What is the best thing to do?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Jodilynn0303, Jul 30, 2007.

  1. Jodilynn0303

    Jodilynn0303 Registered User

    Jun 26, 2007
    11
    Leicestershire
    I take care of my husbands Uncle who is 88 and has been diagnosed with Dimensia. I take care of him because he lives with my husbands mom and she works full time and they don't want to put him in a home. I am a stay at home mom to my 4 yr old son so I was the best candidate to look after him because I am at home. My issues are this: I get paid for looking after him but I get paid to look after him from 10-4 everyday, but I actually look after him from 7-4:30 because he can't be left alone for a minute or he wanders, or does abnormal things... eating glue etc., So anyway... I dont care about the financial part of it I want to help my husbands family out they have taken care of him for 40 years as he has never been married or anything so he came to stay with them all those years ago while he had malaria and then never left. So I try to have patience I truly do... but on days like today, I went upstairs to check on my little boy who was playing upstairs and heard the front door open I came down and said Harry quick shut the door cuz the dog will get out (I have a little yorkie). He said he didnt see any ******* dog and wanted to leave. So he went past me and tried to go out the back door. (He has a note that tells him where he is, and for how long during the day etc. ) So I told him to please have a seat my husband (his nephew) would be home soon to take him home. He yelled 'well he will have a long way to come then' and tried to go back to the front door so I stopped him not knowing where my stupid house key was to lock it ... :( So anyway I tried to tell him that he would be going home soon he was screaming profanities at me and pushed me hurting my back ( I can barely stand up now as I had back surgery there years earlier) not his fault I know but it is so hard. I am stressed out with a sick son (he has a bad cold) and arguing with Harry all day long. He doesnt believe anything I say. I just can't do this. I don't want to let my husbands family down. We are moving to the USA (I am from there) in about 6 months and they have said as soon as we leave they are putting him in a home because he is getting so aggressive and last week he got physical with my sister in law who is 9months pregnant and she told him to be careful because she is pregnant he told her it is her fault not his. I feel bad for him, and when he gets me so mad I could cry I feel so guilty for feeling that way. If I say to my hubby's family I can't cope with this they will put him in a home now and it will be all my fault. Please help me how to cope. I just don't want the guilt anymore. I get so depressed at the weekend knowing I have to do this all week and am stuck in the house that I am going into a depression. You can't take him anywhere he throws fits and fights me... so I am stuck in the house locking him and I in all day long :-(
     
  2. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Jodilynn,

    Can you consider a day care centre for at least a day or two a week to take the pressure off? It sounds like you are having a terrible time with this and needs some help before it gets out of hand. Have you considered contacting social services or your father uncle's GP for some advice or is the situation too delicate? There are so many ways that you may be able to get help or at least some respite, particularly if he is being agressive to you.

    Another option is to phone the confidential alzheimers helpline to see what is available in your area and for your situation.

    http://www.alzheimers.org.uk/About_our_work/Contact_us/helpline.htm

    Phone: 0845 300 0336

    Whatever you feel, don't leave it too long, there is a lot of help out there and it sounds like you need it.

    Kind Regards
    Craig
     
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,137
    Toronto, Canada
    It's not your fault

    Maybe your uncle does need to go into a home now. Certainly he would need to have his medications looked at.

    If the family will be putting him in a home in 6 months, they are probably looking around now or they should be. Do not feel guilty, you have to protect yourself and your child. I know how incredibly fatiguing it is to deal with an aggressive person.

    Is it at least possible for him to go to a day centre for a couple of days a week? You really have to have a long talk with your husband and the family. If you cannot cope, you shouldn't have to. Please, please, please do not feel guilty, you have nothing to feel guilty about.
     
  4. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Hi Jodilynn

    You sound near breaking point and probably need to sit down with your family and explain that your uncle is becoming too difficult for you to manage, that the pressure is putting your health at risk, and possibly the safety of your young son. Unfortunately, as the illness of demetia progresses, it is not unusual for the person to become aggressive and too demanding for one person to cope with in a domestic setting. It is a this point that full time care has to be considered. Do not feel guilty about saying that you can no longer cope. The decision about your uncle's future care is down to his immediate family but they cannot expect you to continue when it is affecting you so badly. You have been a fantastic support for him and them but I think you need to put yourself and your son first now. Just my personal views, of course. Could you start by talking to your husband about what is happening and how stressed you feel?

    Blue sea
     
  5. Louise.D

    Louise.D Registered User

    Apr 13, 2007
    68
    Essex
    Hi,

    I don't mean to be rude but you are mother of a 4 year old looking after a dementia sufferer with obviously challenging behaviour. If your family expect you to do this then they are unreasonable.

    Social Services would take a very strong stance about a violent person with a mental illness being in the same house with young child . They did with me and my mother was not agressive or violent. I ended up putting my mother in a residential home. If I had not done so then they would be put on the 'at risk' register and quite rightly too.

    If he fights you and is agressive towards a pregnant women then he has obviously lost all idea of acceptable behaviour. Care homes know how to deal with this as they have had training and a wealth of experience. In my mothers case, she is getting better care and I am spending quality time with her rather than having to deal with the stress of looking after her and two kids.

