Family - Do they care? Why won't they listen ?

Discussion in 'ARCHIVE FORUM: Support discussions' started by DaisyG, Mar 20, 2006.

  1. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    I've just had a REALLY BAD weekend with mother - in - law.

    She has NEVER come to terms with the 'Multi Infarct Dementia' diagnosis for her son. Nor have his MANY brothers and sisters.

    Showing them 'Professor and Consultant' letters does not work.....
    They have ALL got it wrong, and there is nothing wrong with thier son/brother.


    Every day I get accused of neglect and abuse by my husband ( for allegedly not feeding him, helping him have a shower, withholding medication)......


    He 'complains' to his family when we (rarely) get to see them, and their first and ONLY reaction is to ask why I haven't done these things for him !!
    And accuse me of endangering his life further, by not giving him medication.....


    I don't understand why they don't believe me ..... and believe him instead.....
    It really upsets me....


    We have been keeping several 'diaries', that are signed and dated every day, as proof that I am not in any way neglectful. Signing 3 x a day for meals etc.....
    I apparently have learnt how to forge signitures... and family believe him !!!


    Only someone in 'our situation' can understand what we are going through.
    Seeing a family member for 1 hour here and there does not give a clear picture of what it is like to care for someone with dementia.


    I feel so alone.


    Does any one know if my husband were to 'push' the abuse / neglect accusations through the Social Worker.....where do I stand , and who will believe me?


    (I've 'more than a feeling' that my 'family in laws' want me OUT, so they can claim our home for themselves.
    Can't explain here, ......but several family members have had words with me (BULLIED ME), about leaving ).

    Any advice PLEASE?????


    DaisyG
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi DaisyG

    what a dreadful situation. It seems that families accept the situation and then either help or they walk away - or they won't accept it.

    There's a simple solution, but you may not get it to happen.

    Have one of them move in to be with him for a couple of days while you take a short break.

    Situation would probably then be sorted.
    Any chance of getting them to the consultant who can explain? or put them on Talking Point!

    This is not uncommon
    To believe you is to realise that he is very ill. It also means that they might need to do something to help
    If you think about it... you could be forging things, from their point of view. The best bet is to put them in your place for a time so they can experience it. And yes, it needs to be a couple of days at least, ideally a week.

    You might ask one of them "isn't he worth that much of your time?"

    Best wishes
     
  3. zan

    zan Registered User

    Jan 4, 2006
    96
    staffordshire
    Daisy, I have to agree with Bruce that it would be a good idea to give yourself a break and let your husband's family see what things are really like for you and your husband, if in any way that is a possibiltity for you.

    His family seem to be contradicting themselves if they say there is nothing wrong with your husband and then say that you are not looking after him properly. If he does not have the dementia then he does not need looking after.

    I wondered how old your husband is. Does he and yourself have any kind of respite breaks. Could he have a weeks respite somewhere ? As well as giving you a break, this would mean that other people would know just what help he needs and what you are going through each day.

    You are not alone. Once you join this site you become part of a large group of people who understand. You know what a wonderful but difficult job you are doing, and so do we. Don't let the people who should be supporting you but instead are letting you down get to you. Zan
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Is the home owned by the two of you? Is it in joint names?

    How would they be able to claim the home?
     
  5. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Talk about How to make an appalling situation worse!!

    I agree with Bruce's first suggestions. Do it - don't think about it, you'll weaken - just do it.
     
  6. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Family Problems......

    Dear All,

    To answer some questions.... I'm 38 and husband 45....


    Yes, I know I really need a break, and we ( I am ) are currently in the early stages of talks with our Social Workers.


    Depending on the day ... my husband will or won't agree to going to a respite centre.
    He has declared that "I'm NOT going to DUMP him in one of those places..."
    Or.... I can have respite..... as long as he can come too......!! (work that one out !!)


    Or.... (don't laugh) ... he'll go to respite as long as it has the following...
    satallite TV in his en-suite bedroom... room service - for snacks etc... , 24 hour access to the kitchen...... someone to help him wash shower/dress at least once a day.... someone to do his washing..... what kind of stereo system do they have in the rooms ?
    And the best for last ..... As long as I visit him every day...


