So unhappy, and don't know what to do next....

Discussion in 'ARCHIVE FORUM: Support discussions' started by DaisyG, May 19, 2006.

  1. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Dear All,

    I've not been on TP for some weeks now, as I've been trying to cope with my own sickness. (I've been neglecting my health for far too long now).

    We have just had my husband's first 'official' MID birthday. Still only a young 46.

    I could not be more sad right now.

    These past few weeks have seen a lot of downhills, and so little of the uphill moments that we used to get.

    Memory is now deteriorating fast.... with very little 'recovery'. Anger and accusations escalating... Violent outbursts more frequent.... etc etc.
    Recovery (if at all) a lot longer...


    Have had more cognitive tests for husband at psychologists..... He remembers nothing of them at all. Can no longer say what the day...date...time...how old he is...... NOT A CLUE. Nor, is he in the slightest bit bothered about not knowing.
    His planning / mapping skills are non-existent.


    Now needs to be TAKEN to the toilet when out, rather than point him in the right direction.
    Before if the distance was very close, he could walk-ish ( STROKE style) over to the the loo's...
    Now, even if you can see the toilet door ... it just is not registering....


    He's started not recognising neighbours who stop to say hello, when we are out on a little walk....

    Also been in for the day with Neuro docs... didn't really do much...and could really have been done in Out Patients.


    Not really aware that it was his birthday...despite cards up. Food / cake gifts etc...
    His family unusually sent small gifts. Not much... T-shirt etc... They didn't really mean much to him at all. 'Made him' write thank you cards... he didn't know what for....

    Frequency of me being accused of neglect is increasing.
    More regularly get accused of the not giving medication...food...washing etc...

    I'm shattered....to the extreme... AND FEEL SO SAD AND SORRY FOR MYSELF....

    Trying my best to get SW to agree respite..... ASAP. She's looking at the BUDGET...!!
    Got a letter on the go for me to give them in respite... just so they know
    'what he's like on a normal day'.... It's quite detailed.

    What concerns me is that he will seem OK/ better in respite, and not as 'picky'
    or repetative... etc...
    He won't be able to wander and search through cupboards etc....
    He won't have his 'home' around him to 'worry' about. Nor will he be able to
    'get himself' agitated by his familiar surroundings of the home.

    I do know that he will be VERY ANGRY with me for putting him in respite, and I don't know how to cope with the back-lash of that...

    Any thoughts on coping with that would be appreciated....


    Thanks for letting me let off steam..

    Take care

    DaisyG
     
  2. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi Daisy,
    Since I have my Mom with AD and not a spouse my perspective is different so I can only imagine what you are going through. If my husband, who is my other half, had AD, I would be so devastated. If he became violent or mean to me in the process I would be crushed as that is just different from a parent actting up. I did however, just emerge from a very dark couple of weeks as I had alot of illnesses in the family and it was just too stressful and I crashed. I got wonderful advice and support from TP and know you will too.
    You know when you bottom out, the only place to go is back up. For whatever reason we are being tested by having a loved one with AD. We have choices how to handle it , turn away, face it head on, go on pills ( not a bad option:D ) or just crumble. I chose to not let it get me and it is a daily struggle to maintain that resolve. But I will win, I am not going to fail this test and I am not going to go down with AD. That also means that I am going to put myself at the top of the list of my concerns and be good to myself. Then I can be a better care taker for my Mom.
    If others criticize, let them come deal with it. If they won't, tell them to butt out. If your husband gets mad at you for putting him in respite, lie. Tell him your going into the hospital or something. Say and do whatever you need to make this easier for you and for him to understand and tolerate.
    I said once before that the things that make me a good caretaker are also the things that make me vulnerable. I think that goes for all of us.
    Hang it there and please keep posting and let us know how your doing.
    Hugs, Debbie
     
  3. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi daisy

    i think you might need to put yourself first for once, if you get so ill you end up going into hospital, your husband will have to go into respite then.
    nobody likes putting their loved ones into respite, but i think they do adapt once their there.
    and by the sound of things i think your well due some time for yourself.
    think about how angry he'll be, when he comes home, at least then you will have had a break and be able to deal with it a bit better.

    perhaps you could tell your sw that if your too ill to look after your husband budget or no budget she's gonna have to deal with him, they should be bending over backwards trying to help you not talking about how much it costs it makes me so angry:mad:

    sorry not much help,you sound as if you could do with a big shoulder at the moment:(
    is a virtual hug any good to you {{{{{hug}}}}} :)

