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Advice please

Posted: Sun Oct 08, 2017 12:51 pm
by Catherine_171012
Newbe with a massively long post, sorry.

I'm really struggling and at my wit's end. My Mum has been living with me for nearly 5 years.

We adapted our garage so she would have her own space. She has early onset dementia, but still has capacity, I do have power of attorney. When she first came to us she was physically and mentally not coping, several suicide attempts and me rushing at all hours and completing a 4 hour round trip to sort things out. She has had a history of mental health and alcohol use as long as I can remember. (Doesn't drink anymore)

Physically she is slightly better, now has use of a mobility scooter to allow her freedom to go to the local shops. She occasionally attends a local church, but due to her ongoing mental health has been banned from several places, including a day care centre, local bingo and a mobility transport service. She gets angry and is always demanding, she says because of her disabilities.

She has lymphoedema, heart and kidney failure, depression and hypertension. She is able to walk to the car and around the house. Symptoms are always worse when she has an audience.

The long a short of it is that I actually don't want her here anymore. Omg I have said it and I feel awful. She is demanding on me and my children, she often wakes in the night and then panics about her health and will yell up the stairs waking everyone (she is on Zopiclone which I am sure has a massive side effect on her) she often calls 111 and then they send paramedics, always on the middle of the night.

It's effecting my whole family and we need her to go. She the money when she sold her bungalow, but it probably wouldn't be enough to buy her a house although I wondered about sheltered. She is only 69 and doesn't want to go into a home and I can understand why but it's not working for us. The whole family is so stressed, even my 10 year old doesn't like nanny anymore which is so sad.

If anyone has any advice or people in a similar situation could offer a solution I would really appreciate it.

Re: Advice please

Posted: Sun Oct 08, 2017 2:48 pm
by bowlingbun
Mum sounds impossible to live with. As she has sold her own home, I wonder if she paid for the garage conversion? Has she been giving you anything over and above her "hotel" costs, like food, eating, and lighting?
I found counselling really helpful when I had problems with my own mum, for different reasons. Ask your GP to recommend a counsellor, it will probably cost you, I'm afraid, but it might help you come to terms with your feelings about mum, and help you decide the best way forward from here. From how you describe her, it sounds unlikely she would manage to live alone.

Re: Advice please

Posted: Sun Oct 22, 2017 10:22 am
by jenny lucas
Catherine, hi - I've only just spotted your post, and I'm wondering whether you might like to repost it in either Newbies or All About Caring, as that tend to get more 'traffic' so to speak.

That said, I do understand your intense frustration. Whenever, on these boards, anyone posts to say 'I'm thinking of moving in with mum/dad or I'm thinking of moving them in with me' to make caring for them 'easier all round' there is nearly always a chorus of 'CAREFUL!!!!!!'

We always urge folk to think through INCREDIBLY carefully and, especially, to forecast the LONG TERM implications of the decision.

The trouble is, so, so often, when a parent becomes 'in need of care' (for whatever reason), we almost inevitably go through a kind of 'instinctive kneejerk' reaction......it's a strong impulse, says good things about us (ie, 'We care!'), BUT, it can be a real, real case of 'doing the WRONG thing for the RIGHT reason' - ie, our hearts are in the right place, but, but, but....it may WELL become something we regret bitterly. And it could prove wrong for our caree, not just us....

(I 'knee-jerked' catastrophically when four years ago my hitherto totally independent MIL living 400 miles away from me in her own flat phoned one morning, to say she couldn't cope with another Scottish winter....I kneejerked, rushed up to get her (??!) and took her to stay with me....I'm widowed, her only surviving son is in the USA, etc, and I was, and am, the ONLY person to 'look after her'. Well, the outcome was that she was NEVER again able to live independently - I'd assumed all I had to do was rent a flat near me so I could fetch her shopping, visit her several times a week etc....oh no.....she was developing dementia and in the end had to go into a home or else I'd have gone mad....when she was with me my entire life every every every day was spent looking after her and keeping her company. BUT, my message is, that letting her stay with me before I moved her into a care home was actually CRUEL as it gave her a taste of a lovely, lovely life - ie, living me with me and m looking after her till she died.....and then I ripped it from her and 'dumped' her in a care home. It would have been kinder to her to have moved her straight into a care home from her own flat, and she would not have known a taste of 'paradise' with me....so, so sad,. I did the WRONG thing for the RIGHT reason.....Big, big mistake.)

So, similarly, it looks as though you may well have done likewise.

