Respite Problem ...... again

Discussion in 'ARCHIVE FORUM: Support discussions' started by DaisyG, Oct 6, 2006.

  1. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Dear TP Family,


    I'm in a bit of a fix with my IN LAWS again regarding respite.


    I've been having a VERY VERY difficult time with my husband, and it looks like that in the next year or so ........
    'I may have to decide on something' more permanent.


    I remember reading on here ages ago (may have been Bruce).... who said that ......
    "You are not saying I'm NOT going to do this anymore .... but .... CAN'T do this any more" .


    Anyway, a week of respite is what I need to arrange.
    it will only be my second week in as many years.


    Things have progressed downhill.



    IN LAWS (USLESS BUNCH..... SORRY !!).... NOT HAPPY ABOUT
    THE ARRANGEMENT/S.


    "Why do I need to have time off to myself?"

    "You are soooooo lucky at not having to work"
    That's a joke... I work harder now than I ever did when I WAS working.


    They ALL think that I'm selfish.



    NONE of them EVER visit for longer than a couple of hours MAX....
    They don't understand (typicall I know...)

    (We can count on one hand the number of visits that we receive...)


    How is it that those who NEVER ring / visit ... all KNOW better than ME?


    I've now 'been accused' of not coping .... (said in a really patronising way).
    If i was coping then i would not need a week to myself....


    Gggrrrrr......


    MIL does not want me to mention AD ever again....
    SHE ALONG WITH THE REST OF THE IN LAW FAMILY ARE IN DENIAL.



    HOW IS THIS SO?

    HOW CAN SO MANY PEOPLE IN THE SAME FAMILY ... ALL BE THINKING THE WRONG WAY?


    She recently asked me YET AGAIN to think about arrangiing a motability scooter for her son / my husband.....

    THE MAN GETS LOST GOING TO THE LOO !!
    HE HAS EPILEPSY....
    MULTIPLE STROKES / MOBILITY PROBLEMS.... AND

    MOST IMPORTANTLY....

    HE CAN'T SEE !!! (well... he can see a little bit).....

    She is NOT going to take NO for an answer.


    Sorry, but she's crazy......
    You would have thought that the VERY fact that you can't see a great deal... would mean that a scoooter IS OUT OF THE QUESTION?????


    Anyway,
    What to do about their comments about me NOT coping?

    I'm thinking that in some way they may use this against me in the future....



    What I am meant to do?
    How do I EVER get a break? without being accused of not coping........????


    I still have not slept in months.... due to the continued questions and wanderings of the night....



    Sorry for rambling on....

    Feeling a bit low today.....


    Take care

    DaisyG
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Lets face it Daisy, with this bunch of people, you're ALWAYS going to get the blame. You will not be able to persuade them otherwise, and you need to some to terms with this. You need to do what you need to do and ignore them. Easier said than done, I know. This is a radical idea, but have you ever thought of packing a bag for him and taking him to their house for a couple of days? Let them really see how it is, and give you a break. Exactly HOW do you think they could use your "not coping" against you in the future? What do you think they could do? Take him in and care for him 24/7? Do you think that's at all likely? I remember that you were concerned about them accessing your accounts - have you got that EPA set up yet?

    Jennifer
     
  3. JT13

    JT13 Registered User

    Aug 9, 2006
    41
    Dear Daisy,

    I understand how you feel. Also, I do agree with Jennifer. They already know the gist of it but are in denial or refuse to accept the details. Best way is to take "trips" over to the in-law's house and make them see what happens in your daily life. One night is not enough. Make it one week or two. Understandably, you'll be wrenching your teeth wanting to avoid their sarcasm but the time there is necessary to make them open their eyes.

    Talk is cheap to them. Actions speaks louder. When you're there, get them to pitch in. Of course, they'll help willingly in the beginning and claim it's "easy". Keep going and soon, they'll realise you have to COPE every day for years.

    If they fail to do it even one week, they'll realise their comments were selfish to begin with.

    I wish you the very best.

    Regards
    J
     
  4. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Hi

    Hello Jennifer,


    THERE WILL BE NO CHANCE OF ANY OF THE IN LAWS EVER LOOKING AFTER MY HUSBAND.
    Not EVEN for a few hours... let alone an OVERNIGHTER....!!


    THEY REFUSE TO DO IT. POINT BLANK. TOO BUSY + + + (yeah right).....


    I have 'comes to terms' with them ... but I can but hope???:(




    Still in the process of sorting out EPA ... seeking legal advice etc...


    Have been getting a lot in writing to various people ... to cover me / ourselves ....


