own I am going to be the obvious choice - we have the room, I have the time. I just feel terrified of it happening though.

My DH doesn't really get on with her - nothing overwhelmingly negative, just has nothing in common, not interested in the same things etc, When she stays we can't all find things to watch on the tv, he finds her conversation boring. So when she stays he basically retreats from the lounge and does his own thing.

She asks so many inane bloody questions - clearly this will increase if she is having memory problems - which get on my nerves. She doesn't like the same food as us so I have to change what I cook when she is here. She has increasingly little to do with the kids as they aren't really at the playing games stage anymore.

I just am panicking about having to absorb her into the house on a permenant basis and what it will mean for our family. I just feel like everyone would leave me to it and our nice little family unit would splinter. It would put a huge strain on my and DH relationship. She wouldn't drive and we have no local amenities so would be reliant on me for everything. She doesn't really know anyone here apart from us, and is not very outgoing.

I like my life. I like having time to myself. I am also scared about watching her get worse and the impact that will have on us, let alone just the moving in aspect. She tried to get me to promise years ago that I would make sure she never ended up in a home and I very gently said that wasn't a promise I could make - I wasn't going to potentially ruin 4 lives for the sake of 1.

Anyone?

For a care home I believe that if they have under £23k in assets then the state will pay some of it until assets dwindle to £17k (I think) and then the state will pay for all of it. May not be the snazziest home though.

My parents already know that they won't be living with us. Homes and converting houses, have been mentioned as "jokes" over the years but everyone is aware, and agree on the fact that it really wouldn't be a good idea.

Don't do it.

Thanks marmitelover I didn't have a good childhood and have never been treated equally with babysitting etc as a grown up, but I just know 2 of my siblings will try and guilt trip me into doing more than I want to and the other sibling will try and do all she can - which will make me feel guilty seeing her doing it. BUT there is no way I am willing to put my marriage at risk, give up my own life or break us financially.

OP.....your husband and children come first.

Lots of good advice on here - YANBU in the least of course.

Do you think your mother would consider a week's stay in a care home to see if she would like it? As respite?
IME people actually surprise themselves at what a good care home can be like, they like the company, the meals that just present themselves, while still having their own room to retreat to if they want.

Just a thought.

My gran died aged 101 about 18 months ago.
My mother did her physical and mental health some serious damage looking after her (even though there were also paid carers involved) because she needed to do the 'right thing' and because my gran never made any forward plans for what her wishes were in her very old age. She just refused to contemplate that she might not always be able to look after herself and did not spend any thought on the burdens that would place on others. Keeping her in her own home came at a huge cost to others and, frankly, was rather dangerous for her as her house was utterly unsuitable to look after a very frail, non-verbal, disorientated person. But 'that is what she wanted' . It was alway felt that as she was 80/85/90/95 it could not go on forever. And of course it did not, but it went on a lot longer than was good for anybody.

Please do some active and realistic forward planning.
Only take on what you realistically can do and can sustain.
Only take on what you can do with a glad heart.

I think it is much more honest to be saying "I cannot do this" than to bow to some kind of external pressure, then hate every minute of it, spoil what time your mother may have left and have the atmosphere at home poisoned for everybody.

I think you need to sit down with your siblings and have a brutally honest conversation with them.

Have you got power of attorney? You have to do this before someone loses their mental cability of making decisions, don't leave it.

Please don't become a carer if you don't want to. And don't be blackmailed into it by siblings just because you're the convenient option. Caring for someone is a huge responsibility. It can be full on washing and dressing, hospital trips, trips to the GP, organising and dispensing medication, getting up 2-3 times a night because they're having a wander. Sometimes dementia patients can also become aggressive. It's really not just making cups of tea. It can be 24 hour nursing care.

One of my grandparents has carers in twice a day and still lives at home, there are plenty of options. Have you asked your DM what she wants?

Look at age uk and also the Red Cross.

Assisted living near you or any of you would be better unless you had room for a annexe at your house maybe your mum would prefer living on her own no kids and watch her own TV what do your brother and sister think ?

Get the memory assessment done and then see what the results are.

You don't have to have your mum live with you - but the alternative doesn't have to be a home! What about her moving into sheltered housing near you, so you can visit regularly?

Or a home?

If she's having memory problems they can get worse quickly, so it's good to have a plan and get the ball moving.

Do you have power of attorney?

My mother is nearly 90 and has been living with us for 18 months. She does not have dementia but is physically frail and needing more help. I am not sure how much longer I can manage, although she is entirely lucid, because I can't leave her for more than a few hours and the strain of helping her with so many minor things, day in day out, while running the rest of my life as well, is really beginning to be hard. If she had dementia there is no way I would be able to cope. It's not like caring for a small child, where (assuming normal development) things get easier over time. Things only get worse. My father had dementia for 8 years before he died, and there is no way I could have coped with him. As a pp said, those of us who have done/are doing it are all saying to think very, very carefully about your decision. Plan for where things will be in a few months time, not how they are now. Could you cope then?
Sorry you have to face this :(

PinkPoppy I think if the OPs DM's memory is declining fast, then her GP would question whether it was safe for her to be on her own. My neighbour was always leaving her gas hob on and totally forgetting about it, left electric blanket on all night (it wasn't the type it's ok to do that with), invited doorstep callers in etc. Forgetfulness can take sudden downward leaps, level off for a while and then dip down a bit more, quite quickly from what's I've seen. My neighbour definitely was not safe home alone, even though she was pretty on the ball most of the time. Some of the things she forgot were incredibly dangerous.

