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. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    33
    Oxford
    Hello, this is my first post. Basically my brother lives at home with my Mum who has recently been diagnosed with mixed dementia. He has always lived with her and is very much a loner. I have a family of my own but am happy to help Mum. He considers himself to be the main carer and gets carers allowance and also financial help from mum. She pays all the bills. He thinks he can make all the decisions without referring to me at all. I actually am in sole charge of washing mum, cutting nails, cutting hair etc, but this doesn't stop him thinking he does it all. Yesterday we had the very good dementia adviser to visit, all the usual good advice. When she had gone he said to me "I'm not having any carers in because I can't cope with that". No asking my opinion. Also he is refusing to implement the Power of Attorney yet because I know that Mum supports him financially and he thinks this might come to an end. Does a diagnosis of dementia mean you legally have to implement P of A? He refuses to spend any of her money in order to offset tax etc, and keeps the house freezing cold, so I have to freeze when I go there, (although her room is warm). He also keeps her upstairs, I have told him it would be much better for her to move her bedroom downstairs. He said if she was in the downstairs room below his bedroom he would hear every noise. He refuses to get her a tv or radio as it would disturb him. His negativity is too much for me to bear. I spend a lot of each visit listening to him moaning. He has refused access to other relatives even though it would be stimulating for her to see other people. Obviously Mum should be the main concern, but the whole situation is made so much more difficult for me due to his attitude. I would be so grateful for any advice anyone has! Thank you.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,898
    Female
    Scotland
    To be honest this all sounds fairly serious to me. What did the advisor think of her being kept in her room with no visitors and no entertainment? Did you tell her?

    It might not be as bad as it sounds but it sounds abusive.
     
  3. Pegsdaughter

    Pegsdaughter Registered User

    Oct 7, 2014
    129
    London
    I agree that this sounds like elder abuse not getting her a tv etc sounds alarm bells in my head. Please speak to the charity on elder abuse so or can't remember the name. They were very helpful when I was worried about a client.


    Sent from my iPad using Talking Point
     
  4. Essie

    Essie Registered User

    Feb 11, 2015
    563
    Hi Bud'sMum, I agree with the previous replies. I know abuse is a strong word and you're probably shocked to hear it but in terms of quality of life for your poor Mum there isn't much by the sounds of it. I know it's not what you're intending but tbh she'd be better off in a nice care home with company, her telly, activities, outings, visits from friends and family......... it does sound like your brother has problems of his own which have probably been there always but living with your Mum whilst she was still OK meant they didn't present so much of a problem but now there clearly is a problem and your Mum must come first as she isn't now in a position to voice concerns for herself. Could you arrange a 'best interests' meeting with the dementia adviser and yourself and your brother and put in place some aspects of care - such as daycare, that your brother can't control? You can also then raise the issue of no TV, upstairs only, no visits etc. and see what the adviser says. It may be that your brother is deemed not suitable to be your Mum's carer and better care can be sorted out on that basis. It can be that we see a situation as having to stay as it is or always has been but sometimes a radical change really is the only answer. Good luck and keep posting.
     
  5. Angela T

    Angela T Registered User

    Jul 13, 2014
    187
    France
    I agree with the previous posts - it does sound serious, and your brother does not seem to be acting in the best interests of your mother.

    To answer your question, a diagnosis of dementia does not legally require you to implement POA - power of attorney.

    But it means that you will need to have POA, sooner or later, to manage her affairs when she no longer can, and I would say you should get it asap - because if your mother is considered not to have capacity, the solicitor will say he cannot give POA to a person or persons of her choice.

    And then you would have to apply to the Court of Protection - which is a more complex procedure, from what I understand.
     
  6. brambles

    brambles Registered User

    Sep 22, 2014
    231
    Female
    NW England
    Hello Buds mum,

    I don't have any advice to offer but just wanted you to know I understand your situation.
    I too have a brother who lives nearer to my mum (though not with her) and thinks he does everything for her and knows what is best for her. In reality I do all the personal stuff, drs appointments, shopping, paperwork etc whilst he pops in now and then for a cup of tea!

