Advice and Help needed please...

Discussion in 'ARCHIVE FORUM: Support discussions' started by DaisyG, Oct 5, 2007.

  1. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    I’ve not been on TP for some time now, I’m struggling a bit more these days with my husband.

    I’d like to ask others opinions on the following…
    As my husband is becoming LESS able to use the CD player, Radio, DVD player
    (he cannot use these AT ALL now) he is ‘stopping me’ from using these as well.
    He is already getting more aggressive than before (we still have good and bad days), but on the whole aggressive most days….
    How can I get round these issues? If I try and use these ‘things’ he just gets angry.

    We have a small CD player in the kitchen, which he may or may not allow me to use on the day, it depends how he is feeling…. BUT he comes out to the kitchen and gets angry with me for disturbing him with the CD player (on low). This gets stopped on some days as well. (He pulls the plug out of the wall, as he does not know how to turn of the CD player).

    I KNOW its AZ, NOT him, but how can I lead a ‘normal life’ when he is stopping me from doing so?
    Spoken to CPN and Psychologist and all they say is for me to stay safe FIRST, and if that means ‘giving up’ certain things then I’ll HAVE to do it. No ability to ‘reason’ for SUCH a long time now. It’s getting far worse.

    Also he does not like me to use the phone …. Believes I am ‘up to something’…
    and the TV remotes are constantly being dropped thrown in temper as he can no longer use these either.


    Has ANYONE got any ideas how my life can be made easier with these problems?

    Recent assessment says he needs 24 hour care now. Managed to get a couple of extra hours from SS, to give me a break in the week, but feel like I need more on some days.

    Hope you can offer some kind of advice?

    Take Care
    DaisyG
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,568
    Kent
    Dear Daisy.
    I`m sorry things are getting even harder for you. My husband also has problems with the remotes and the radio and CD player, but luckily doesn`t mind me using them.
    The only thing I can think of for you is a set of cordless headphones. You can use them for the CD player and TV. Because they are cordless you are free to move around the room you are in.
    Hope this helps.
    Love xx
     
  3. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Hi Daisy,

    Sorry I cannot help with any coping ideas...My husband also went down this route
    he cancelled the daily papers as he said I was stealing his time when I read them.He complained that I was stealing his time by talking on the telephone with my children. eventually I became a prisoner in my own home ..he would not go to day centre and would wake me up at all hours of the night shouting that I was lazy and again stealing his time by sleeping. He is now in emergency respite and will probably be staying in a residential home setting as I can no longer cope with him and my health is not good. Would your husband consider going into respite? I know that mine never would have agreed to it but his agression got worse and there were two incidents where he tried to harm me so there really was no option other than emergency respite.
    Have you any family that could talk to your husband and perhaps persuade him to let you have a break? Please take care of yourself it is not your fault that your husband has dementia and you need a quality of life as well.
    Judith
     
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I was also thinking along those lines , mobile come with radio's in them if you have not got one with a radio , just treat yourself , also MP3 player are really good and holds 100s of music, you could put all you CD's collection on them , then put the head phones on listening to music while you walk around the house
     
  5. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Thank you..

    Thanks so far,

    Jude1950. Sorry to hear that you've 'faced this' too.
    Yes, he's had respite before. Only 2 x 1 week breaks in the last 4 years though.
    SW and SS say I SHOULD be having respiite every 6-8 weeks (rolling respite) BUT he won't go, and there is nothing they can do to force the issue.
    (I already know about sectioning, and don't want this, NOT that it's been offered) .... But I'm left exhausted.
    My family IN -LAWs are usless (SORRY, they've been this way for years now)
    Completely refuse to have my husband for even a few hours.. so NO respite from them !!

    Husband NOT happy with me wearing headphones (even mini ones).
    Tried all avenues to get round this, but end up back at square one.

    If I use the phone I have to put the fan on above the cooker, then go into another room to make a call... THAT way husband is not aware I'm using it. He 'thinks' I'm cooking as the fan is on...
    Hard for people to call me, have to be very careful.

    Husband is VERY suspicious of me and phone calls. Not nice.

    He does not follow ANYTHING longer than half an hour on TV now, hard to any watch programmes at all.
    He'll say he is watching something, but if you were to question him what it was he would bluff his way out of it.. and ALMOST ALWAYS blame me for him not remembering what it was.

    HUSBAND is VERY GOOD at 'looking like' he is watching TV, reading the paper..
    But really he is not. He no longer reads (though he willl say he does).

    BLAMES me for him being in pain, BLAMES me for him stumbling and falling over....
    My day goes on like this ...