    I'm thinking that they may use the 'she's not coping' 'against me' regarding the EPA... you know.... she's not mentally capable of looking after her husband ..... poor thing thinks she needs respite .... for what ???? ....
    Nothing wrong with her husband......


    there fore .... not able to handle EPA .... so we'll do it for her ...
    etc.. etc....

    Hope this makes sense ... without me having to work out how to write things on here.


    I KNOW ME NEEDING RESPITE DOES IN NO WAY MAKE ME A FAILURE.


    Psychologist says I must try and arrange it far more often if I am to go on the way I am.


    SHE KNOWS what I have to deal with ..... and it's not that nice on some days....


    Husband getting more violent .... most days....
    IN LAWS KNOW this .... BUT are NOT HAPPY with me for telling anyone about it!!!


    I'm living in this crazy world ... where I 'm asked to keep everything a SECRET.....

    AS if I didn't have enough problems .....


    Thanks all,


    DaisyG
     
  5. JT13

    JT13 Registered User

    Aug 9, 2006
    41
    Dear Daisy,

    Take 2 seconds to breathe... it's ok to stop for a moment and take care of yourself.

    Firstly, you had stated the In-Laws do not give two hoots.

    Secondly, they want to keep your husband's condition a secret.

    Thirdly, they don't care what you're going through.

    What you're merely painting is a picture that they care too much about their own lives and the IMAGE of the family. With that, they have chosen to forego the needs of your husband and you.

    Well, you married him, he married you. You DO have a choice. Your husband's wellbeing is NOT in the In-Law's hands. You decide what is good for him, not them. To do that, you too will have to be able to take care of yourself first before having the mental, emotional and physical strength to take care of him. Do not feel guilty that sometimes you can't because it's okay.

    When you start making decisions, make it as you and him are one unit. Do not be afraid of what the In-Laws would say or do because they surely only care to insult and have a "greater than thou" attitude. Why do they not pitch in to care for your husband? It's because they DO know it's not easy. By pushing you, they are merely doing so to ensure they don't ever take on any part of that responsibility and also justify to themselves that they somehow "care" for him.

    Please don't drive yourself to the brink of breaking because that won't help you nor your husband.

    Don't allow others to sweep you under the carpet as they had with your husband. Neither of you deserve that.

    Many hugs...
    J
     
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Use that right back at them ……… if you let it happen they are going to make you feel that your in the wrong and you know that your not , that is easterly done when your feeling so venerable ,low.

    They sound like they are playing mental games on you, get that respite. Before the mental pursuer gets to you
     
  7. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Daisy G

    JT is absolutely right, he is your husband and you know exactly what you need to do to cope, if you need respite, go for it as often as you can.

    Would your husband want you to be exhausted looking after him 24/7 with or without support from his family? I sincerely hope not.

    You will have to be strong enough to do what you know is right for the both of you and if his family don't like it, tough!

    I admire you for doing what you do with little or no help, if telling the relatives everything that happens brings scorn on your head, don't tell them anything.

    Keep strong,

    Kathleen
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,583
    Kent
    Dear Daisy............If all your in laws can do is criticise, give them their marching orders. You have enough on your plate without having to accept verbal abuse from them. If the are not prepared to, either help or accept your decisions, I wouldn`t allow them access, nor would I speak to them on the phone.

    How dare they add to yopur troubles.

    We on TP know what you`re going through.

    Take care. Grannie G
     
  9. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Thank you


    DaisyG
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Daisy
    You say
    "I have 'comes to terms' with them ... but I can but hope??? "

    Actually, I think you need get past this. What they SHOULD do and what they WILL do are two entirely different things. While you continue to hope that they'll improve, you're wasting what little energy you have to spare. You can't change someone elses behaviour, you can only change your own responses.

    Having you considered moving? I know that sounds like a monumental task, but if you're not getting help from them, just grief, maybe it would be a good idea if you were physically distant. Of course, if you have good support where you are apart from them, forget I said that.

    Jennifer
     
  11. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Hi Jennifer,


    Yes I have (we have) considered moving... and I still hope this will happen next year.
    Hopefully Spring-early Summer.
    Just need to spruce our home up... You know, do all the tidying and paint touch ups etc...

    They (in laws) would be HORRIFED if we move futher away ... can you imagine ?.


    What I find hard to 'understand' is how they ALL can be thinking 'wrong'?
    Why should I keep things a SECRET ?
    I'm in thiis for the long term, and have no plans to go anywhere.