    Mum is not keen to have carers and he supports her in this, also agrees with her she doesn't need a fall alarm etc.

    My mum and brother adore each other and of course I love them both and don't want to fall out with either of them.

    I am grateful to have him close to mum as he can go round quickly if she doesn't answer her phone (he is away at the moment and I miss him)

    I realise my problems are not as serious as yours but I wonder if you or someone else could have a serious talk with your brother and try and make him realise the reality of the situation and the effect his decisions are having on your poor mum.

    It doesn't sound to me as though your brother is being deliberately unkind but rather selfish and thoughtless.

    bramblesx
     
  7. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    33
    Oxford
    I did not have the chance to speak freely to the advisor as my brother was in the room. However I did get her phone number so should be able to speak to her on the phone. I have had several helpful replies, including yours, which has given me a fresh perspective on everything and I now realise I need to take some positive action. Thank you for your help. I will post again with anything new to report.
     
  8. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    33
    Oxford
    Thank you for your advice, I will speak to them. I'll carry on trying to bring positive changes, it's been great having feedback from people who understand, wish I'd come on here earlier!
     
  9. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    33
    Oxford
    Thank you, this is such an insightful response, I wish I had come on to this site ages ago. I am now seeing things with fresh eyes and realise I have put up with things for too long. Thank you for taking the time to help. Will post again.
     
  10. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    33
    Oxford
    Thank you for your helpful reply.
     
  11. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    33
    Oxford
    Thank you so much for the reply. Families can be so complicated! Unfortunately my brother always puts things to Mum in the negative: "You don't want strangers coming in do you Mum". And so of course she agrees. Then he says to me, well, we can't force her can we? When the adviser described the usual course of dementia he said he didn't think Mum would get as bad as that. Obviously he is in denial because he is understandably upset about the situation. I too am grateful for everything he does, and I think he is like a frightened child. All the feedback has made me realise I need to take action to somehow confront the situation (without causing an explosion in the family). I don't find confrontation easy though and do feel slightly bullied by him. Thanks again for your understanding.
     
  12. Bod

    Bod Registered User

    Aug 30, 2013
    1,178
    Are there any other family members/close friends that could be spoken to before your brother?
    It might be easier if a united front could be put up.

    Bod
     
  13. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    33
    Oxford
    Yes, that's partly the trouble in that he has isolated himself, and Mum, over the years from all her old friends. I do have another brother who has taken a much more confrontational approach in the past (who is unaware of these latest problems) which has lead to a falling out between them. I am in two minds whether to bring him into the discussion, as it might cause more harm than good! (Is a normal, loving family too much to ask for?!) My partner's being very supportive and he knows the full situation, and we are trying to figure out the best way ahead. I think I am so close to the whole thing that I find it really hard to think logically about it. When Mum asked whether someone was going to put her into a home, he said "Yes, they're sending you to the knackers yard". So then I had to spend ages reassuring her that he was "joking". (really funny). Sorry to rant, and thanks for the support.
     
  14. Bod

    Bod Registered User

    Aug 30, 2013
    1,178
    Would your mum like to be in Care Home?
    What would your brothers position be if mum went into care?
    Would he be able to stay in the house, or would he have to find his own?
    Is he able to support himself?

    These may be the questions that need addressing, to settle his mind as well as mums.