    Remember, you have the next generation to care for.

    Good Luck
     
  6. Jodilynn0303

    Jodilynn0303 Registered User

    Jun 26, 2007
    11
    Leicestershire
    I talked to my husband about it today (during his work lunch he phoned) and he said he was really worried about me. The trouble is that he worries so much he stresses at work and then I feel guilty about that too! He is also having really bad problems at work and so I just feel bad now for laying it on him today. I called my mother-in-law (who the Uncle lives with) and told her about what is going on and she said started crying. :-( She is worried about my husband and this situation and said she feels bad. She is at home with a bad back and awaiting a phone call from the hospital to go in for back surgery) So she can't do anything she can't even drive right now she is in SO much pain. Anyway... they know he needs to go in a nursing home but I just don't want it to be because I can't cope. I have to just cope and that's it. I have to find a solution to make sure everything works out because otherwise I will make myself ill with guilt. Right now he keeps asking me when he can go home... even though he has a note telling him when. My son is asleep and I keep having to ask him to be quiet. So that isn't going over well. As he forgets 2 minutes later what I have asked of him. I just feel like if I say I can't cope and he goes in a home and dies or something how would I ever forgive myself? what if this was my father or something? I wouldnt want someone to give up on him.. though I would be the one looking after him myself I guess. I dont know... I miss the USA and miss my family and I just don't want to feel bad all the time. I feel guilty now for having my son around it too. :-( I suck.
     
  7. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,137
    Toronto, Canada
    Stop beating yourself up. You don't necessarily have to cope. If the family feels that he is at the stage of a nursing home, then that option should be explored and as quickly as possible.

    I don't want to be mean, but if he is going into a home once you move back to the States, and dies or if he goes into a home now and dies, what would be the difference? Nursing homes are not the horrible places they may have been once. You're taking too much onto yourself. As for making yourself ill with guilt, would you consider speaking to a professional regarding guilt? You shouldn't have to live with that guilt, especially since your husband and MIL seem to be so reasonable and understanding.
     
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    You most certainly do not suck :) You're trying to do and be everything for everyone and you've got lost in the shuffle. I wonder: have you seen a care home recently? They are not all places where people go to die - some of them (the best) are vibrant communities that offer both care and companionship to the vulnerable elderly. No, it's not your uncle-in-laws fault that he has dementia, but it's not yours (or more importantly your sons) either. One can understand the reasons he is agressive without wishing to be the person he is aggressive to. Guilt goes with the territory - no matter what you do you will feel guilty, whether that guilt is misplaced or not. Actually, I don't think you have any reason to feel guilt if it's your pushing that finally manages to get him into an appropriate living situation - it's clear that no one in the family is in a position to cope with him, so instead of feeling guilty that you can't cope, feel proud of taking seeing the situation clearly and recognising that the time for residential care is now.

    I think you have to draw a mental line in the sand and stick to it - at what point does his behaviour become unacceptable? Frankly, it seems to me he's already reached that point - once someone loses the inhibitions that have kept them in check the next time they lash out may be truly serious.

    Does he have a social worker or CPN? Has medication been tried to manage these agressive impulses?

    Best wishes

    Jennifer
     
  9. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Jodilynn,

    you are unlikely to need a nursing home if your uncle has dementia without nursing need. There are many specialist dementia residential homes which are much cheaper than nursing. Depending on your area, you may also find day care centres which will at least relieve the situation. Still best to call the helpline rather than guessing what may be available of you.

    You have got over the worse stage which is admitting that you need help - a lot of people wait way to long for that and the situation ends up a crisis.

    Your not giving up on him! Imagine how he'd feel if he harmed anyone.

    BTW - has anyone seen the GP for a diagnosis for your uncle?
    How about you, have you seen a GP to discuss the issue and your state of health.

    Kind Regards
    Craig
     
  10. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Hi jodilynn

    Have you thought about the situation form another angle? What might be the best for your uncle? It is not his fault he is suffering from dementia. He is becoming aggressive and potentially a danger to you, your son and other members of your family. This is not his fault either. If he were to hurt you or your son badly, you would feel guilty about not getting professional care for him sooner. This is an illness that caries guilt with it, whether you care for the person at home or put them into professional care. From your description of the situation I would suggest that you are too stressed and tired to be able to see the situation clearly. At the very least I would try to get some respite care for your uncle, a day centre or a temporary stay in a care home. This would give you and your family a breathing space to consider longer term options. I think your judgement may be clouded by the fact you will be moving to the USA in 6 months time. You cannot continue with this situation for another 6 months! You all feel stressed, understandably so, but the decisions and responsibilty need to be shared by you all as a family. It is better to get more help for your uncle now than wait for a crisis to happen.
    You sound such a lovely, caring person. It isn't wrong to say that you can no longer cope with things as they are - it could be the very best thing you can do for your uncle and family as a whole.
    Ble sea
     
  11. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    No Jodilynn, you don't have to cope. And you certainly don't suck!