    I've looked after my husband for over 2 years now post stroke/s ..without a day off, and I am seriously tired now....


    The MID is a new-ish diagnosis..... Though probably 2 years-ish....


    Some days it's mental as well as physical tiredness that I'm sure you'll understand.


    Family are terrible, and have ALWAYS been this way since his first stroke.
    They chose NOT to help in any way in the beginning, and have certainly stuck to their plans.

    They never see him in a 'true light' as I see him, as they only ever pop in for an hour or so at most.

    They have only ever seen him in a repetative mode, and mildly confused....where am I ? ....... What's going on ?....


    They won't even ring...or return phone calls.....



    The stroke side of things has been challenging enough... Mentally and physically.
    I'm petite.... and somehow I'm able to 'pick up' (when he falls over ) ... a man
    1 and a half X my weight...
    (Won't allow me to call for help.... says I must do this myself !!)


    I not only have the Dementia problems... but the Stroke problems too.


    I know for sure that his FAMILY WILL NEVER EVER HELP..... EVER !!!


    They don't even think anything is wrong with him...Their behavior is bizzare...


    They won't listen to me or the Consultants.... NO ONE !!!


    His mum has seen him in a 'full status seizure'.... and was arguing with me about calling for an ambulance !!
    (We ALWAYS need 999 assistance, as his seizures go on for 20 + minutes)...
    Mother In Law said he was in 'God's Hands', and to leave him alone.... !!!


    *****************************************************************

    Brucie,

    Our 'home' is in both names.

    When my husband was in hospital over Christmas, with yet another Stroke, two of his brothers were 'asking' me to leave him... there and then...

    They asked me so sign papers to 'make it easier on myself'.
    They wanted me to hand over the control of all our 'finances' to them !!!
    I refused.... and thus the 'bullying - on - the - phone' started ......



    (I think that they may, in the future use MY 'medical history', against my husband and myself.....
    I've had Brain Cancer many years ago.... and I think they may use this as a weapon ....on the grounds that I am not 'mentally capable'.... )

    Incidentally, when had my Cancer.... mother- in -law didn't believe the Neuro Surgeon either !!! .... or the Brain Scans !!!


    You can see I'm in a bit of mess withh my family (In laws only I might add)....


    Nice to hear support from other people.....


    Take Care..

    DaisyG
     
  7. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Daisy, that's AWFUL. I know families can be impossible sometimes (& not always the Outlaws!) but it almost sounds as if it's got to the stage where you could take out an injunction against them for harrassment. (No, I realise that suggesting it would be impractical, but then again ...)

    Has your husbands aggressive posture always been like this, or just since his illness? Or just since his family have pushed him that way?
    (Not meaning to upset you here, but his attitude is certainly not helping, is it)

    Jeez, it sounds as if it would almost be worth breaking a leg to get yourself out of it for a few days.

    Phew, for once, words fail me right now :mad:
     
  8. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Family - Do They Care ?

    Hi Lynne, (and everyone who has read my family 'issues'),


    'My family', as well as my husband and I, cannot begin to understand how the rest of the family have reacted to our situation.


    I've a couple of MY relatives 'down south' - Devon and Cornwall, and the rest are in OZ and NZ.


    Before stroke/s .... WE were the ones who ran around and helped out everyone ... when called on .....we were always there.....
    We've helped people pack and move house.... baby sat.... taxied everywhere...
    Decorated houses... put up shelves ......


    BUT when it comes to helping us out.... NOTHING !!!




    Since the strokes....and....dementia, my husband is the COMPLETE OPPOSITE to what he was.
    He could NOT be any different.

    He was kind, generous, patient, loving, giving etc ... etc......
    Now he lives in 'his own little world' where he expects me to jump when ever he says so.

    I get accused of all kinds of things that are so far from the truth it HURTS.


    It's hard to live every day with insults and accusations, and really draining.



    I know I'm in need of a break....

    All I want (like many other carers) is REST and SLEEP.
    I don't want fancy ' things' ......