    hope you get your respite, please keep us posted
    take care xxx
     
  4. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Daisy,
    I was only thinking about you yesterday, and wondering how you were doing. So pleased that you felt able to post again.
    That's good really, because if he was even more anxious, it might only be worse for you. Though I wonder if his increasing anger is a sign of his frustration at 'not knowing'.
    You have every right to feel sad and sorry for yourself; you are in an horrendous position. A husband who is very ill at a relatively young age, your own family not nearby, and at the best 'unsupportive' in-laws. We can be of no practical use on here, but you do have a group of friends who will listen to you, laugh and cry with you, so keep talking.
    Keep pushing for respite, let them know how desperate you are; let your doctor know; let them know that if respite isn't forthcoming then you may have to look at permanent care because you cannot go on. Does your husband go to any day care, or do you have any sitters?
    No but being in strange surroundings may make his symptoms more pronounced; it sounds as though you are worried that people are going to say "he's not that bad" - you know how difficult it is, you have to live with it.
    Does the backlash involve physical aggression. If it is all verbal, then maybe you are going to have to dvelop an even thicker skin. If it is physical, then you need to get help.
    Let off steam anytime Daisy. As I said, it was good to hear from you again.
    Love, Amy
     
  5. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Daisy, in different situations, but how I know that feeling! I was there yesterday, today I'm upbeat, tomorrow - who knows????? I think I'm starting to recognise, 'it comes with the territory'.... and somedays trying to fight it is just another useless waste of whatever physical or emotional energy I've got left.....

    Great advice already here (which I will take on board for myself too!!!!). We are in 'great company'..... and I for one am really starting to get hooked on those 'virtual' hugs'!!!!

    Take care of yourself - for yourself!

    Love, Karen, x
     
  6. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Isn't i tstrange how much better a 'virtual hug' can make you feel!
    Amy
     
  7. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    oh ok then here's one for you as well {{{{hug}}}}
    and while im at it one for TF too {{{{hug}}}}:D
     
  8. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Thank you

    Thank you all so far for your messages.

    Amy,
    Yes, sometimes the aggression is 'hands on' ... tends to be a hard grasp usually.... Followed by "Don't MAKE me hurt you....." "Don't make me MAKE you do...."
    This is usually when I have asked him to wait a while for something.
    (Please note, I would not let him wait for something 'important'.
    It's usually something like look for a magazine or something).
    Yes, I am 'aware' that at the time it IS IMPORTANT TO HIM....

    But if anyone knows anything about 'strokes' the non-affected stroke side becomes much stronger, and he has hurt me.


    Told the docs about this, both in person and letters/e-mail
    (stroke and neuro docs), and I know the secretaries have read and passed on the e-mail/letters.
    I've 'seen' my letters in his case note too....

    The docs haven't really commented much.
    I've also asked for their support if he 'rang the police on me'...claiming abuse.


    I've a HUGE THICK skin to cope with the name calling... I have to.
    It's a daily thing now. I think we all have to develop a bit of a thick skin.
    The names still hurt sometimes though....

    Is it REALLY common for a AD sufferer to name call when they don't get their way immediately?
    In many ways now, he is like a spolit child...


    We do have a sitter service (Crossroads). Need to use them more often though, and for longer hours too.

    Thank you all... again.

    DaisyG
     
  9. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Daisy,
    I have said it before. Abuse in any form should not be tolerated. It is where I draw the line. Treat him like a child if he is actting like one and tell him that isn't acceptable ( to quote "The Super Nanny") . It is easy for me to say since I'm not going through what you are but find a way to remove yourself when that happens. He really is actting like a two year old and you will have to treat him on that level.
    Good luck with him, your situation really is horrid.
    Debbie
     
  10. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Daisy,
    Something you need to get straight in your head. On TP we assume the best of everyone, we assume that you would not make him wait if it was something really important; we know how difficult caring is; we know the pains and frustrations you might feel, we know how hurtful our loved ones can be. On here you are talking to people who are ON YOUR SIDE.
    (Sorry, I may have gone off on a tangent here, but I don't want you to feel that you have to justify anything you say to us.)
    I think you have to look after yourself, get more help from Crossroads if you can.
    Take care, and I hope this weekend brings you some good bits. Do you have some good bits, or does it feel negative all the time?
    Love Amy
     
  11. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    Daisy G Neglecting Your Own Health

    I am knew to tp but i feel for you big time my hubby has been ill for a long tme he is 59 now he had to stop working 2 years ago
    I like you am neglecting my own health
    I have a lot of health problems i know made worse by the worry of hubby not being himself etc

    THANK GOD FOR TP
    IT FEELS LIKE YOU DESPERATLY NEED TIME OUT FOR A WEE WHILE
    I KNOW THESE WONDERFULL PEOPLE ON TP WILL GIVE MORE ADVICE AND SUPPORT THAN I CAN

    I wish we could reach out and give each other a hug
    we cant so i am sendig one
    love Bel x
     
  12. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Daisy, feel for you. I have experienced most of this behaviour with Lionel, and I thought he was young at 64.

    The awful name calling. On the odd occasion when he has reduced me to tears, he will accuse me of "putting on the crocodile tears". Silly I know, but that really wounds me.

    Sending you all a very special hug, love
     

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  13. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    A New Day....