I think now is a good time to start fact finding and getting as much info together about what care is most suitable and available where your DM lives. It's best to have options and a plan in place if possible, while things aren't at a criticial level, rather than trying to sort something out in a total panic in an emergency I think.

If someone has dementia then caring for them in your home with your family is not something to be undertaken unless it's something both sides really want to do and are committed to. It's relentless and can be distressing, often just not practical in the long term and will really take its toll on everyone.

I also can't imagine a scenario where i sit down with her and say 'sorry, I'm not up for it'

But surely there's no need to put it quite like that? Why not talk instead about all the (much better) options which exist, and if by any chance she asks outright, simply say it's not an option for you

One thing I'd caution against is lengthy explanations about exactly why it wouldn't work, as she'll probably insist that "oh no, it will be fine really" leaving you in difficulties. Best, perhaps, to avoid raising false expectations in the first place?

My mum went through this stage and while she is still able to potter about but unable to live independently sheltered accommodation is a fantastic solution.
It's basically an apartment block with self contained flats and a communal area for socialising. (In my mums place they had parties, bingo, coffee mornings and the odd event) residents are still to a large extent living independently but there is a warden who checks they're ok every now and then and is on hand if there are any problems. As she deteriorates you will be able to get additional support. With my mum I arranged meals on wheels (making sure people with memory problems eat a good meal is important) and later when she had problems with mobility I had a carer go in once a day to help her take her tablets and get washed and dressed.
She lived a very happy and independent life like this for 10 years before her health deteriorated to a point where she had to move to a care home earlier this year. However over those 10 years I had plenty of time to gently persuade her that a care home would be the best place for her when the time came and given how poorly she is now I know that she is receiving far better care there than I could ever have given her.

Sorry I woffled on a bit but I just wanted you to know that it's not just a choice between care home and living without support, there are varying levels of assistance available depending on individual needs.

We have a carer go in every morning, splitting costs with three sons. Mil is incredibly independent and still in her own home. I think the next stage would be sheltered accommodation, but that'll be a battle for the future. No way would I or could I have an elderly relative living with me, I just couldn't cope, plus I'm out the house 7.30-6.30.

Look into a visiting carer, OP. This way, you get to split costs and responsibilities with your sibs and your DM gets to retain dignity and independence for as long as possible.

A few points from someone who works in older peoples' social care:

It's really not very helpful (or true) to say to you that if a GP thinks she needs to be in a home then she does. IME many GPs know very little about social care options and seem to think that anyone not 100% self-caring should be in a care home. Extra care sheltered housing [local to her or to you] can be the best of both worlds, but get advice first.

Also untrue to say that social services 'don't care' if you are looking after someone full time. 75% of our business is helping people living with relatives or whose relatives give some support. No, we can't solve every issue and yes you might have to wait until the emergencies are dealt with before we can see you, but certainly we do the utmost to listen to family carers and try to support if we can.

On the money issue and care homes - over £23.25K capital she pays the whole cost [and the whole cost of any social care in her own home], under 23.25K council funds some, rest comes from the person's income f they have no other assets, a bit comes from health if you are in nursing not resi care - all comes from health if they meet continuing health care criteria (difficult). If she has a house she no longer needs to live in, or other property, it can be sold to fund the care once she's below threshold, or you can ask if a deferred payment scheme is available for her:

www.moneyadviceservice.org.uk/en/articles/deferred-payment-agreements-for-long-term-care

And I can only repeat what another has said: what are her plans? She gets to be the boss of her, and likewise you of you, so if you know it isn't going to work, there is no point for anyone trying it.

Thank you all so much for taking your time to share your experiences, knowledge and thoughts. I appreciate it so much.

I am going to read all your posts again in the morning and make notes of things to look into etc. Its all very useful stuff.

We do have power of attorney in place - did that a few years ago in light of another family member getting dementia and things not being in place.

I am going to spend the next few weeks getting up to speed on options so we are all more informed. When we get the results of the memory test we'll know what we are dealing with and can talk to mum n each other.

Thank you all again so much - I really appreciate all your generosity and support. Apart from anything I feel less of a complete cow than I have been doing. I was honestly expecting a fair few 'suck it up - shit happens' replies.

I have found a care agency to visit my elderly mum. They specialise in memory loss and they can do as many hours as you need. Her carer can take her out and about and even bring her to me for the day. It costs, but we have taken equity out of the house to pay for it. This might work for you?

There is an Elderly Parents section of MN with a long running support thread that you might want to check out. Those of us who use it find it massively helpful to be able to talk to others in the same boat

My MIL has a live in carer and other carers visit 4 times a day. Admittedly, sFIL is paying, and he's frail and needs help himself. He's a rich old guy and can afford it, and they're living in a house worth at least a million in one of the most expensive and exclusive parts of Sussex. However, we know that Adult Social Care would have helped them enormously if hadn't been a rich git. They are hugely involved as it is, and have been instrumental in getting MIl the level of care she needs.

