Difference of opinion on how best to care

Discussion in 'I care for a person with dementia' started by Bud's Mum, Mar 18, 2015.

  1. Darren 48

    Darren 48 Registered User

    Sep 4, 2014
    Lincoln uk
    Hi buds mum,I'm 49 My wife is 40 we both care for my mum who has lived with us now for two years after being diagnosed with AZ three years ago before this her stepson looked after all her money affairs and yes diddled her out of thousands and because he did not register POA nothing was done only the police made him pay back £6'000 which was a drop in the ocean what he took .Once capacity is lost you cannot force a POAnits all been a nightmare and last week we went to court which has now ended with a solicitor running mums banking affairs which is going to cost mum even more money per year.
  2. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    I am sure the reason he wants to keep everyone away is to keep things as they are, with him controlling the situation. The house belongs to her and he is reliant on it for somewhere to live. He has quite a nice set up financially, and doesn't want it threatened. He has lived there all his life, did used to work until he had go give up a physical job through an injury. He has always been a loner and has always been spoiled by mum. When she was able to she did absolutely everything for him. I do know it's not easy for anyone to care for someone 24 hours a day but his attitude is that he knows absolutely everything about life (despite never having had a relationship, children, moved house, etc etc), and also he thinks he is totally heroic for what he's doing. His favourite phrase: "It's the hardest thing I've ever had to do". Well, I always think of course, because you've always been shielded from life til now.
    Thank you for your help, I will ring Dementia adviser next week.
  3. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    Thank you for info, will definitely read these this weekend. I really appreciate your help and support. I did read on the Action on Elder Abuse website their definition of elder abuse: "A single or repeated act or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person". I suppose one question which troubles me is if I got her out of that situation (which she is used to, and is all she knows, and is familiar to her) would she hate a new situation, and would it cause her to deteriorate faster. As you can tell, I do argue with myself!
  4. In a Whirl

    In a Whirl Registered User

    Feb 23, 2015
    Oh dear,Bud's mum...you are indeed going to have a tough time of it.Nothing worse than coping with someone whose "halo" is important to them! Been there too.Hope you know whats going on financially. My mum had been persuaded to sign batches of blank cheques so that the bills could be paid. In reality they went into my sister's pocket. Mum had forgotten that the recurring bills were paid by direct debit.
  5. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    eastern USA
    Lovely to hear how you are working over these issues. In a care home, your mother would have much more interaction than she seems to be having at home. My belief is that this interaction - not to mention the warmth, concern of others in the home, etc. - would help your mother have a better quality of life. Now, as far as your brother is concerned, this will not be a good idea, as you'd likely have to sell the house and deal with family stress in order to move her.

    I think you'll see, however, if you read the items in the link I sent, what you report is not care but abuse. Your laws in the UK are set to prevent this. I'm sorry for your brother, but his life is not more important than your mother's . . . . In my view.
  6. mage

    mage Registered User

    Jan 1, 2015

    I am sorry to hear about your dilemma with your mam....as for power of attorney you can apply on line your self , It only cost's about £100, I rang a solicitor only to be told I was probably too late but it would cost about £1200.
  7. Essie

    Essie Registered User

    Feb 11, 2015
    #27 Essie, Mar 21, 2015
    Last edited: Mar 21, 2015
    Stay strong

    Hi Bud's Mum, I think it's clear that doing nothing, ie. leaving everything as it is now simply isn't an option anymore - and you probably knew that before posting on here but a bit of back up can help us to face facts and bite the bullet.

    It isn't going to be an easy time and there won't be a magic wand to wave (or we'd have all bought one!) but your desire to do the very best for your Mum will carry you through and if ''real life'' is about to hit your brother in the face, well so be it, he has painted himself into this corner by his life choices but his choices can't be allowed to adversely affect your Mum's remaining years.

    Stay strong, you're doing it for your Mum so it's all worth it!
  8. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    I think this is a serious issue too. I know it is hard to say, but it sounds like your brother is taking care of his own interests, not your Mum's. Whilst it is not likely that he would lose his home, should your Mum go into care, he would be worse off financially because your Mum would no longer be paying bills in the home and he would lose the care allowance.
    If a best interests meeting doesn't work, you may have to bite the bullet and raise a safeguarding issue with Social Services. They will then step in an assess your Mum quickly and decide what's best for her. It's heartbreaking to go against a sibling but you may have no choice if he will not listen to you or include you in decision making about your Mum's care. Good luck.
  9. susy

    susy Registered User

    Jul 29, 2013
    North East
    I know there are always 2 sides to a story, and the social services will have to listen to both but.... Is anyone else reading this and thinking this is like a captor and hostage situation. They have a close bond but he controls everything. It sounds like he is totally dependant in your mum and his belief that it won't be that bad is totally head in the sand.
    To move forward with this you are going to fall out with your brother, there is no doubt about that in my mind so please be prepared for this. Your other brother may be a great help or a total hindrance here, I don't know them so can't advise which way to go.
    Does mum already have power of attorney? If not it's best to get it. Also all the financial dealings should really be transparent already, that way your brother can be absolved of financial abuse..... Or not.

