1. lizzie 2

    lizzie 2 Registered User

    Mar 18, 2008
    2
    hi,i am new to this forum,i am trying to gain some knowledge.my auntie has been diagnosed with dementia,her husband has not been caring for her properly.it seems she has been trying to get to see my mother for a while but her husband wouldnt take her,she can hardly walk.any way he finally brought her to my mothers house,she was in a terrible state not only mentally but she was very dirty and ill.my mother called doctor in to see her,because her husband didnt want to.she was finally admitted to hospital,she was dehydrated suffering a uti,and refusing to eat or drink.this has been going on for six weeks.through myself visiting her in hospital i guessed it was dementia.the problem is her husband has been trying to discharge her against the consultants advice,he had lied to her children and not mentioned the diagnoses of dementia.he has been abusive to my mother and i just for showing some concern,he has told us to stay away from her house when she comes home,can anyone tell me if he can do this thanks
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Hi Lizzie and welcome to Talking Point.

    You've raised a very difficult subject, and one which probably has no answers only more questions. Caring for a spouse with dementia is a uniquely challenging operation. Over the years, most husbands and wives become "units" and tend to resist outside influences. So when one of them falls ill the other may do their very best to keep "outsiders" out, particularly if the illness is something like dementia. The well spouse may try everything to to protect the ill spouse, even when such protection (such as refusal of outside help, or refusal to push such issues as regular washing etc) is for the spouses benefit.

    In other words this counter-productive behaviour may be coming out of love, rather than neglect. Which is not to say that you shouldn't try and get through this barrier, but you do need to recognize where it's coming from. You say there are children - what do they have to say? Also, and this may, probably isn't, the case, but you should bear in mind that it's not unheard of for both spouses to have dementia, so it's possible he isn't rational. Mind you, having had my own experiences with hospitals I'm can't say that it is always a bad idea to discharge someone against consultants advice - hospitals aren't on the whole great places for dementia sufferers.

    What I'm trying to say is - if you approach him in an accusatory frame of mind he will almost certainly reject any help. He might reject it anyway if he feels that you are judging him. The fact of the matter though is that no one can be expected to takeover the long term care of a dementia sufferer without outside help, even if that help is just to occasionally give them a spell of respite so they can take a break.

    It will depend on family dynamics - some people will only except help from family members, while some will only allow "professionals" to provide that help. Someone is going to have to help your uncle find the support that he can live with, otherwise they're both going to end up in hospital.

    I'm moving your thread to the main support area because I think you'll get more responses there.
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Lizzie, welcome.

    It's a difficult situation, as are all family relationship problems. It so rarely happens that everyone sees eye to eye about the best way to care for someone with dementia.

    The first thing to recognise is that your uncle as primary carer has the right to make decisions. If you think your aunt is in danger from his neglect, you could contact social services, but that would be sure to alienate him further.

    Could you talk to your cousins? you could discuss the situation and try to work out together a way to help. He might find it easier to accept help from his own children, or alternatively they might persuade him to accept help from SS.

    But I really think you and your mum need to back off for a while. Your uncle obviously resents what he sees as interference, though we can see that you are concerned for your aunt's welfare. Any pressure from you and he could well fall out with you for good, and you would not be able to help at all.

    Just let him know, perhaps through his hildren, that you want to help, and are there whenever he needs you.

    Good luck,
     
  4. zoet

    zoet Registered User

    Im so sorry you are going through this, and obviously I dont know the whole story, I can only give my opinion....and its this....I think he's scared. I think he's scared to death. I think he is struggling to cope and he doesnt want to face the truth. I think you are making him face it and he doesnt like it. I feel for you all. Coming to terms with something like this in a partner must be absolutely heart breaking. Try your best to offer support, despite the abusive rejection. Try and empathise as much as you can. Imagine if it were your partner going through this with you.