    When the time comes that your own health is suffering, it is time to admit defeat. You have done all you possibly could, and more than many would do, even for more immediate family. Apart from your own health, you have your child to consider. You have absolutely no reason to feel guilty.

    What is more important, the safety and well-being of you and your son, or keeping your uncle out of care for what is at most going to be six months?

    Blue Sea's suggestion of emergency respite is an excellent one. I'm sure social services would agree that it is in everyone's interest to have a breather. I also agree that your uncle should have a review of his medication. Aggression can be treated.

    There's some excellent advice for you on this thread, I hope you'll take it.

    I couldn't agree more.

    Love,
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,847
    Kent
    Hi Jodi,

    Since you agreed to care for your husband`s uncle, his condition has deteriorated alarmingly, and now his own safety is at risk and he is becoming abusive.

    This is not his fault, but you cannot be expected to cope with this level of disruptive behaviour when you have a young child to consider.

    The suggestion of emergency respite is excellent. It would fill the gap, whilst your MIL is incapacitated and give the family a chance to look for a suitable residential place.

    If your uncle will be placed in residential care when you return to the States, there is no harm at al in bringing that date forwards.

    You have donw more than your share. You should feel proud of yourself, not guilty.

    Take care xx
     
  13. Ashburton

    Ashburton Registered User

    Feb 19, 2007
    99
     
  14. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,137
    Toronto, Canada
    Ashburton,
    Regarding your question, there's normally more than just one person available at a home, plus they can call on more staff members, plus there are drugs.

    I am well aware of this as my mother was very violent last summer and on a few occasions was drugged to the eyelids. As she injured other residents, it was unavoidable.
     
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Also of course sometimes one person (i.e the primary carer) becomes the "bad guy" in this situation. Plus many residential homes, particularly secure EMI facilities, are set up to remove or at least minimise the frustrations that can lead to aggressive behaviour.
     
  16. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Hi Jodilynn

    Have just read your post and have to agree with everyone else - you must not feel guilty! The illness is progressing and your Uncle's condition and behaviour are deteriorating - NOT YOUR FAULT. Your health is now failing due to the stress - NOT YOUR FAULT. If there are plans to find residential care for your Uncle in just a few months surely it would be fairly easy to bring the plans forward for all of your sakes. In the meantime emergency respite should be available to give you all some breathing space and time to make arrangements.

    Just remember how much you have already done for your Uncle - an early move into a home by a few months is nothing in comparison to your hard work so far. You have every reason to be really proud of yourself, as all carers do.

    Good luck to you all

    Liz x
     
  17. Louise.D

    Louise.D Registered User

    Apr 13, 2007
    68
    Essex
     
  18. strawberrywhip

    strawberrywhip Registered User

    Jun 26, 2006
    76
    kent
    Hi Jodie

    As everyone has said .. sounds like the time has come ...And ..although you say you are the obvious carer, I would have to disagree...you may be at home ..but with a young child . With an agrressive and confused male in the house, to just have to take yourself out of the equation and let the rest of the family sort the problem out. If he was at home with his wife social services would step in very quickly with other solutions.
    My mother in law, who was a sweetie, became aggressive and very un-co-operative as her illness progressed. My sister in law has yougn teenage children who saw the changes in her, and it was upsetting for all of them.
    You just need to explain to the family that he can`t come to you any more and another soution will be found.
    The problem with wandering ..becoming annoyed when they feel the carers are telling them what to do etc if very difficult.
    My hsband used to say ..in a few months ..in June, NJuly, November etc etc ....as family you wan a magic sign or moment to signify that the time has come .trouble is it will be difficult behaviour and they need to act now....there may not be places in Novbember anyway ..
    But you ..take yourself and your child out of the equation and let the rest of the family sort him out.
    Presumably you need time to pack up the house and sort yoursevles out anyway?
    Stay strong ...hand over the care good luck
     
  19. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #19 Margarita, Jul 30, 2007
    Last edited: Jul 30, 2007
    Seem that you all know he needs care home , but none of you have the courage to make that step forward in doing it , if you was really coping in a positive way ( hard being positive with the stress your under ) , your get respite put in place .

    putting uncle in respite give the whole family a rest , then go from they in finding care home or not , sounds like you all need that now ( respite )

    someone in the family has to be logic and realistic taking control of the situation , if you let guilt in that give you irrational thoughts , It gets in the way of thinking clearly logic & realistic so your busy going no where with guilt feeling , while every thing come crushing down on you , coping but not really coping .

    why has the family not had an assessment done , by social service for respite , if you don't mind me asking ?

    Or do family MIL think that they just want to keep it all within the family ?

    best of luck in coping in the way you want xx
     
  20. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi, It seems that all involved have reached the end of their tether,and, understandably so. You have done a great job so far and obviously you are all a very caring family, noone likes the idea of permanent placement, but, when the behaviour becomes to challenging it's out of your league, safety becomes paramount. You know that you have done your very best and you can't ask anymore of yourself, it's hard enough been there for a child and all their needs little lone a dementia sufferer with behavioural problems, no wonder your not feeling so good. Hopefully things will get sorted and take heart that when the dust settles and some normality returns you will see things more clearly. Taffy.
     

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