That said, sometimes we just have to accept that what was workable once, eg, when your mum maybe was not as bad as she is now?, no longer is. Or, that one of the great bleak truths of caring applies - ie, what we can endure 'for a short time' is NOT what we can endure for a long time. You could have put up with your mum for a few years, but enough is enough now - you're out of compassion and tolerance (and TOTALLY understandable!)(she sounds nightmarish, sigh).

All this is simply by preamble to say I quite understand why you can't endure this any longer, and the only question now is HOW to extricate yourself. See next post!

Re: Advice please

Posted: Sun Oct 22, 2017 10:36 am
by jenny lucas
OK, how to separate your mum from you in practical terms....

First, it's great you have PoA, is this active, ie, can you use it to administer her finances, or, at least view them? If the latter, then where is the money from the sale of her bungalow? Is it still intact? I do hope so! If not, where is it and where has it gone!!!

Second, what is her income, eg, state pension, private pension etc.

As BB asks, did her money contribute to converting the garage, and is she currently 'paying her own costs', from utility bills (her share, if she doesn't have her own account for the garage - which she probably hasn't or it would accrue council tax - though maybe exempt if it's a 'granny flat' and/or her mental incapacity is such that she is exempt), to paying for her own food etc etc. (If she isn't, she should have been!)

BUT, if she did put her own money into the garage conversion (I take it she is not part owner of the entire property, to represent whatever money she put into the conversion - ie, she's not on your title deeds?), then I would say it is only fair that you and your husband/children should be prepared to 'buy her out', since it was her money that went in. UNLESS she hasn't been 'paying her way' for the last five years she's been with you (ie, food/utilities etc)(not to mention all the 'care' and the 'compensation' for the disruption she causes etc etc!).

So, really, the first step is to tot up just how much money she has, including you 'buying her out' as necessary, and then see what that will reach to.

Supported living places, eg, those blocks of flats with wardens etc etc, designed for elderly living, do tend to be expensive. Worse, they are usually 'unsellable' afterwards, BUT come with hefty 'maintenance' fees that are legally required to be paid EVEN AFTER a resident has died, and while the family are trying to sell the damn place on. Remember, they are all designed to be 'money spinners' for the DEVELOPERS and really are not 'good value for money' for the residents or their families. What everyone is 'paying for' is the warden services, and any communal services/facilities, otherwise you might as well just buy an 'ordinary' flat.

You do need to check out just how much 'warden services' and communal stuff is actually provided. Some of those places don't have a warden in residence, and just a bell pull in the flats for emergencies overnight. Check what the wardens actually provide - just to check burglars aren't wandering around, or anything more than that? Any 'care' - eg, help with getting up and dressed, preparing food, etc, usually has to be paid for separately, eg, by simply hiring care workers coming in from independent agencies (the warden usually recommends them, or it's what other residents use).

The main problem (I found all this out while I was still hoping to move my MIL into 'independent but supported living' near me) is as I say that they have to be purchased outright (either as new builds - warning on difficulty in reselling! - or from the relatives of someone who has died or moved into a nursing home or whatever), and then have to be sold on afterwards somehow to another incoming resident, but, as I say, watch out for STEEP maintenance fees that don't stop until the flat is sold!

It would really make FAR more sense for many folk to be able to RENT such places (you can't rent the purchase ones - they don't allow that!!)(like I said, they are tilted entirely in the developer's favour!), but I've not discovered those anywhere.

The next BIG problem for your mum is simply her behaviour. It's one thing to be elderly and frail, it's one thing to have dementia incipient (which of course will worsen, again, see below), BUT, the main big problem seems to be her mental health and alcohol-issues......To me, THAT is what is going to make 're-housing' her so, so difficult. Those with MH are 'the very devil' to cope with. It's infinitely easier to deal with someone who is physically very frail, rather than mentally frail. And you have already pointed out how 'unsociable' she is, in the sense of being banned from places for her bad behaviour.....

I don't know whether supported living places exist for those with MH and 'bad behaviour' but there is clearly a need for them! BUT, in the end, they would be VERY expensive....

Re: Advice please

Posted: Sun Oct 22, 2017 10:45 am
by jenny lucas
Sorry, continuing separately - got very long!

One possibility might be an Abbeyfield for her? This is what I found eventually for my MIL. It was a lovely place, and she had a ground floor 'bedsit' with a patio to the communal gardens, and lunch and dinner provided in the dining room. They were supposed to make their own breakfasts in the communal residents kitchen, but could have a kettle and fridge in the bedsit (ensuite) (no toaster, they kept setting off the fire alarms!).

