Yet another mother conundrum - advice and help needed

[CB100]

I care for my mother who has Alzheimer's. I keep her relatively independent at this stage despite all of her problems, challenges and some really hard times. When I say independent I mean she can believe that she is independent. My father is in a nursing home as he has a spinal injury, secondary cancer and now some short term memory loss and confusion. I visit him every other day.

So my problem - well amongst many things my mother has become a selfish narcissist with not a care for anyone or anything other than herself. She lies persistently and has become so self centred it beggars belief. Last year to give me a break (first one in two years since my father had his accident) her sister took her to Scarborough for 3 days. This year her sister doesn't want to do this as she did not enjoy it.... My mother is adamant that she needs a holiday (picks self up from sad, hopeless and exhausted laughing) and has pounced on the only person who will agree to go away with her. They plan a week in Scarborough at the end of August, I only found out as I saw a note with the hotel telephone number on it. Sounds great doesn't it but I don't think it is.

The person she is going away with is a chap who has been widowed for about 10 years and who used to be part of a four playing bridge with my parents. They did not really know him or his wife well it was just a bridge thing and occasional dinner. We know little of his background etc etc only what he chooses to tell us and his is a great romancer. Over the years he has been a terrible flirt with my mother which used to upset my father and sadly since his wife died he has fallen foul of alcohol and become an alcoholic. A year ago he lost his driving licence due to drink drive and thank goodness he did since I regularly saw him get behind the wheel of his car absolutely inebriated. He is short of money so no doubt mother has said she will pay for the weeks holiday. We are not short of money but we do need to be careful since if she ends up in care we will have to fund it fully.

This chap does not know/will not accept that my mother has Alzheimer's. She is a brilliant social/doctors surgery show artist! But trust me she has weird and big problems from flushing food and clothes down the toilet to not remembering what she did 5 mins ago.

So what are my problems with it - well firstly I do not think it is safe for her to go away with someone like him. Fair enough if it was with a girlfriend who understood her illness and could discuss the pro's and cons with me before booking or perhaps even with a small group as long as they were people understanding of dementia etc etc.

Secondly, I absolutely do not think it is morally right for her to go away with a chap! My father is stuck in a nursing home with no prospect of every returning home. He longs to come home but his health issues (and my mothers) mean this is impossible. He worked every hour god sent to build and create a beautiful home and life for my mother and it is devastating that he cannot be a part of his own home.

My mother's view is that he won't know and that she can see nothing wrong with going away with this chap. She has made the assumption that I will care for her ancient dog whilst she is away and that I don't have any plans (I don't mind but that's not the point) and did not discuss the concept with me before it became a definite! She assumes that I will lie for her to my father (I have never lied to him and trust me there have been and continue to be some very hard and painful conversations to have with him about his health and future.) Oh I could go on and on but in short I think it is disgraceful and wrong for her to go away with this chap.

I have told her I don't think its right but she doesn't give a toss about what I think. Mrs Alzheimer's will do as she wishes.

I really don't know what to do next I think she is at risk going away with him and I don't think its right but heck who do I turn to for help? Her sister thinks it's a great idea since it gets her off the hook. Her other sister thinks its despicable but my mother wouldn't listen to her since she hates her because she doesn't always agree with her!

I am feeling desperate and alone on this - it is a terrible time with my mum she criticises me to everyone, treats me like a servant and generally couldn't give a toss about me. In the meantime I have given up my career and indeed my life to look after her now my father isn't able to. I actually feel like I am just a centimetre away from moving away and abandoning her. Views, thoughts, recommendations would be appreciated.

 

[Beate]

Do you believe your mother still has mental capacity to make decisions like this? Then, whatever you think about her morals, she can do as she pleases. If you don't think she has, you should try to keep her safe of course. You could contact Social Services Adult Safeguarding and say you are concerned about her safety.

Incidentally, telling untruths and becoming self-centred is very much part and parcel of dementia. It's not her, it's the illness so try to be a bit more understanding. Also, as much as you abhor lies, in the world of dementia, some "love lies" are the kind thing to do. Why should your father, who you say has memory loss and confusion, be subjected to "hard and painful conversations about his future"? Is that going to help him?

 

[Chemmy]

Goodness, that's quite a dilemma.

My first thoughts are that you should trust your instincts. He does sound rather unsavoury.