    I've even been asked NOT say anything to ANYONE about the violence.
    How bad is that?
    Husband's psychologist is worried for me.... as it has been so bad .... BUT still
    I've BEEN WARNED not say anything ....

    "What exactly are you hoping to gain from telling the doctor that?" ... has been the comment/s...
    ...."MY SAFETY"....




    I don't understand that they 'see a respite break' (for us both) as a failure / not coping.




    It's true that they don't realise what I have to do on a daily basis... BUT
    when they ask my husband
    "But you can do .... x ....... can't you? .... he replies
    "Yes, of course I can..."
    In fact, he hasn't been able to wash and dress himself in over two years now.
    THE FAMILY STILL CAN'T SEE THIS !!

    He's even told them that he helps me do the housework ... cooking... ironing !!


    When I've tried to talk to them about the MMSE etc etc....
    They see nothing wrong !! It's truely BIZARRE.
    They know that he can't find his way to the bathroom ....
    BUT still see this as not really being a problem.



    MIL was mad at ME when husband went 'walk about' months ago.....
    (HE WENT MISSING).....
    If he wants to go for a walk then he can !!
    I'm NOT to control when and where he choses to go for a walk.

    BUT... he cant' find his way home... if he leaves the front gate ... Has no idea of his address etc....



    DOES ANYONE ON TP KNOW OF ANYONE ELSE (FAMILY OR OTHER) THAT HAS BEEN OR IS IN A SIMILAR SITUATION...
    FAMILY IN SUCH A GREAT DEGREE OF DENAIL?

    HOW HAS THIS BEEN OVERCOME?

    HAS ANYONE ELSE BEEN ASKED TO KEEP 'THIER MOUTH SHUT' .. AND KEEP THINGS A SECRET?



    Thanks for listening.

    Take Care

    DaisyG
     
  12. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    155
    stretford
    Dear Daisy

    Iam so sorry to here the problems you are having, all i can say is do is what you think you should do. Do not listen to your inlaws no one can understand what it is like to look after someone with this illness. Iam sure you know from the replies on here we do understand. There is nothing wrong in putting him in respite for a week believe me the time will come when you can no longer physicaly cope. My dad looked after my mum and we could see as a family the effect it was having on him. So much so he had a heartattak. As much as he did not like putting her in respite the brake did him good.

    You do whats in your heart its you looking after him no one else.

    take care kathyx
     
  13. JT13

    JT13 Registered User

    Aug 9, 2006
    41
    Let them go

    Dear Daisy,

    Is it so important that you figure out WHY your In-Laws are this way? Even if you remotely get an answer, it's not going to change a thing or to help you or your husband in any way.

    Like others have said, it's past the "hoping" that they'd see what you see, or even feel any empathy. Some will deny it for the rest of their lives. So save your energy for your husband and yourself instead of caring so much what the In-Laws think.

    Regards,
    J
     
  14. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Morning JT13,


    What is hard to 'understand' is that family (in laws) have PLENTY of empathy for others etc ... people in their community BUT not close family.
    It strange. VERY ODD.


    One of my biggest 'MIFFS'.... is that when someone in ...... 'their community' village/town' asks how WE are doing .... they lie .... and say ..
    We're getting on fine .... lots of improvements etc etc....


    They make out that they are always visiting us... helping us... etc
    When in reality they do nothing !! Hardly EVER see us. It's sad. VERY.


    I hardly EVER get the chance of going out now.....
    Husband is needing A LOT MORE care and supervision (day and night)
    ... and a few weeks ago I bumped into someone that 'knows the family' through a Church /School related Group.

    The comment was.....
    "You are SO lucky to have a family like you do.... I bet you are really greatful for ALL that they do !!"...



    Grrrrr


    Take Care.

    DaisyG
     
  15. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Oh Daisy G, I have been in a very similar situation with my brother, it drove me crazy until I decided not to let it get to me any more.

    It was hard, but I had to do it, he is living in a fantasy world where Mum is concerned and it is his own choice to do so.......nothing anyone says or does alters that.

    If he wants to behave as he does, fine. I refuse to waste my energy on someone who only hears what he wants to hear.

    Does it really matter what other people are being told? You alone know your husbands needs and you alone are looking after him.

    Believe in yourself, you are doing a fantastic job, don't let these unpleasant people undermine you, they are simply not worth your anger.