    I want to go to bed when I WANT to .....
    Get up when I WANT to...
    Eat what I WANT to.....WHEN I WANT TO.....
    Go out when I WANT to.... (without having to arrange for Crossroads to babysit)
    Have a long bath ....when I WANT to.....

    I want to not feel guilty for having some ME time....


    If only life were so simple.....

    DaisyG
     
  9. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    Daisy, I can't think of much to say to help but I wanted you to know that you're not alone. I can't believe that there are people who are capable of being so ignorant and hurtful. Please get as much support as you can from your UK family and friends and when your in laws start talking nonsense or trying to bully you, TELL THEM that you are not going to be bullied and you don't appreciate their lack of support. Easier said than done I know, but it sounds like you are doing a fantastic job and coping so well with so little support or time off.
     
  10. KaC

    KaC Registered User

    Feb 26, 2006
    32
    surrey
    Daisy,

    just to say thinking of you and to echo katy44's message and thoughts

    karenx
     
  11. Michael E

    Michael E Registered User

    Apr 14, 2005
    618
    Male
    Ronda Spain
    Daisy G hi,

    Cannot express how sorry and sad I am hearing your story... You really have to look after yourself - for everybody's sake as well as your own and you cannot go on like this for too much longer I think.

    It would appear that AD suffers do go through stages of aggression and unreasonableness - but it is not always constant.. I had some real major problems with Monique - my wife - and got to the end of my tether and snapped. I got very very angry with her - told her to make a clear choice - either help me or I was out of it ... Now I am not too proud of that incident but it certainly did change things...
    I do not believe that AD sufferers are ga ga.. They can be spoilt, greedy, demanding and thoroughly unpleasant - like 'real' people can be - and most of us would not tolerate that sort of behaviour or interaction from anyone else for long. I am of the belief that if Monique wants to make my life a living hell (for reasons of character) then I will giver her the options again... Actually these days she is so dependant and loving. I cannot imagine how she was physically and verbally abusive when I lost it. There is no need to treat them with kid gloves - except with the things they clearly cannot help - and that list is long ...

    It seems fairly 'normal' for family to 'want out' of the situation and yet be full of themselves with criticism and condemnation. My French brother-in-law behaved in exactly the way you are describing your 'in-law' family. He did nothing to help me - I am English and did/do not understand the SS system here in France very well. I said to him that if he was so good at it all then I would go sailing and he could sort out the 'caring' problem... Finally I got so fed up with his 'attitude' that I asked him to '**** off'. Easy for me - I am a reasonably big bloke and can appear very persuasive if I want.

    For you it's not so easy - you are suffering from harassment and at a guess I would say are clinically depressed - and why not? You need the doctor for yourself and the doctor needs to find a department of the Social Security to protect you.

    There must be a way of getting help from the 'system' in this situation.....

    Is the GP a friendly sort? Could you make an appointment with him/her and take this tread with you? Show the GP what the problem is - ask for some help? If you can print out this tread it might be helpful as frequently it is hard to communicate, verbally, in a reasoned manner when the stress hits home!

    Take care of you - frankly if it all gets too much - get out! You are very young to be ruining your life with this problem. The only reason for looking after someone with AD is because you want to. The moment the 'rewards/conscience/lost love' are no longer a reason to do it - then go..... The Social Security system will pick up the pieces - the rest of the family can do whatever they want and you can go out there and get your life back....

    Oops! Women are from Venus and Men are from Mars and I have a feeling that this is a Mars post - but - do not stay unless you really really want to.

    love

    Michael
     
  12. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Daisy,

    This must be really difficult for you. It is strange (and a real shame) how some people react when the things they took for granted (i.e. you running about helping them out) cease.

    I would personally stop trying to 'prove' to your in-laws that your husband is ill. If they cannot accept it, then they will have to deal with it themselves. You shouldn't have to be proving anything to anyone! Your husband's accusations may be hurtful, but that is his illness talking. Your in-laws accusations and bullying seem to be based on ignorance and mis-understanding or else they may be just plain spiteful (or both). Can you do your best to avoid (and ignore) them as much as possible?!

    Your husband being the complete opposite to how he was is certainly not unusual with dementia but it does grind you down, and you sound desperate for a break. I would also not mention respite to your husband any more, just start arrangements for it to be put into place and hopefully he will start going on a day when he is agreeable!

    I agree that your priority appears to be getting some support and I hope you will try to find all that you can - you say that you are in the early stages of talks with Social Workers, I do hope they can help. Thinking of you,
     
  13. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    I'd say that is good Mars advice Michael !!

    Daisy, can you change your phone number to unlisted, and cut them off entirely?

    Do take Michaels advice in understanding that you do not have to take abuse from your AD loved one. They are like spoiled two year olds and if you let them get away with it, they will work you. I've had to set my Mom straight a time or two, she can be a brat at times!

    I'm so sorry for your hardships. Do take care and stick to you guns! Tell them all to take a hike.....or I can think of other more appropriate but perhaps not nice things to say!

    Debbie
     
  14. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    #14 Amy, Mar 20, 2006
    Last edited: Mar 20, 2006
    Hiya Daisy,
    I agree with Michael, it is important to get you some extra support. I would suggest the GP to begin with too, but get whatever help you can.

    Secondly, maybe you need to seek some legal advice, to find out about your home and finances; but certainly refuse to sign anything that the family might suggest without first showing the document to your solicitor, or saying that you want him present. Hopefully that will stop them in their tracks; and if you have the pat reply "I need to talk to my solicitor first" ready, then you don't have to even enter into conversation with the brothers.

    Thirdly, if it isn't possible to get your husband into respite at this point, then there are places (I think) where you could both go and stay, but where you would get support with the care. This isn't ideal, but anything is better than nothing.

    I would be reluctant to let them move in and you disappear for a week, just in case they tried any funny business. If you were going to do this, I would make sure that your GP and Social Worker were aware of the arrangements (I'm just wondering whether there could be accusations of desertion or neglect); if the GP etc knew that you had arranged a break and relatives simply to care for your husband in your absence, then they would be able to counter any accusations.

    Maybe Michael's suggestion of saying to your husband "I'm not putting up with this" is worth trying. Why are you having to show your husband that you are not neglecting him? I think that I would talk to the GP; tell him about your husbands accusations of neglect and your concerns; maybe the GP could weigh him at regular intervals (my mum is weighed monthly in the Nursing Home) rather than you having to get him to sign to say he has had three meals. Talk to the Social Worker and CPN, your husband and his family seem to be playing on your fears. Bring it out into the open, show that you have nothing to be afraid of.

    If your husband's behaviour is due to the strokes and dementia, then there may be no reasoning with him about how often he is fed, and how well he is looked after. So I think I would try and avoid the conversation. Don't play the game of having to prove to him that you are caring for him; forget the diaries.

    Yes Michael, Men are from Mars, Women from Venus, but it is a spectrum, and not all women are totally selfless, caring, nurturing individuals, purely driven by emotion. So
    , I agree, because if you get to that point, then you are nolonger the right person to do the caring, and the most loving thing to do would be to find an alternative means of caring for your partner, parent etc. It is not a failure, it is not something to feel guilty about, it is just an acknowledgement that "I have done my best in the situation that I am in, and can do no more"

    Right, said my bit. Better go. You are not alone Daisy; there's always someone here to stand alongside you.
    Take care.
    Amy
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Daisy

    I don't want to add to your problems, but sometime you will need to set up an Enduring Power of Attorney, if you have not done so already.

    The problem with that is that when you do it you would need to inform his family of the EPA.

    This is why it would be best to try and educate them, so they understand and do not contest it, though if you do they won't have grounds, far as I can tell.

    I'd certainly not permit them to have anything to do with your accounts... sounds very weird to suggest that.

    From your messages on TP, I don't think the family would have any grounds to contest anything on the basis of your past medical history.

    Another question just came to me - do you each have a will made out?

    Hope this hasn't added to your concerns, but forewarned is.......

    Keep on posting here! We're on your side.
     
  16. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Daisy, just want to add my sympathy..

    If I were in your shoes I would print out this whole thread, give a copy to your GP or CPN or Social worker, and send a copy to the members of family.

    Then I would cut off all contact with them, after all they are no help to you as things stand.

    If they do get back in contact, ask them to house sit, with hubby, for 3-4 days.
    Nothing can be worse than the situation you are in at present.

    (Yes Brucie is right about the EPA, BUT they do not have to be involved until it is registered, and then have to have very valid reasons for objecting) I can PM you about this as I have been in that situation.

    Chin up sweetheart, and thanks for sharing your troubles with us here on TP.
    Maybe we can be of some support to you.

    Love Connie
     
  17. Shakey1961a

    Shakey1961a Registered User

    Nov 7, 2004
    111
    Southport
    I've not really read through all the messages properly, but did see the bit about you having to pick him up and he's bigger than you.

    Well... when he falls call the ambulance. If other things happen call the ambulance. Just make a nuisance of yourself, then the authorities will take notice and hopefully so will your in (out?) laws.

    My mother always helpd out when her parents were ill. She had 2 sisters (well still has) and they never lifted a finger. They've not got Alzheimers and mum has!

    You can't do this by yourself anymore.

    Book a holiday and tell you relatives that they're going to have to make arrangements to look after him as you're off for a long weekend.

    I'd also see a solicitor about the housing situation.

    You can't carry on like this or you will go under yourself. Then they'll have to do something about it.
     
  18. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Thank You

    THANK YOU all so much for your kind thoughts and advice.....


    To answer some of your questions....


    YES, we do have WILLS,, but they need 'adjusting' as they are old....
    What's the easiest and cheapest way to do this?


    YES, I know I'll have to do the EPA thing really soon.
    Want total control for myself... NOT his family.


    GP not really approachable... He's OK but not overly friendly.
    He's the only GP in the surgery. Other local surgery FULL.
    Practice Nurse OK though.
    She knows what I'm going through... Mostly.....not all.......


    I've told the NEUROLOGIST, PSYCHOLOGIST and STROKE DOCTOR all about the accusations of abuse and neglect + + +
    Both in 'person-to-person meetings' , and also by E-mail.
    Get on really well with them all, as well as their long suffering secretaries !!


    They are keeping in regular touch with me to see if anything can be done with his 'medications'. .... and behavior and aggression.

    Difficult to sort out changes in medication easily, as he nees to be covered for his STROKE side of things...... the EPILEPSY side of things....the NEUROPATHIC pain side of things.... then MID....



    Thanks for letting me rant and complain....

    Weekend was particularly bad with M-I-L with her complaining about everything...
    And I mean EVERYTHING !!!

    Towels too fluffy .... Milk too cold in fridge ... Plates too heavy...
    Cups too big.... No tablecloth ..... Pillows too high ..... Quilt too heavy....
    Water pressure too high in shower.....
    That was just ONE NIGHT !!!


    Smile..... you can't have a MIL as picky as mine.....

    Take Care

    DaisyG
     
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Why do they need changing? I'd suggest that if they are basically ok - that is, your stuff goes to him, his stuff goes to you - then why change it?

    Best to leave as is in case family contest it. They can't contest a valid will drawn up when things were ok.

    Don't forget, he needs to sign a new will, and in his current condition, would he? And could that in itself be contested? Likewise an EPA by the way.

    "it's not that I'm always negative... I just don't like unwelcome surprises and try to anticipate them..."
     
  20. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    Stone me, Daisy, you have got a tough situation. Is there a Carers' Group near you? Or Alz Support or Society branch? Your GP, or if he is not helpful the nice practice nurse, should be able to supply you with all the possible sources of help, and when they have ask for help from everybody. That's what they are there for, and if you don't weep and wail and gnash your teeth you don't get priority treatment.

    You certainly should be able to get respite care - whether you use your horrid inlaws for this is up to you, but if you sever all links there still are respite beds, and home care people, who can help.

    You absolutely must have some time for yourself. It's not selfish, or uncaring, it is a complete necessity to keep yourself sane and therefore able to care for your husband.

    And let's face it, assuming he is not skin and bone or covered in filth, it must be obvious that you are feeding and washing him.

    Living with dementia is not going to be fun, but you certainly don't need, and should get shot of, all the other hassles.

    Rosalind
     

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