Do you think your mum would be regarded as still have 'capacity' to make these decisions? If so, I can't see how you can stop her, other than refusing to assist in the organisation.

Do you have a LPA? Could you (should you?) limit access to funds for this jolly?

 

[CB100]

Gosh hard to answer

Does my mother have capacity - my honest view is no she doesn't. Has she been declared as not having the capacity to make decisions not officially because I have never forced the issue. Do I think she would have made a decision like this before AD - no she wouldn't have. I have wondered about the safeguarding side and perhaps chatting to social services about it but what could they do.

I have LPA for both health and finances but I really don't think it would be right to hold back the money for the trip - it is hers.

I do understand the symptoms of AD and yes much of what I see is not my mother it is the disease though a lot of the challenges come from an exaggeration of her previous personality traits. I certainly don't lack empathy or sympathy for her and I work my butt off making sure she is comfortable and as independent as possible. To be honest though she has been so vile to me I actually do not like the person she is now at all and I can't change that.

It has occurred to me that I am meeting with the team leader of the dementia group she attends each week soon and perhaps I can seek his advice. Though I suspect it is just a conundrum that I can do nothing about.

With regards to the observations about my father - though we had a rocky ride together back in 2014 when his problems started we are extremely close and have been joined at the hip since the start. His mental health is far better than it was post having sepsis and opiate poisoning! He has explicitly asked me to be honest with him throughout and I can assure you it has not been without sleepless nights wondering about the possibility of "love lies." He is extraordinarily intelligent and often appears to be triangulating information. On the odd occasion I have glossed over things he immediately recognises my attempts to evade subjects and perseveres with his questioning. To be sure if I tell him that he may one day come home - he will hold that thought.

As you can see I am just talking myself in circles here! Maybe I should just say to heck with it and ignore what she does. I am no natural born carer I am afraid - I am kind, I am a fighter for those that I love but a slave to this I am finding extremely difficult! I feel like a prisoner and totally unable to prevent her walking into trouble and doing something really stupid.

 

[Beate]

Thanks for the clarifications. If you have LPA and you believe she has lost capacity then it is your duty to act in her best interests to keep her safe. You have every right to tell her she can't go and limit her access to her money. It shouldn't be about morals though I understand why you are agonising about it, but purely about her safety, both financially and health wise. It would be ludicrous to send her off with someone who doesn't understand or even acknowledge her condition. As an attorney who has her best interests at heart, you might have to put your foot down on this one. You don't want her to come to harm, do you?

 

[fizzie]

Please don't abandon her, she needs you now more than ever (my mum was obnoxious a lot of the time but she needed me desperately) - but do get some more help. Just reading between the lines you really do need to have some extra help I think. You are exhausted with no back up and caring for two people - no wonder you feel fragile.
I think from everything that you have said she doesn't have capacity so personally I would cancel the hotel booking, hide any tickets or transport arrangements, tell her the doctor says she can't travel at the moment - whatever lies you need. Then I would pick up phone to him and warn him off and tell him that if he does even attempt to travel or see her again you will call the Police, the mafia or anyone else who will call a halt to this. Then i would block his number on the phone and tell her he had died. Not that i'm extreme lol. You could chose any combination of these or none at all. Trust your instincts and get rid of the toerag. Keep posting.
Have you had a carers assessment to get you some free carers hours, you need to get some time, however little, for yourself and see some friends. Have you been to your local carers cafe (I do bat on about this but it was my lifeline when things were rough because the people there just understood), if you can google it then I'd advise you to take a deep breath and go and have a coffee at the carers cafe.
Thinking of you x

 

[CB100]

Would it make sense

Would it make sense if i said I am scared to do this Beate! Scared of what I don't know. I am equally scared for her if I don't. She has always played a very dominant role in my life and perhaps I just can't get over that.

I just feel like I am being judged all the time because she has kept her condition secret from most and her only conversation with them is "daughter bashing." She really is amazing at acting normal and perfect when she sees her friends. She oos and ahhs at things they say and spends the rest of her time criticising me telling them how dreadful I am. I know this is AD but unfortunately other than the couple who have kept me up to date with what goes on the rest simply believe her and poo poo the idea that there is anything wrong with her.

Meanwhile at home she lives in a flurry of chaos and really sad behaviour. I quietly trot along behind (and ahead) smoothing things out, covering up the behaviour and chaos.

Surely, I can't be the only person in the world who has a dementia parent who will not accept that there is anything wrong with them and who believes that they are perfect and right all the time?

 

[Beate]

LOL, fizzie. If you don't want to act like the Mafia yourself, I believe the Safeguarding team could open an investigation and try to make him understand how vulnerable she is and that he cannot take her on holiday without the attorney's approval. But in the meantime, take the credit card and cheque book away.

P.S. to say I understand your reluctance but with the role of attorney you took on certain responsibilities, so try to get Social Services on your side - it's not like they have never heard of people with dementia who are convinced that they are absolutely fine!

 

[fizzie]

Would it make sense if i said I am scared to do this Beate! Scared of what I don't know. I am equally scared for her if I don't. She has always played a very dominant role in my life and perhaps I just can't get over that.

I just feel like I am being judged all the time because she has kept her condition secret from most and her only conversation with them is "daughter bashing." She really is amazing at acting normal and perfect when she sees her friends. She oos and ahhs at things they say and spends the rest of her time criticising me telling them how dreadful I am. I know this is AD but unfortunately other than the couple who have kept me up to date with what goes on the rest simply believe her and poo poo the idea that there is anything wrong with her.

Meanwhile at home she lives in a flurry of chaos and really sad behaviour. I quietly trot along behind (and ahead) smoothing things out, covering up the behaviour and chaos.

Surely, I can't be the only person in the world who has a dementia parent who will not accept that there is anything wrong with them and who believes that they are perfect and right all the time?

This was so my Mum. She told the whole town how awful I was and the bank that i was stealing her money (never touched a single penny, in fact she cost me a fortune and i ended up doing two jobs to cope). It all began to slip and then she would say things like, my daughter is so terrible, she comes to my house and cuts my grass in my 120 foot garden without telling me and booking an appointment - and gradually people realised that there was something not quite right!!!!!!

I used to go round apologising and then one day I suddenly realised that I had to take control to save her from herself and like Beate said I removed the card and the cheque book, when i realised that the hired help was ripping her off to tune of over a hundred pounds a week, that merited a phone call and a threat to phone the Police and we never saw him again - such a surprise. .. she didn't notice the card had gone and I would help her write cheques and then squirrel away the cheque book. Actually taking control was probably one of the kindest things I did, I didn't do it with any kind of row or confrontation, just slipped things away gradually and replaced them with support. It was hard but it kept her independent in her own eyes until she died.

 

[CB100]

Fizzie

Fizzie I just saw your comment and laughed so hard for the first time in weeks. I think the mafia is a brilliant idea I always thought it would be quite a glamorous role to be a gangsters moll and now I have even more reason to become one!

Unfortunately, financially we don't qualify for any free carer help but I do pay for a few hours a week of private carers to come in and they take over some of the things that cause such conflict like weekly bath and hair washing - if she had her way she would never wash again. I use her attendance allowance and personal top up to do this.

I am tired but I think it is the emotional exhaustion - we seem to lurch from one crisis to the next. In March just some of the petty things included turning the freezer off 7 times (switch now taped up), she had hysteria and temper tantrums over supposedly broken TV almost every other day, there has been "hair washing gate" and the blocked drain twice from inappropriate things being flushed. Oh then we had the "I have no clothes" - true she had thrown them all away bar two pairs of trousers - I have no idea where they have gone and Ive hunted high and low. Refusal to eat is also now a feature. To top it all we also now have mice but we don't just have mice we have dead mice and traps that vanish - apparently the mice drag themselves off, release themselves from the traps and then come back to die.

Fizzie I like your use of the word obnoxious - it fits my mother very well.

The amazing thing is I can drop her off at her bridge club each week and she can do that allegedly with skill for the afternoon.

I should try the carers cafe or meeting spot. I've had one conversation with the carers support people she was an empathetic lady and very kind but then I had to go in for surgery and was out of action for a while (other than caring) so I didn't get round to calling her back. I should.

 

[CB100]

Thank you

Thank you for your support tonight - I am going to come up with a 10 point action plan tomorrow and then get on with it. You are right I can't mess around on this anymore I do need to act for her safety. It will cause horrendous conflict but better that than goodness only knows what.

Right off to bed now to try and get a little kip before the next nightly crisis starts!

 

[fizzie]

A carers assessment for you entitles you to free hours - you just phone the adult social care duty desk and tell them you need a carers assessment.