    Best of luck. Do keep posting xxx
  10. Caroleca

    Caroleca Registered User

    Jan 11, 2014
    Ontario canada
    I was wondering about a couple of things. First of all is mom fed? Is she clean? Does she only sleep upstairs or is she there all day? I am not trying to be difficult but looking after a parent is not an easy task. If mom is happy and cared for...maybe your brother resents interference because he feels he is doing the lions share of the caring. Honestly, I don't know the details but if things have been fine for years maybe mom is quite happy with the situation. Is she asking for a tv in her room? You said he keeps her room warm. Do they eat together downstairs? I know this might sound odd but maybe mom is not wanting visitors. I know my mom never wanted visitors. I think before everyone jumps to the conclusion that mom is being abuse, there has to be more information IMO.
  11. Bod

    Bod Registered User

    Aug 30, 2013
    How old is your brother, and does he have any recognised disabilities?
    If so then the house may be unable to be sold to pay for mothers care.
    Yes he would some income, but may be entitled to other benefits.

    As others have said you will have to bite the bullet and get Social Services involved.
    For all their faults, they do have experience and powers to deal with your situation.

    If you haven't already, get the Powers of Attorney, it can be done without your brother knowing, till its to late.

  12. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    #32 Bud's Mum, Mar 23, 2015
    Last edited: Mar 25, 2015
    I understand what you are saying, and keep asking myself should I rock the boat, so to clarify: She is fed; mostly things out of packets and tins, not judging, just the truth. He is disapproving if I take treats.It is quite a frugal existence (not because they can't afford it). In other words, mealtimes are not pleasurable, just a chore to get out of the way. They don't eat together. She is upstairs all the time, he doesn't get her dressed, nightclothes all the time. Small bedroom, either in bed or in the chair. She still manages to walk along the cold landing to the toilet, which is all the exercise she gets. Last summer I wanted to get her bed downstairs and at the last minute he cancelled moving arrangements. He says the decision was hers but not so sure. In any case, it would be much better for her so should she be given the choice? She's not keen on any change to routine. She has urinary incontinence day and night. To save money, he was using one pair of pants for the whole day and night. I have recently got it through to him to change the pants more regularly, and a new pair at night. Last week her nightie and dressing gown were soaked when I went to wash her, he said he'd stick them on the line to dry (without washing) but I insisted on washing everything. She is clean because I go in to give her a bedbath on a regular basis. He does not enable her to wash her hands after visits to loo. I know it's not easy for him, he's there 24 hours a day, but he's lived there all his life, it's his home. If I had a spare room, she could come here, I would find that much easier than having to speak to him every time I see mum. Recently she broke her pelvis and was hospitalised for six weeks. We visited every other day with him doing the other days. It was so lovely to interact with her without him looming, she obviously liked the company and attention of (most) the hospital staff and partly this has what made me realise how different her life could be. My dilemma: ok, he's not being aggressive physically or anything terrible like that (he does tease her, which in her state of mind, is totally wrong I think) but her life quality is pretty low. Is it right to keep things as they are just because she's used to it? Maybe he is genuinely doing his best, is that best good enough for mum? You could say it's not his fault that he's not that capable, she did everything for him, he's never had to look after kids etc. To him, making a phone call is a massive deal. It is very difficult for me to give him a break, when I am there he looms the whole time, obviously I say go and have a sit down (or whatever) when I am here and make use of me, but he can't step back. Soon as I'm done with the practical stuff with her he pops up again. He won't go out when I come there (he is a bit paranoid, not sure quite what he thinks I'm going to do). One thing I refuse to do is spend more time there, only to listen to him moaning all the time. No problem at all with spending time with just mum, but he doesn't enable that to happen. I think perhaps she's so used to no tv by now, she doesn't see any point in having one. I think she should always have had one. Or at the very least a radio. As I say, she's used to things as they are, does that make it right?
  13. Pegsdaughter

    Pegsdaughter Registered User

    Oct 7, 2014
    Dear buds mum no it does not make it right. Not washing her hands after a visit to the loo equals all sorts of nasty things to make her very ill. Please please speak to the elder abuse charity, you have set the problems out quite clearly for us so get advice from the experts. When they confirm the advice you have been given on here perhaps you will feel less guilty about rocking the boat.