    Its little comfort I know, when you are so worried, but give it a little time.
    Offer your support and friendship....and KEEP offering. Offer practical help if you can. If they are struggling so badly the pressure must be huge. Please try very hard to be patient. I suspect when he finally accepts the truth things will improve. Men especially can be very stubborn and proud when it comes to asking for, or accepting, help. (Sorry blokes....but you ARE!) Maintain contact in a GENTLE and caring way. Write letters to your aunt, send cards and pictures. SEND A CARD TO HIM TELLING HIM ABOUT TP....its the BEST advice you can give him at this point! Take care.
     
  5. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Lizzie, firstly, may I say it sounds like your auntie's husband (I take it he is not your uncle?) is in need of a lot of help himself. It is not appropriate to have people denied their rights to basic care, hygiene, medical help when they clearly need it - let alone social contact......... but you say there has been a diagnosis? In which case your auntie's husband must have been party to securing that? So he is not neglectful? Perhaps just now in denial and very much in need of help and support himself?

    I would be contacting the social work team at the hospital first thing and explaining the circumstances and your concerns (which you can do in total confidence) and ask them to support both your auntie and her husband if it is appropriate for your auntie to be discharged to his care ........I am very much with Hazel's sentiments .... the situation needs to be handled in such a way as to not cause further alientation ....... but there are ways to 'back off' without actually backing off .....

    Of course, we don't know the full picture ... I know from my own experience - where 'family feuds' go back many years - the handling of specific family dynamics is the last thing we need on top of the concern for the loved one who is suffering....... hugs and empathy on that score ......

    Please let us know how you get on, Karen, x
     
  6. lizzie 2

    lizzie 2 Registered User

    Mar 18, 2008
    2
    hi and thanks to everyone,it is a difficult one.the husband has got alcohol problems and he is a diabetic,his sons have tried talking to him and they have asked me for my advice because i am a care manager for people with learning difficulties,but i dont usually come across next of kin problems.everyone of his close family are in agreement that he cannot cope and are very annoyed at him for not taking her to the doctors many many months ago,and not washing dressing and making sure she was cared for.i have already adviced them to contact social services and have a family meeting ,all i can do is offer my help.i thought i would post my queery to find out other peoples experiences to pass more advice on to the family.week by week the situation is worsening,the hospital staff are complaining about washing being left for days on end and my auntie not having clothes,i took some home last week only to be abused by the husband which he has done to both daughter in laws also.as you can imagine we are all tip toe around on eggshells.my main concern now is that my auntie cannot stand and is now confined to her bed.i think this is due to her not eating properly for weeks and also the ward has been closed twice with norovirus.none of the family know how she is doing health wise because the husband wont let the nurses discuss her problems even with her sons as he is her next of kin. all we can do is hope she becomes a little more stronger and gets back on her feet.thanks again to everyone love lizzie
     
  7. EmJ

    EmJ Registered User

    Sep 26, 2007
    230
    Scotland
    Hi Lizzie

    It is a difficult situation for everyone involved. It's difficult to comment on really because I don't know all the facts. But all I can go by is my family's experience when my granny had the first signs of dementia.

    Intially she would refuse to change or wash. The clothes were familiar to her so it distressed her if we tried to change them. She wouldn't really accept extra help and refused a carer. All we could do was to try to find ways to work around the situations. e.g. We would wash the clothes at night so they were clean for the next day. Possibly to someone looking in, it may have looked like we were neglecting her but dementia creates many complexities which need careful thought.

    Sometimes it's difficult for anyone to accept what is happening whether it be the person with dementia or those caring for them. My family all take on a supportive role and delegate different jobs and my granny is now happy to have the help. You need to have patience and time.

    Everyone is different and need their own space and time but there is a point where you have to accept for the sake of the person you are caring for that you need to do something. They are the most important person and their health and safety is paramount.

    Try getting one person who your relative feels comfortable with and get them to talk to him. Some people may be frightened that if they admit they need help they may be seen as not able to cope with the care consequently their relative will be removed from their care. Reassure that you want to work together to help to make sure your relative is in her home safe with appropriate support and also that he is supported too.

    Take care,

    EmJ :)
     

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