    Bod
     
  15. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    Your situation is *very* concerning. I thought, with the others, that this is clear elder abuse, but I wanted to find out what constitutes elder abuse in the UK. This is what I found. It makes very clear that what you are describing is elder abuse. "If you’re being cared for, abuse can include not giving you enough food, not keeping you warm, refusing to take you to the doctor when you’re ill, or stopping you from seeing friends and family. It’s possible a person could mistreat you in more than one way." Please read this whole set of articles, consider your options, and start working for your mother's better life. I'm so sorry. You have a difficult road ahead.

    http://www.ageuk.org.uk/health-well...mily/protecting-yourself/what-is-elder-abuse/
     
  16. I wonder whether brother is terrified that if Mum goes into a home he will lose his own home, as well as the carer's allowance and what she gives him (and she pays all the bills too). Depends whether it's rented, if so whose name on tenancy, or owned, again by whom, and on his age and any other factors I think. It may also be that he's scared to let too many other outsiders see her in case they think that she needs to be in a home.

    Has he got problems of his own? Did he work before starting to be her carer, and give up a job, or has he always been dependent on her?

    It really sounds as if the current setup is not in her best interests - no visitors, no tv, kept in her room, and verging onto financial abuse. (When we moved in to look after Mother we still had our own house 2 hours away which we scarcely saw but were paying bills for, so it seemed reasonable for her to carry on paying the bills on her house, but we carefully kept track of grocery shopping etc and charged her 1/3; as soon as she moved into care home we took over all the bills for the house). Is he hoping that if he runs down her capital she'll be eligible for state funding for her care, perhaps? If she's paying all the bills for a jointly-occupied house, and giving him an allowance, it might be claimed by the council that she's voluntarily depriving herself of capital?

    Please talk to your dementia adviser. Aside from the money, she needs a more stimulating life. Would he let her go out to a day centre, perhaps? More stimulation, company, etc, but without anyone venturing into his territory? Though it would cost, and he'd be reluctant to let her spend her money?

    Good luck.
     
  17. In a Whirl

    In a Whirl Registered User

    Feb 23, 2015
    62
    I went through a somewhat similar situation with my sister & being reasonable got me nowhere. It was only resolved by asking Social Services for advice which triggered off several fact finding visits by a Social worker & a meeting to which the siblings had to attend. Money & control over events were at the heart of the problem in reality.
    As you can imagine the relationship between sibs has been very much damaged. I realised this might be a possibility but felt mum' needs came first.
     
  18. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    33
    Oxford
    The thing is I don't expect she would want to go in a care home. Her life with my brother is what she has known since my Dad died about eight years ago. Even before that my brother has been incredibly controlling of her.Years ago she was a bubbly, sociable person, and has gradually become as insular as he is. He has ground her down. I'm not sure she even remembers that there should be joy in life. I have tried in the past to speak to her about being controlled by him, but they have a strong bond. I suppose most of us would want to remain in our own homes. Change is scary.But she really has no quality of life at all. He would have nowhere to live which is why he wants to keep her at home in order to keep his inheritance intact. I suspect a lot of his decisions are influenced by his position. Having said that, he has paid no rent for years and years, she pays all the bills and also she financially helps him (don't know to what extent) and he gets carers allowance. My main frustration is, I am involved in looking after her, so I should be involved in decisions about her welfare. Today he said he will not tolerate strangers coming into the house (carers) and I said "It should be about what's best for mum". His reply was that if it wasn't for him she wouldn't still be able to live at home. He tries to emotionally blackmail me. Age UK were going to send a person to chat with mum for an hour a week, something I would really welcome, he has said a firm no to that as well. In the end I had to walk away. In contrast I had a lovely visit with mum today, who says she would like a chocolate rabbit for Easter! Least I can do. Am going to ring the dementia adviser next week. Thanks again for chance to get my head around stuff!
     
  19. Bud's Mum

    Bud's Mum Registered User

    Mar 18, 2015
    33
    Oxford
    Yes, being reasonable's got me absolutely nowhere. This must have been really hard for you, and I suspect I am only putting off the inevitable. As you say the incentive has to be the welfare of the parent concerned. I need to man up. Thank you so much for the input.
     
  20. Darren 48

    Darren 48 Registered User

    Sep 4, 2014
    11
    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.
     

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