    Sent from my iPad using Talking Point
  14. piph

    piph Registered User

    Feb 4, 2013
    I agree, no it isn't right - she is used to it, but then, everyone can get used to anything if it goes on long enough. You really need to get some proper advice asap, before something awful happens. You don't say how she broke her pelvis? If all she's doing is walking to the loo and back then to seems likely that there might have been some foul play involved, whatever you brother says. Please, please get SS or someone else involved. If you phone SS use the phrase 'vulnerable adult' and 'possibility of abuse' and that should get them moving smartish.
  15. Angela T

    Angela T Registered User

    Jul 13, 2014
    No, it does not sound right, it sounds as though your brother has serious issues, and he is not in a position to act in your mother's best interests.

    From what you describe, he sounds manipulative, probably without realising it, but he can't step back and see what is best for your mum, he is putting his needs first.

    I do think you need to get an outside authority involved - if anything happened to your mum, you would feel bad. And even if nothing awful happens, you will always feel you should have done more for her.
  16. Essie

    Essie Registered User

    Feb 11, 2015
    As others have said Bud's Mum, what you have described is NOT OK, it is existing not living and as someone else has said even if nothing truly terrible happens you are wanting now to make things better for your Mum, when she's gone you won't have the chance and you'll berate yourself for not doing so when you could.

    If your brother has always lived in the house SS can't deprive him of his home just because your Mum needs residential care so he may get to stay in the house anyway but your Mum must come first - not even washing her soiled knickers?! :eek: That's so beyond not OK. I think when you start to get others involved it will quickly be decided that the 'care' provided by your brother at home is woefully short of even adequate and does in fact constitute abuse - never mind anything else she has a basic right to be clean and dry - would he sit in wet pants for 24 hours, I doubt it.

    Do what you know you need to do, please.
  17. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    eastern USA
    Hello. I don't know what the laws are, but the situation seems urgent to me, and I can't really understand how it has escalated to this point without an intervention. I am well aware that each family has its own dynamics, but the situation described here is very out of the ordinary. Please spend no more time writing to us here and instead gird yourself and get your mother into a better care situation whatever it takes. Her living conditions are unclean, likely to cause illness, and abusive. I don't understand how it could have gone on this long. Please act to get assistance and create an intervention. These are conditions that we don't even want our pets to experience. IMHO.
  18. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    There is ABSOLUTELY no suspicion of foul play. I am 100% certain about this. There is no way on earth that Mum would still be there if there was even the slightest chance of that. She has osteoporosis and so is prone to a fracture from a fall.
  19. "If all she's doing is walking to the loo and back then to seems likely that there might have been some foul play involved" (quote from an earlier msg)

    Quite so, Bud's Mum: I think the earlier contributor was unduly alarmist.

    My Mother broke her pelvis in a fall in the kitchen when I was at her side - it only takes a trip (I think in her case it was cos she'd dug out some tatty old sandals from the back of her wardrobe and trod on the strap or something). She had a diagnosis of osteoporosis and was on a calcium supplement, but I think that was only the GP reacting to her breaking her collarbone falling on a country walk 10 years earlier. I'm sure there's no suspicion of foul play in your mum's fall. It really doesn't sound as it that's anything you need to worry about.

    Your brother means well, but isn't providing the quality of care and life that she's entitled to - the all-day wet pants sounds like a recipe for painful skin infections, and the lack of stimulations just sounds terribly sad. And possible financial ... irregularities, shall we say. Good luck.
  20. Jessbow

    Jessbow Registered User

    Everyone has rights, you, your Mum and your brother.
    I guess your brother has the right to do his things his way


    To the same tune, so do you. If you are at the point of someone else needing to do the intimate care, then that is what should happen - let your brother do his stuff but insist that Your bit are just that - and delegate accordingly. No, it doesn't sound as though he's capable of doing these things.

    Everyone has needs, Physical needs, emotional need, the need to be stimulated, it doesn't sound as though she's getting very much of any of these.

    I would certainly be getting social services involved- and now! You arrange it, and turn up with the S/Worker ( they will understand, believe me)

    Don't tell him they are coming, just turn up.

    Yes the **** will prob hit the fan,maybe it as to, and maybe it will cause fall out with your brother, but its about mum not him.

    Her existence sounds a very sad one, like he's waiting for her to pass away which understandably must be hard for him if that is all he's ever known, but maybe he could gain from the intervention too.

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