    Thanks for the replies
    Take care
    DaisyG
     
  6. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Dear daisyG.My word what a situation you are dealing with.My advise (through my job),ius to let him have his way for a couple of days,then go back to your normal routine.Radio ,TV.You may find that "noise" is the problem.Noise can and has been proved to agitate dementia sufferers.They apparentley feel out of control with noise and that is why they react to it.I may be wrong,its reasearch through my job that has prompted me to post.good luck elainex
     
  7. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    Dear daisyG, I am so sorry and your situation mirrors what mum went through with dad. I feel now, looking back that noise is a big issue but the control is too. He obviously feels this is a situation he can stiill control and like my mum, it's just easier to give in, the same as him not going to respite care.
    I can only speak from my painful experience of looking in on a situation where mum always tried to keep the peace and much of the time to her cost. Before we had to make heartbreaking decisions they were taken off us. Mum got sick, dad had to go into respite, we had no choice and for once mum had to come first. As much as you can't argue with AZ, you can't argue with cancer either. Mum lost her fight in August. I suppose i'm trying to say please, whilst you may think you have no choices, you do. You have to have a life too and you have to have breaks and do things that you enjoy too. The very best of luck
    Jane x
     
  8. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi DaisyGee

    Has your husband been prescibed any anti-psychotic medication for his aggression and suspicion, or anti depressants , or even seditives to calm him?

    If not maybe medication, would be worth a try. I would make it clear to CPN and Psychatrist that without help you will be unable to cope with him for very much longer.

    Sorry no suggestions about listening to your CD player

    Take care, you deserve a medal for what you have coped with so far.

    Alfjess
     
  9. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Daisy

    So good to hear from you again, I have been wondering how you are.

    Spoken to CPN and Psychologist and all they say is for me to stay safe FIRST, and if that means ‘giving up’ certain things then I’ll HAVE to do it.

    Flipping hec Daisy, is this the best they can come up with, I personally think you are giving up on anything that resembles a normal life, your world is getting smaller by the day, and I dont know how you cope with all this aggression on a daily basis. You are one very gutsy lady.

    Honey only you can know how much longer you can go on like this, and I would not presume to comment on that, but jeepers you must ask them for more help.

    Managed to get a couple of extra hours from SS, to give me a break in the week, but feel like I need more on some days.

    Because hubby wont go for respite, I would suggest that you ask the Social Worker for more than a few hours a week, tell them you need more, or you will not be able to carry on.

    Keep in touch when you are able.

    Love
    Cate xx
     
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Daisy, you bring it all back to me now. Jan has been in her care home for 6 years now, and some of the anguish of living with her in the final days at home has faded a bit. Your description reminds me of how unfair and horrible it all was, and the subterfuges I had to create - including giving Jan medication when she didn't know I was doing it - sundowning etc.

    It is a horror these days, but it was a different horror back then.:(

    Take care.
     
  11. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Thank you ALL

    alfjess. Yes we (my husband) is already on Anti-psychotics, Anti depressants, numerous other drugs. Have to be careful as he is epileptic and some drugs conflict . He's on his MAX limits now. Does not take Alz drugs as it Vascular Dementia.

    CPN has more or less said, that it's up to me now to decide WHEN I make the next decision. It's hard though. Don't feel ready, but at the same time life as I know it is slipping away... (Has been this way for years now though).

    Asked SS for months for a couple of extra hours a week. In the end it took a GREAT ADVOCACY worker to help me. Believe me, I was pushy with SS (in a good way), to get these hours. Askd for more now, and SW is going to another manager to see if this is possible. They know I struggle some days, but don't seem to care.
    CPN is good, as is husbands Psychologist and Psychiatrist. They are supporting me in getting MORE help.

    ALMOST at a stage of complaining officially about SW (something happend and can't say). Not sure if this willl go against ME / US getting more help though.

    CPN has said that he can help take husband to respite. They think we are going to have to be really 'sneaky' in getting him to go.

    The last lot of respite he THINKS he was there 3 weeks not one, and in that time he did not get washed, bathed, once. (ALL NOT TRUE).

    Thanks for your advice
    Take Care

    DaisyG
     
  12. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi DaisyG

    I had to be sneaky the first time my parents went to respite.

    I told them that they were going to an hotel for a holiday and the family had paid for it.

    I chickened out taking them, so the CPN and a colleague took them.

    As usual Mum was very agitated, so because the CPN was there she could give mum her sedative early to calm her.

    They eventually settled down, but are now in the same care home permanently.

    You have to think of yourself, you need a break. Your husband will survive respite

    Love
    Alfjess
     

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