Controlling next of kin and the extended family

Discussion in 'Middle - later stages of dementia' started by Steve in Bolton, Feb 10, 2015.

  1. Steve in Bolton

    Steve in Bolton Registered User

    Feb 10, 2015
    6
    Hi
    My uncle was diagnosed with Alzheimers last year and has recently been admitted to hospital after a rapid deterioration since New Year. He is still married and has four kids who all now live away from home around the country. I have been taking his sister [my aunt] to see him and she in turn has been letting his brothers know how he is getting on. Recently we have noticed a real reduction of what we are being told by the nurses and carers about my uncle, specifically we can't get any idea of where he is upto with medication so can't gauge any improvement/deterioration. Just today, the nurses refused permission for his sister to walk him to the cafe for a refreshing cuppa which would have made his day. He is not violent or aggressive in any way and is frustrated to be shut in a small day room all day long. We believe that his wife is being very controlling with him as she has been throughout their marriage and stopping any information being given out. So the question that I ask is this; Does his sister and brothers have the right to know about his medication and his care and his condition? Is the next of kin allowed to take total control of every aspect of his care including who gets to visit him?

    Thanking you in anticipation of your replies
    Many thanks

    Steve
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,425
    Hi and welcome to Talking Point.

    Hmm - well family should be consulted to a certain extent but I have to say if he has a wife I would actually be surprised if the hospital was permitted to give out information to anyone other than the next of kin, and I can tell you from personal experience, they can be pretty stingy with info even if you are the next of kin.

    If you're asking do his sisters have the right to override the next of kins wishes, the answer is probably not. As for the not permitting him to leave the ward, I think a lot depends on what kind of ward he is on, and the possible effect it might have on him when he returns to the ward. If his sister wants to do this, the best approach would be for her to ask his wife if she has an issue with her doing this and if not, ask the hospital for their rationale in prohibiting it. They might have a valid reason.
     
  3. Steve in Bolton

    Steve in Bolton Registered User

    Feb 10, 2015
    6
    Hi Jennifer and thanks for the post

    Unfortunately in this case, my uncles sisters and brothers have not been consulted at all and they are now being edged out even more. It isn't that they want to change anything, it's more that they want to find out the position with their brothers health. Their sister-in-laws comments on the matter are very limited and lacking in compassion! There's no question of them wanting to override decisions made by the next of kin for health reasons at all, it's all about them not being able to get a medical opinion about their brother. From my angle, I'm asking because of the age and lack of IT awareness of my aunt and uncles.

    The effect on him leaving the ward for a little walk to the canteen is a good one when his wife takes him but it seems that she would only have herself be able to do this which seems very controlling.

    He is on an admission ward for older people suffering from cognitive impairment. This really begs the question of my uncles rights. Does he not have any freedom to choose?
     
  4. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    Hi Steve

    Does your Uncle have any problems with walking? Could it be a safety issue re falls etc?

    Has your Uncles wife actually put a block on visits from his family? I'm at a loss to give any advice as I would have thought that yes your Uncles wife could express her wishes to the Hospital Staff. Do you think that one or two of you could sit down with your Uncles wife and explain how worried you are?

    Take care

    Lyn T XX
     
  5. Steve in Bolton

    Steve in Bolton Registered User

    Feb 10, 2015
    6
    Hi Lyn and thanks for the post

    My uncle is totally mobile and there aren't any safety issues that I'm aware of. My uncles wife is unfortunately not approachable, she is very controlling and puts her own spin on things. This is really why my family members want to get a professionals view, this is purely to understand the problems facing their brother.

    In his situation does he have any rights to make choices for himself? It seems almost like the hospital is being used by his wife to impose her will upon him.

    It's hurtful to his brothers and sister and I feel that, should it continue along the same lines, it will result is his pride and dignity is being removed as a consequence
     
  6. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    Do you know if he has capacity (however limited) to make decisions for himself? Just because a person has Dementia it doesn't mean he/she can't make their own mind up as to what they want to do. However as your Uncles wife IS next of kin I would advise a sympathetic approach to her, even if you are seething inside.:eek:

    Do you visit the same time as the wife? If so how about suggesting that one of you accompany her and your Uncle to get a cup of tea for instance? I can understand your worry, and point of view, and realise that you have your Uncle's best interests at heart. I also can't understand why his wife is being rather secretive. However, sometimes we just have to try everything not to rock the boat -even if it appears the other person is not being particularly nice:(

    I wish you all the best

    Lyn T
     
  7. Steve in Bolton

    Steve in Bolton Registered User

    Feb 10, 2015
    6
    He has the capacity for decision making in fact when you ask him questions that require a direct answer he is quite coherent. He has a wandering mind though and goes off on tangents in free conversation. It's really this that begs the question as to how far along the scale of treatment he is so that we can understand where he's at with the condition.