    Keep strong

    Kathleen
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #16 Margarita, Oct 8, 2006
    Last edited: Oct 8, 2006
    Yes, because I have been in your situation about covering in up and not just about AZ. As you must know that in this society mental illness is seen as a weakness a shame something to hide and not admit to

    Your in-law may not even be in denial at all, they may just be ashamed about it, because they no how the public in general out side the home stereotype any kind of mental disorder so they want you to cover up for your husband

    I am not saying what they are doing is right. I have been up against that attitude of covering up since I was a teenager and the attitude of the public about my brother mental disorders. I could see the pain in my mother, father. Face when they son who they had so much hope, dream for his future just disappear. So all they new what to do is cover it all up to every one , because in a way I understood I could see how people stereotype , label, discriminated my brother, but still I did not agree with my parents in covering up.
    I just new that they could of got so much more help for my brother if only they was not so ashamed had more understanding educated then self about his mental disorder . No, I could not change my parents view. I was lucky that I could get out, get on with my life, and let my parents, family get on with it.

    Therefore, when my mother got ill with AZ and she gave me that attitude to cover up for her. I just simple was not putting up with it. Someone above already said this. You cannot change your in-laws you can only change yourself .so that what I did.

    You are up against a brick wall with your in-law. if 28 years on the medical profession is slowly changeling its view on how AZ is not a mental illness and still some doctor, consultants disagree on that. How our we going to change public attitude towards any mental disorder lets a lone your in-law.


    this sums it up for me .......Jenniferpa You can't change someone elses behaviour, you can only change your own responses.
     
  17. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Daisy, something I wanted to add:
    You are concerned that your inlaws might be able to use this whole thing against you sometime, but if that situation arose, the people you would be dealing with (social services, court of protection, doctors, whatever) would NOT be buying into their whole "there's nothing wrong" mindset. Those people would be only too aware that this is a real disease, with real consequences. It might not be pleasant, but you WOULD prevail.

    I would practice statements in front of a mirror, said in a matter of fact tone of voice
    e.g.

    The stroke damage is permanent and not going to improve

    and to people you say you must be so lucky to have family to support you say

    My husbands family don't help us.

    No emotion, just matter of fact, don't even elaborate, becaue it's not really anybody's business but your own. You can even say "I'd rather not talk about it".

    Practice these or other suitable statements so they come out automatically. I'm not saying they'll improve the situation but they'll make YOU feel better.

    Love
    Jennifer
     
  18. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Daisy hi,

    I get the feeling that if they are not doing what we are doing then they do not have any concept of what it is like.. The only close family 'we' have around is Monique's brother-in-law and his wife........ What a joke! he is was in total denial and made my life so hard - his wife - suggest that as Monique was 'child like' I should train her to use lavatory paper and flush the loo... as you would a child. I could not make either of them understand that short term memory loss means you cannot learn anything..

    I really feel for you.. It is not fair but then what is? What has improved the situation somewhat for me is that I had to go into hospital for a minor operation and dear old Jacques had to come over with another distant female relative and 'hold the fort' for 3 days................ What a change since then!!! just got a glimpse of how it is .... Actually now is nicer and better.

    If there is any way you can get them to 'take over' for even a few days and nights then perhaps things will improve... Like you I have had only one respite in around 3 years (whilst I was in hospital for the minor op) but in a couple of weeks Jacques and the distant relative return for 7 days whilst I go sailing... funny thing is I almost don't want it but that may change.

    Dear Daisy - I really feel for you... Those who have not been there seem incapable of understanding... Is there no way you can not get a 'note' from your medical advisor that you too need a week? Then your in-laws can decide if they want to 'help' or not...

    Take care

    Love

    Michael
     
  19. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Thanks ....

    Hi Michael and others,

    I'm afraid to say that in laws

    WILL NEVER TAKE CARE OF MY HUSBAND


    They don't really like us visiting any more, as it makes them 'uncomfortable' (the children don't like it too ) .... and in some ways they are ashamed.

    He gets shouted at for dribbling ... repeating himself etc etc.....
    Taking to long to walk from A - B ....
    I could go on ......


    When I really think about it.....
    I don't know why I want family involved in his care... they 'do more harm' than good.


    I just want some 'recognition' that what I do is an incredibly hard job.
    S I L still thinks I am 'lucky' .....


    It seems that only us TP people REALLY KNOW WHAT LIFE IS LIKE.
    EVEN THE OTHER 'PRO'S AND DOCTORS' don't really seems to appreciate the hard work that it is.

    Take Care

    DaisyG
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    DaisyG

    Moving forward and away from your in-laws, as like you say It seems that only us TP people REALLY KNOW WHAT LIFE IS LIKE.
    took me a while to Finally except that and move on in to TP:) great advice ,help ,understanding .

    So Was wondering if you have sorted out any respite for yourself or are you still not sure ?
     

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