She was fine there for about a year, until the dementia worsened (she kept wandering off, and it became a safeguarding issue alas). She could never manage her own breakfast, or getting showered and dressed etc, but the home's manager (fantastic guy!) sorted out a care-worker to come in daily to do that with her (lots of the residents had that extra help).

I thought it was a fantastic place and BEST OF ALL it was on a monthly rental. So NO 'committment' or upfront costs. She paid around £1500 a month, 'all found' (ie, all inclusive except for the extra careworker in the morning, something like £15 a day I recall.

BUT the problem is, even if you found such a place, I dare say your mum's mental health problems would make her 'instantly banned' as being far, far too anti-social. (Sigh)

So, what else can you do? It's actually very, very hard to think of any 'easy' solutions, simply because of your mum's appalling behaviour. If you don't want her, no one else does either!

DO care homes exist that take MH patients? As I say, there must be a huge demand for them, and one would think there is a market, at least for self-funders, if nothing else....

In a way, you could find yourself rescued by her dementia, of all things. As that worsens (and it does, inexorably) it will come to dominate everything else, and it could not only 'modify' her current MH-bad behaviour, simply because it is 'killing' her mind/brain increasingly. So her 'bad behaviour' could 'evaporate' as the dementia worsens. She could become calmer and more passive, and increasingly 'helpless'.

Also, when her dementia reaches a certain point she will lose legal capacity, and then you will be 'legally free' to take decisions FOR her, whether she likes them or not.

But that could take years still (as you say, she's very young for dementia, and presumably this is linked to alcohol intake and MH??)

Re: Advice please

Posted: Sun Oct 22, 2017 10:53 am
by jenny lucas
What do you think your mum actually WANTS? Does she want to go on living in the converted garage? I'm taking it she does, so any parting of the ways will be strongly objected to!

If she really really doesn't want to leave of her own free will, I suppose you could go down the 'eviction' route, but if she doesn't have a formal tenancy etc, it's tricky (tricky ANYWAY!). Physiclaly getting someone out of somewhere is very hard to do.

(In a way, had YOU moved in with her it's easier -as YOU have the freedom to 'walk out'!).

You could, drastically, sell up. BUT, again, how and who would physically get her out of there? Plus you'll have sold your house!

Could you book some respite care for her that she 'agrees' to, and when there, tell her she isn't coming back to you any more, and you've booked her into the care home 'indefinitely'????

Could you simply change the layout of your house so that there is NO 'communciation' between the garage and the main house, and that you sever all telephone etc etc from her? So she is 'trapped' in the garage?

What are her actual care needs, day on day? What can she do for herself? Is this something YOU are providing? If so, stop - and make her hire (or you do it for her) care workers.

Could you cope with the situation if you didn't see her everyday etc, or far less than you do? Could you minimise the time with her?

Trouble is, she doubltess has blithely NO IDEA she is the person and 'pain in the neck' that she is! Most people behaving badly don't have any feelings for anyone else at all anyway.

I'm sorry to have sounded so negative, and really, there are NO easy solutions, especially if she won't cooperate with moving out!

I suspect, in the end, residential care is the only real alternative, unless you find a supported living place that will take her with her MH issues (maybe they will??). But how 'physically' to get her O.U.T is THE major problem you are facing. Your situation is, alas, a dire warning to all who do the wrong thing for the right reason, sigh, sigh, sigh.

However, the one thing I think you can feel OK about is that yes, it IS OK to want your mum out of your 'home' and into a place of her own ,wehre YOU can determine how much, if anything, you do for her.

Bottom line, she's brought this on herself by being so anti-social - yes, MH is very sad etc etc etc, and maybe she had a horrible horrible childhood etc etc etc, but in the end, right now, YOU and your family 'come first'. You've done a LOT for her, and I think 'enough is enough'.

The only question therefore is HOW to get your home back.

It's so sad she's made herself 'unwantable'.....

Re: Advice please

Posted: Mon Oct 23, 2017 6:59 pm
by G Fraser_1612
Hi Catherine

My advice would be to go to someone who MIGHT have some influence with your mum.

As realistically, with your mum still having capacity, unless you are prepared to abandon her you are really stuck with her until her capacity comes into question. (I am assuming this has been recently been assessed i.e. within last six months?)

I am thinking local church pastor which she sometimes attends could maybe help? :idea: