What to do if I suspect emotional and physical neglect

Discussion in 'Middle - later stages of dementia' started by Charlie Bichon, Jul 15, 2014.

  1. Charlie Bichon

    Charlie Bichon Registered User

    Apr 2, 2013
    4
    My b-in-l lets my 70 year old sister stay in bed, not necessarily sleeping, until after noon time most days. He doesn't give her the prescribed pills until she gets out of bed. He rarely takes her anywhere, unless it's to his sister's home so that he can shop, cut grass, etc., and my sister only watches TV there. She no longer speaks, other than the odd few words. B in L refuses to take my sister to Alz. meetings, refuses help in the home (qualifies to have someone in every morning to shower and dress my sister), doesn't recognize that terribly swollen legs and feet need attention. Has spoken of reducing water pills to help reduce incontinence, actually stopped cholesterol pills, stomach pills for a few weeks, in an effort to ease Alzheimer symptoms! Has let her gain over 3 stone in weight. She can no longer get out of any easy chair or sofa unaided. Once I saw him tug her up from the sofa so sharply (after giving her a sleeping pill 20 minutes earlier), that she fell straight to the floor on her knees. He then complained that he wouldn't be able to pick her up as she weighed too much. But, he showers her every day, cleans up when she has terrible diarrhea, combs her hair, dresses her nicely, does all the cooking (doesn't clean much), does all the laundry, which there is a lot of as she wets the bed most nights.

    As you see, two very different sides to the coin. I've pleaded with him, tried to reason with him, tried gentle suggestions, tried being very direct with him. It seems all to no avail. (I live overseas). Everyone I know has pleaded with him too. I'm at the stage of beginning to think of approaching Social Services. But is this what my sister would want? I don't know what to do any more.
     
  2. meme

    meme Registered User

    Aug 29, 2011
    1,955
    Female
    London
    I think he is doing a sterling job...nothings ever perfect.....I wouldn't contact social services unless he is in agreement..after all it is him on the front line looking after her 24/7.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,322
    Kent
    I agree with meme. Your brother in law is managing a very difficult situation. Your sister is safe, clean and fed, there is only so much one person can do in 24 hours and these are his priorities.

    One thing I would ask. Does your sister seem unhappy or distressed. If so there might be a case for bringing in outside advice.
     
  4. jeany123

    jeany123 Registered User

    Mar 24, 2012
    19,049
    Durham
    It sounds as though he is doing his very best, I wouldn't criticise his way of coping, It sounds as though he has his priorities right ,
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,694
    Female
    London
    He is probably one of these proud blokes who think they can cope on their own without outside help. To be honest, you do say he cooks and cleans and observes her personal hygiene. It’s difficult to take dementia patients out and I don’t see the harm in her watching TV while he does other chores at someone else’s house (why does he as a fulltime carer have to do that anyway?) The thing that worries me however is his attitude towards your sister’s medication. If he has a problem with any of the pills he should talk to the doctor about it and not just stop them on his own accord as that could be dangerous.
     
  6. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    Oh Dear this is very sad. He sounds like my late FIL who didn't have, or ask, for any help for my MIL. He had very good intentions but used to put food in front of MIL and, whether he was in denial or ignorant of AD, used to just take the untouched food away. He didn't ask for help until MIL turned on the gas one day and set fire to the kitchen when she placed a plastic electric kettle on the hob.

    In your BIL's case I think he sounds in denial to some extent, maybe it's pride, perhaps he's in such a state that he feels ashamed because he's not coping or maybe he feels he IS coping. Whatever the reason it isn't any good for your Sister. I really can't answer what your sister would want BUT her safety and wellbeing is the important thing of course. I would contact SS's, but I'm afraid that they may allow your BIL have the final decision with regard to help coming in.

    As is often mentioned on TP, sometimes it takes a crisis situation to arise before SS's step in.

    So sorry that you are so worried

    If you can, come back and let us know what the outcome is.

    Take care

    Lyn T
     
  7. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    I agree with others, I don't think your BIL is neglecting your sister but is more unaware of how things can perhaps be helped for people with dementia.

    I have early onset symptoms, and if someone tried to get me out of bed on days when I feel absolutely terrible they would get very short shrift and it's not just about cajoling I need to rest much against what I would necessarily want to do but fighting my body all the time makes things much worse.

    It sounds like your BIL is having difficulty coping if he thinks that reducing water pills will stop incontinence, the outfall of which he has to cope with, without having detrimental effects on your sister's health. I would try and contact the GP and share some of your concerns and see if there is a way he could have some support. If he is not able to share what is happening he can't get any other perspective on it than his own. Would he come on TP? Qualifying for help and getting it to happen isn't necessarily that easy when your in the midst of caring and is sometimes easier to struggle on - or so it can seem. Could you offer to assist in making any necessary phonecalls that could help?

    It must be hard for you being so far away from the situation, is it possible for you to visit yourself and maybe you would feel better about things?
    Best wishes
    Sue
     
  8. BLONDY

    BLONDY Registered User

    Oct 29, 2011
    78
    2000 MILES AWAY
    I think you BIL is suffering so much it is he that needs help how about giving him the day off or suggesting your sister enters a care home for respite which would do him the world of good sometimes you can be so bogged down you cannot see the wood for the trees.
    Kind Regards
    BLONDY
     
  9. Charlie Bichon

    Charlie Bichon Registered User

    Apr 2, 2013
    4
    #9 Charlie Bichon, Jul 15, 2014
    Last edited: Jul 15, 2014
    To clear up some points: My bil drops my sister at his sister's house so he can do his own shopping/grass cutting, etc.

    I live 4000 miles away and have visited 3 times in the past 15 months, trying to do all I can do whilst there. Includes getting my sister to the Dr. because of terribly swollen feet and legs, calling in the District Nurse and completing necessary forms for incontinence supplies; confirming with Social Services that my bil could have someone come in daily to shower and dress my sister; arranging for a relative to come in to clean as often as necessary; cleaning the house whilst I'm there, laundry, ironing, windows - spring cleaning in effect. All of this is done even though my bil doesn't really want me to do it, and he still refuses to let anyone come in to help my sister or himself.

    He keeps her clean, feeds her (unfortunately too much of the wrong foods - she's put on at least 3 stone), but what is so hard for me to accept, is that I feel her emotional needs and physical fitness are ignored. It could be worse, he could leave her dirty and unfed. Of course, if he did do the foregoing, it'd be easy to call in Social Services. As one person said, perhaps he feels he is coping to the best of his ability.

    I've explained many times, as have others, that if he accepted help, he'd have more time for himself, and probably stay healthy, which my sister needs him to do. He understands all this, but still says "No". As said previously, after seeing my sister hobbling along because of her swollen feet and legs, and her saying "hurt" when I asked what was bothering her, I arranged for her to see the Dr. and get water pills. Imagine how I felt a week ago when my bil said he was thinking of cutting the pills down to one every other day because of the continence problem. All I could see in my mind's eye was my sister hobbling along, not complaining, just putting up with it. It makes me feel terrible. This latest happening is what, I think, has led me to think of going to the Social Services.

    I have read with interest, and another perspective, the replies to my post. I certainly see now that what I have thought was my sister withdrawing (staying in bed), may be because she doesn't feel well enough to get out of bed. She can't tell us so we'll probably never know. Perhaps with regard to my sister having more of a 'social' life, I'm being unrealistic. Then again, she does have a wheelchair which would help, if only by bil would use it. He never has. I've asked him why he doesn't let her go to the Alz. meetings instead of to his sister's, but he just says he's not taking her there. He refuses to take her to our relative's house to visit (who has cancer) and certainly discourages them from visiting. I just don't understand where he's coming from.

    Anyway, it's helpful to be able to write all of this down, receive and read your replies. As of yesterday, my bil says he hasn't reduced the water pills, so as long as that is the way things stand, I'll probably leave it at me having a moan and will try to understand his point of view. This is one of the hardest 'journeys' I've been on and I take my hat off to all the other people who have, or will, travel this same path, most especially those who are diagnosed with dementia of some kind or another.
     
  10. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    Hi Charlie

    How do you think he may respond to a home help going in once a week to do the things like the spring cleaning which you have obviously been doing? It would be another face for your sister to see, and assist your BIL with the things that he is struggling to manage. Or someone to take your sister out in a wheelchair for some fresh air. He may feel his emotional needs are not considered because his wife can no longer do this and he may be very depressed himself. It does sound like they could both benefit from an assessment of their needs but he needs to cooperate unfortunately for that to happen.

    It must be very difficult for you being so far away. I hope you find a way, to improve things for your sister and ease your concerns too.
    Best wishes
    Sue
     
  11. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    And he probably is Charlie; however, as a previously full time carer (husband now in CH) one of the most difficult things to do is ask for help. I actually felt a failure. I also had to admit that getting help (daycare in our case) helped my OH because it helped ME. Only you can decide whether to make the call to SS's or not. Have another think about it and go with your instincts.

    Let us know how things are if you can

    Take care

    Lyn T
     
  12. Jessbow

    Jessbow Registered User

    How about book some annual leave and TELL HIM, he's having a holiday, you could then stay for two weeks and see what he goes thorough on a day to day basis, give him a proper break.

    It might be that his cooking skills are not wonderful- but he cooks, maybe, as you say, the wrong foods( weight gain) but it might be that she is picky. so many sufferers will prefer sweet things to savoury and sometimes its hard to get them to eat anything at all!

    What are her emotional needs? socialising? not easy to do with dementia
    If she's happy to stay in bed, then I'd let her. maybe encourage her to have her pills a bit earlier, but if shes comfy and happy I wouldn't worry about it.

    you don't give any clues to their age- older people do need more sleep
     
  13. Beate

    Beate Registered User

    May 21, 2014
    11,694
    Female
    London
    #13 Beate, Jul 15, 2014
    Last edited: Jul 15, 2014
    Try to see it from his point of view: He's doing his absolute best and he gets no time to himself so if he wants to do the shopping or tend to his garden he has to bring his wife to his sister so she can keep an eye on her. And all the time people are on his back, nagging him to do this that and the other. Yes, he gets things wrong but which carer doesn't?