My Fil has hinted that he wants to come and live with us. Over my dead body am I having him here in my home on a permanent basis. Once a week for dinner is about all I can stand. Loooong story.

Remember too that if you're having conversations with your siblings, if you feel that you're 'the obvious choice' and you think that they might think that too, make sure you've got plenty of comebacks and information for when you're talking with them about your mum and where she'll end up.

So if one of them says something along the lines of 'obviously dmum should move in with Tactum, you've got space and time and she likes you' then be prepared to make sure that they realise it's not just a case of having space and time. It's a huge life commitment that would require huge sacrifices from your family and could easily cost you your marriage, which is something that you're not prepared to do. So obviously the obvious thing would be for them to have your dmum...' - making them think about why they don't want to have your mum because it's obviously not going to work if she comes to you will make them stop and think - because it's great for them if they think that your mum will come to live with you, they'll be happy she's not in a home and and that she's not with them - and they'll manage to rationalise it that they have a good reason for her not to be with them but that it's fine for you to have her and then that will turn into it being 'your' fault that she has to go into a home, them conveniently forgetting that it wouldn't have worked for them either.

If you're able to control the conversation, start it along the lines of 'we need to talk about what's going to happen - carers/care home/etc and just don't mention you as an option. If your mum or your siblings suggest it, then say well it's obviously not going to work for you for your mum to come and live with you, db, dsis, would it work for them and dmum if mum came to live with them? If they say yes - then fine. If they say no - then fine too - all three of you have said no, and just return the conversation to the original options discussed.

hopefully that makes sense!

I know she raised me and you should pay back what you get and all that

Or another way of looking at would be: she raised her children and now you are an adult it is your turn to raise your children.

Having to share their needs with a dementia-ridden elderly relative who will monopolise your time will have an effect on your children.

From the ages of 7-13, my childhood was utterly dictated by the needs of my nan who was being cared for primarily by my mum. As selfish as it sounds now, I remember being resentful that between work and my nan, my mum had little time or energy for us. The day she went into a home was one of the happiest (not in a gleeful way, more a sense of relief) of my childhood.

In retrospect I can see my mum was exhausted and on the point of breakdown, trying to keep my Nan out of home. Due to her condition (Alzheimers) she was aggressive (to the point of violence) doubly incontinent, prone to wandering and dependent on others for nearly every single task.

I can only assume that the 'I would never put my mother/father in a home' brigade have never encountered the reality of looking after some one who takes up so much of your time and drains you of every ounce of energy you posses.

You are not obliged to do anything you don't want to do. In my mum's case there was considerable pressure from others in the family to keep my nan out of a home so their inherentence wasn't compromised and it took a great deal of guts to say to them 'Enough, I can't do it any more.'

What do your siblings say? Have you all sat down to discuss it?

The 'don't put me in a care home' must be a generational thing. My mother had always said this, but like OPs mother, she succumbed to dementia, and we quickly realised that none of us children could look after her. I - on the other hand- would not want to live with my kids if I am in that position.

Looking after someone with dementia is 24 hours a day, 7 days a week. No time off for sickness. You cannot leave them unattended (turn the gas on/leave door unlocked etc). You toddler proof your home but for an adult.

Sheltered accom is electricity only, has secure doors. The one we found for my mother had a bank of carers who came in to see all of the residents at breakfast, lunch and dinner.

Don't kill yourself and your marriage. People with dementia are (in my experience) increasingly frustrating, damned hard work physically and mentally exhausting. I take my hat off to carers- but they can at least go home at the end of a shift.

(My mother was due to go into a nursing home, but she died as plans were being made)

The 'don't put me in a care home' must be a generational thing

Yes, i think it might be. My grandparents lived with their parents until they married (and in one case for ten years after) and lived in the same council house a few minutes down the road from where they were born. Moving to a communal living setting and being looked after by non-kin would be something completely alien to them.

As many of our generation have done, I've lived in shared houses and flats and moved on a regular basis. I suppose the one upside of rising property prices is that 'going into a home' does hold any fear.

I think it is a generational thing. I am certainly going into a care home if I can't cope- I want my children to be free to have a life. I can't I imagine anything worse than having to have them bath me, take me to the toilet etc.

I can't really share what I'd do because I don't know and I'm no where near that stage yet (touch wood that nothing happens within the next 10 years or so). We may have DBIL living with us in the future but with my ILs being so your it shouldn't happen for a while.

Don't do something you all wouldn't be happy with just because others expect it. If you're not going to be happy, your DM probably won't be either, with or without the memory loss. You and your siblings should really discuss the options together with your DM to find the best option for all.

Would home care be an option to avoid a big move? Is private residential care something you could considered?

It's a tough one because you want to help your DM but making everyone's lives a misery isn't going to do that. Your NBU to be worried and scared about this but now is the time to discuss all this like adults with your siblings and partners involved.