    We have visited at the same time as his wife and we have visited at other times and the idea of a trip to the canteen for a cuppa was not one that went down well with his wife. I think that the secretive approach is all to do with control but of course, when you can't find anything out it is hard to prove that she is being secretive. Catch 22 to some extent! I'm happy to rock the boat or to zip my lips and not rock the boat, it's about what's right for my uncle and his sister and brothers in trying to be supportive.

    Thanks for the chat
    Steve
     
  8. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    I'm guessing your aunt has been part of the family for years, if not decades? How has (honestly) that relationship been? If there have been previous tensions, maybe unspoken, then I could quite see how she is now exacting her revenge for slights in the past.

    Forgive me if I'm suggesting anything out of line , but I know that the relationship between my own mother and her sister in law, which to all appearances was good on the surface, was actually not great once you dug a little deeper.
     
  9. tp18

    tp18 Registered User

    Oct 8, 2012
    144
    It is a difficult one, but I would say that the hospital does not have any obligation to divulge personal medical information to anyone but the patient and the next of kin, and in fact may be overstepping their mark if they did so (especially if the patient or next of kin later complained about that fact).

    If you are saying that the patient has capacity, then technically there is no need for the hospital to pass on any information to anyone. If the patient lacks capacity, then the nearest relative should of course be kept informed.

    I am sorry to sound so matter of fact, but please dont mistake this for the fact hat I also feel for you in as much as you want to know about your loved one. Sometimes the rights which protect our privacy also hinder us !
     
  10. Caroleca

    Caroleca Registered User

    Jan 11, 2014
    332
    Ontario canada
    Is it possible that she hasn't felt supported up until the hospital stay? If one has not been involved with the day to day looking after of the person with dementia....it is very difficult to explain the "condition" to them. What exactly is it that you need to know? It has always been policy that only the next of kin be informed.

    I could have this all wrong, but if you aunt is the main caregiver, is it possible she doesn't feel "support" from her husbands family?
    Carole
     
  11. Steve in Bolton

    Steve in Bolton Registered User

    Feb 10, 2015
    6
    Hi and thanks for today's posts

    It could very well appear in this online conversation that my uncles side of the family has not been supportive, however looks can be deceiving at a mere glance. It's unfortunately not possible to go into the intricacies of family relationships in such an online discussion, but it should be said that most offers of support have been rejected. Whilst individual families are not always close knit, brothers and sisters have a bond from childhood and it's that that seems to be being tested/broken as they enter their twilight years. I certainly don't think that there's any suggestion of revenge for previous disagreements [as per Chemmy's question] and I really don't mind directness in questions and/or comments.

    My question was two fold originally and I seem to be getting to the answers.
    Firstly I wondered if the next of kin could stop the passing of general information about state of health of my uncle to his sister and brothers. That does seem to be the case. Secondly, I wondered if my uncle has any rights to make decisions for himself whilst he is capable to do so, even about the most minor issues. That doesn't seem to be the case whilst he is being 'managed' by his next of kin.

    My position as nephew is merely to accompany my aunt whilst visiting and to try to answer some questions that she has, using forums such as this. [Being around 80 yrs old she is not so handy with the internet]. As a bonus, I get to see my lovely uncle who sadly is no longer in the prime of his life.

    Many thanks for all the posts, I think I've probably found out what I wanted to learn. Good luck to you all :)
     
  12. tp18

    tp18 Registered User

    Oct 8, 2012
    144

    as an add-on, the hospital / SS can arrange a Mental Capacity test, and it is they who, certainly in the case of my mother, can determine whether a relative actually has mental capacity. Moreover, in the case of my mum, they ruled that whilst she had capacity in some areas, she had none in others. In her case, she had no clue about looking after herself (she can boil a kettle if you ask her to, and possibly make a simple meal, but she would never think to do either for herself if left to her own devices, and would literally starve before fixing herself a meal), but where they determined that she DID have capacity, was to know who she wanted to have access and decision making rights with regard to her health. Mum therefore got to choose, and she chose her main carer (me) over and above her nearest relative (an elder sibling).
     
  13. Steve in Bolton

    Steve in Bolton Registered User

    Feb 10, 2015
    6
    TP
    I'm really sorry to hear of the issues that you are dealing with and I hope that you find the strength to come through it as best you can.

    I didn't know about mental capacity hearings so thank you very much for this. I suppose that the next problem would be how to find out whether or not he has had one or not because we are not allowed to ask any questions of the staff by order of the next of kin. At least we have something to go on though.

    Thanks again
    Steve
     
  14. tp18

    tp18 Registered User

    Oct 8, 2012
    144
    Thanks for your good wishes, and of course I hope you in turn find a resolution for your dilema :)
     

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