    Instead of complaining about him to Social Services which is a bit drastic, try to give him a proper break. As others have said, if you took over for a while you'd probably appreciate what he does all day. He needs educating about her medication and maybe a joint visit to the GP might be a good idea?

    It sounds like he needs more help than he is receiving at the moment but it's very difficult to give help when there is resistance. Maybe sit him down one evening and tell him how much you appreciate what he does for your sister and that you know he is doing his best but that you are concerned he is burning out so is there anything you can do for HIM to ease HIS burden?

    With regards to him not taking her out much, maybe it's difficult to do so (she's incontinent you said?) or he's trying to protect her from people or situations that might upset her.
     
  14. Beate

    Beate Registered User

    May 21, 2014
    11,694
    Female
    London
    #14 Beate, Jul 15, 2014
    Last edited: Jul 15, 2014
    Her sister is 70 so her husband might be the same age or older. To be honest, it's probably been drilled into him form an early age that as a man he has to provide for the family so he thinks he his the one to care for her and is too proud to admit he can't cope.
     
  15. Charlie Bichon

    Charlie Bichon Registered User

    Apr 2, 2013
    4
    Try to see it from his point of view......

    I appreciate the perspective of your first paragraph and will keep it in mind.

    Re your second paragraph and third, I wanted to move to England temporarily to help take care of my sister, and was rebuffed in no uncertain terms. I stay with my bil and sister when I'm in the UK, and get up at night to put dry sheets on the bed, help with toileting issues, clean up diarrhea, put my sister in the shower to get her cleaned up. I do all that my bil does, but only, of course, for 3 weeks at a time. Because I know what he has to do, I have begged him to allow someone in to help. I have offered to pay for a cleaner. He absolutely refuses to take a day off, never mind 2 or more. He refuses to let me take my sister to Alz. meetings. I've massaged her feet and back and suggested he do the same thing, as it is pleasurable for her, but as far as I know he doesn't do this.

    Your suggestion to have a joint meeting with the GP is excellent. I wish I had thought of it when I was in the UK in May. I'm not sure that my bil will agree to going with me, the next time I'm in England, but I'll suggest it.

    You know, one of the problems is that my bil may listen to what I have to say, but he chooses whether or not to act on it.

    As far as your third paragraph goes, I've done it, more than once, more than twice, more than thrice, actually.

    My sister has only recently started have incontinence issues, so that wasn't a problem until the last 2 months or so.

    I will re-read your first paragraph, over and over. There are some real truths in it, thank you.
     
  16. Beate

    Beate Registered User

    May 21, 2014
    11,694
    Female
    London
    I wish I'd said it in better English then!

    To be honest, it sounds like you have done just about everything already to try and persuade him but he is a very proud, stubborn man. It must be so difficult to try and help from afar. The council here offers Health & Wellbeing checks for carers, do you think he could be persuaded to make an appointment? Or could you ask his GP to send him a letter inviting him for an annual check-up in which he could subtly ask about his situation? Probably not much use either. There is so much help around if one wants to access it (carers assessment, Day Care, sitting service, telecare etc.) but what to do if one refuses?

    I notice you have given practical help before, does your sister receive Attendance Allowance and are there LPAs in place? If not, you could maybe help with those forms? An LPA can be filled in online these days. Just thinking out loud.

    I really feel for you all.
     
  17. Charlie Bichon

    Charlie Bichon Registered User

    Apr 2, 2013
    4
    Lpa?

    Thank you for your concern. I'm sorry, but I don't know what LPA stands for. If it's someone going into the house to help, then my bil will not accept. Yes, my sister receives an Attendance Allowance.

    I'm feeling calmer now, and after reading all the posts, recognize that staying in bed until afternoon is not necessarily bad, BUT I am still concerned that my sister doesn't get her pills earlier in the day, especially if she's awake. I know my bil is doing his best, but I don't understand why he won't give her the pills at the prescribed times. I will try to speak with my doctor about this, to get a sense of how important it is.

    Thank you all, for your input.
     
  18. Beate

    Beate Registered User

    May 21, 2014
    11,694
    Female
    London
    Lasting Power of Attorney. There is a financial one and one for Health & Welfare:
    https://www.gov.uk/power-of-attorney/overview

    It really depends which pills they are and when they should be taken. My OH has three different pills of which according to his dossette box instructions, two should be given in the evening and one in the morning. The one in the morning is Donepezil for Alzheimer's but I have read it's better to give in the evening so that's when he gets all his pills. The other two pills are for high cholesterol and for incontinence, and I have read here of people who gave the incontinence pill in the morning which resulted in almost dry nights. That didn't work for me but what I am trying to say is that I don't think it's always terribly bad for pills not to be taken exactly when prescribed - but do speak to the doctor about it.
     
  19. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    1,085
    Brazil
    #19 BR_ANA, Jul 16, 2014
    Last edited: Sep 5, 2014
    When I lived with and cared to my mom, it was hard to trust her care to anybody. I had to control her meds, her bills, her GP appointments.

    Lucky you BIL has his sister.
     

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