My mum did bridge too - oh these two sound like twins - and I found it difficult to believe but one day the letter came saying she couldn't go anymore. i think you will find that they support her hugely at the Club which is great but don't be fooled!

I managed to persuade my Ma to go to the lunch club - it was one of the best things I did. Actually I forced the issue - i had to be very very determined. She was picked up by transport 3 x a week and as she deteriorated it became second home. NEVER would i have believed she would sit through a bingo session (no she didn't actually play) but she sat through it and enjoyed the company of the other ladies. We are lucky we have a 'social centre' with a lunch club but Age UK run lunch clubs and Social Services too but she might not go for that at the moment. We also had a group start up for people with dementia early to mid stage - a whole day run by a drama therapist who did all sorts, it was brilliant. If you go to your carers cafe you will find all sorts of possibilities. My advice would be a carers assessment to get you some hours, a lunch club of some kind to give you some free time, a dose of the carers cafe every month at least and most definitely put your foot down over this trip.

My Ma did the broken TV routine - we managed to get over it by setting it to her favourite programmes on automatic or if we were around and about the old films/musicals on DVD are often appreciated and give you a couple of hours break. The next nightmare might be phone lol. Just keep posting, lots of us have been there and have quite practical solutions to seemingly impossible antics

I'm sure you are exhausted and you certainly need some breaks so that you can carry on caring, and she needs to be somewhere safe (with no money lol). keep posting xxxx lots of support here. Just to cheer you up, my mum kept up the routine of dreadful daughter to the end she used to say to the carer 'has SHE gone, quick get rid of her, SHE is such a nuisance' etc etc. The carers thought it was VERY funny and in the end so did I !!!

 

[TrixieB]

Fizzle is so right and you definitely need to keep posting for advice. My mother is exactly the same and absolutely detests me at times, miscalling me to everyone and their uncle. The staff assure me that it's typical for AP's to act in this way and that they always spurn the ones who have done the most for them. This is no consolation when your mum is being vile and obnoxious but you just have to try and ignore it. To me, it sounds like your mum is lacking capacity now - she's appears to be at the same level as my mum was when she was confirmed. This was done by a consultant psychiatrist, and social services should be able to get the ball rolling by arranging assessments for her. You need to take control now no matter how difficult it seems to you. Whether you do it by stealth (often necessary) or not doesn't matter - whatever gets the end result of your mum being safe and well cared for, and you getting help before you crack up. It's a horrendous strain dealing with stuff like this so you need to get as much help as possible. If you also alert social services under the Adult Support and Protection Act, they will take steps to prevent people like that disgusting slug taking advantage of your mum. Cancel the holiday - do whatever it takes - you'll be glad that you did. Good luck!

 

[CB100]

The start of my action plan happening!

Hi

So so far this morning I have been most productive. The hotel booking is cancelled. The taxi (yep private taxi all the way to Scarborough - gulp) is cancelled. Mother has been advised. Credit cards, Debit cards and cheque book now in my hand bag.

Carers have been updated so that they do not support her in her notions to go away.

Next a visit to a kind of friend of this chaps to discuss the matter with him.

Mother now booked to join a lunch outing run by community transport every third Friday.

Now to write a note to her sister who is not my greatest fan... explaining why I have said that this trip should not happen. Another gulp!

Carers org I will ring next week or maybe I will just bite the bullet and pop in to a coffee morning - better if I am spontaneous. I will also discuss all this madness with her psychiatric team when I see them next week and then give some thought to social services. My father has a non active social worker but my mother doesn't yet.

Phew its not 1130 yet and I feel quite chuffed and its all down to you guys! I was wallowing in despair last night now I feel quite productive! If not guilty.

No doubt I will be back on here later when we hit the next saga.

 

[Beate]

Well done! Don't leave social services too long as they tend to drag their feet.

 

[Spamar]

Well done

 

[Chemmy]

Brilliant. We're all right behind you.

 

[fizzie]

Well done you! Back in the driving seat - what a busy morning you have had!
I agree with Beate don't leave SS too long sometimes they take forever and definitely pop into carers and get some face to face support and lots of local info.
Looking forward to hearing from you soooooon x

 

[Pinkys]

Back in the driving seat! exactly. But deepest sympathy as I know how hard it is to assume a parental role with a parent, especially one who has been dominant and still retains a sort of shadow of that competence and status. All I can say is, it gets easier and easier every time you do it. And that trip sounded like a nightmare! WELL DONE.