    Dear All,

    So, a new day for me.

    I'm feeling a little better 'health wise'.

    This past week has been THE WORST EVER !!

    I've been locked in the bathroom, and had my head in the sink for most of the time, ..... or tried my best to catch up on sleep.
    The biggest problem I found was my husband not 'remembering' that I have been 'sick'.
    He thinks I'm just 'pottering' in the bedroom... comes in and says
    "What's up with you ?" ..... "Are you going to get me some lunch?"

    (Is the 'NOT REALLY CARING' a normal phase ?).


    So... 'muggins' has had to get up from her sick bed... and go and get him lunch/food etc...
    ME being ill is just not 'registering'.

    I've said to him... "Look at me...do I look OK ?".... he repiles .... "You look fine to me"...


    Moving on...
    I do find myself speaking to him like a child every now and again.
    I am on the whole a seriously patient person....and put up with so much ...... I think we all do.... It kind of goes with the job!!


    Like others on TP, I have found myself in tears on occasions...
    It ALWAYS met with cross words... and so little 'care'....

    And like others, yes I do walk away into another room... I have to.


    Thanks for your care everyone.

    DaisyG
     
  14. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Daisy
    yes it is.
    It seems that AD sufferers are unable to comprehend what is going on around them.
    They are not unthinking,they just cannot think.
    My wife has asked me so many times what I take tablets for!!It does not regiister,a kind of a denial.
    You are not alone in this one.
    Norman
     
  15. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Oh the frustration of it Daisy, but you are not alone.

    Thinking of you, and knowing exactly what you are going through.
     
  16. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Daisy,
    I don't know what I can say to you that might be in any way helpful, but just felt I had to post with a <<<Hug>>> rather than just move on to the next thread. Somehow, sometime, you are going to get out of this situation, and leave your horrid in-laws behind. Only you can decide to do it, but I think you will have to soon, before your health breaks down completely.

    Regards
     
  17. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Daisy hi,

    My wife Monique was at a very similar stage a little while ago and I really found the aggression and anger she presented to me despite my best efforts really too much. I actually 'lost it' with her. I shouted at her and gave her some bleak alternatives. Now I am not very proud of this but it did have an effect...

    Just because people have AD does not mean they are angels or suddenly really nice sensitive people. They are the people they always were with memory loss! I am of the opinion that people with AD should be treated as normally as possible. There are some things they absolutely cannot help - incontinence, fear, nightmares, visitors and not knowing who you are... No problem but there is an area of mutual respect, of behaving reasonably to another human being and if they overstep that line, like children, they need to be warned that there may be repercussions.

    I think what I am saying is you must stand up for yourself - you have as many rights as your husband.

    Let me hasten to say that I have only 'lost it' again once in the ensuing months and normally I can cope and I really hope I am not a bully. I actually find it funny now that in spite of her loving me dearly she thinks I am a penniless pauper who came into her house two years ago and is trying to steal the house, money, property, boat which belong to her father who was French, did not speak English and died 30 years ago... She also frequently think I am her mother.... Got to stop cross dressing!! New it would get me into trouble...

    Hang in there

    love

    Michael
     
  18. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Michael,
    My Mom is doing those exact things to my Dad. Instead of him sticking up for himself, he waits until he is totally frustrated and then just gets snippy with her, not really saying what he should which makes her really dislike him. Then she will come to me complaining about the man that just walked in one day and won't leave. I lie, tell her that her husband will be home tomorrow and that seems to help......for now. I think if he would just stand up for himself she would back off. Then again, he might find a fying pan across the back side of his head too !:eek:
    Your right, the basic personality doesn't change, infact I have read that whatever or however they were when they were healthy is just enhanced when they get AD.
    Debbie
     
  19. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Debbie hi,

    Had a difficult morning trying to sort out some social security issues and some basic business problems and was actually out of the house when Monique woke early this morning - She could not find me and when I got back 15 minutes later gave me a hard time!

    This continued to a crescendo of abuse and I simply snapped back instead of being conciliatory - Just one sentence - not rude - not cruel but really firm.. Voila! sweetness and light now!! Mind you its never over till that physically challenged lady sings and all that could become ineffective!

    Like kids that are totally spoiled it seems to me Monique has to be aware of the behavioral limits that are socially acceptable.. Very slippery path of course but tell your dad that it works for me.

    love

    Michael
     
  20. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hey Michael,
    I keep telling my Dad to be firm and not let my Mom run over him. You can't reason with a two year old or an AD person! You can't let them have tantrums (it is just for attention) or have their way all the time. Have to ask yourself, if this was a child what would you do. You would say NO, not give in, be consistent, and give positive reinforcement.
    Sounds like you are doing all of this and its working for you ! I'll pass it onto my Dad and hope he will do it. He is set in his ways and will not change because he likes his routine and the world just has to adapt ! Taking care of them is like trying to herd cats!
    Take care,
    Debbie
     

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