1. crums

    crums Registered User

    May 22, 2004
    12
    shipley
    hi feeling very guilty this evening as my husband has gone into respite for the week.phil was diognosed with AD 4 years ago at the age of 52 this is only the second time he as had respite does it get any easier?? am i doing the right thing?? did he really have to go ??couldnt i have carried on ??all these thought going round inside me.. wot happens next where do we go from here am i feeling sorry for myself. sorry but i just had to write these thoughts down hope nobody minds as its the first time i have used the forum as a sounding board. clare
     
  2. 1234

    1234 Registered User

    Sep 21, 2005
    43
    bradford
    know what you are feeling

    just felt for you, only discovered Tp a few weeks back but it has helped me alot to cope
    my husband is 55 very fit and to any one there is no problem , but you and i know different, I thought i was a strong person bit this bloody illness will probably finish me off before him , i just cannot believe what a difference a few years can make , from having a pretty wonderfull life, to todays situation, will not pretend he does not frustrate me but love him any way
    it really doe help to talk take care Pam
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    No, it doesn't really seem to get any easier because the situation is just terrible. But what happens is that we seem to build up experience, which helps us, even though it is hell at the time.

    The first time that something happens, it is all new, and full of fears - for us, and by us for them.

    Next time, we have the experience of the first time and we can move on just a little to try and improve on how we did last time. Then something new comes along, and we have to do the same for that. Then the first challenge seems less because we have handled it already and we have to concentrate on the new one.

    Slow and steady is the rule, and take things problem by problem, day by day.

    It helps immensely to be able to plumb the way that other people have handled each obstacle, which is why Talking Point is such a boon.

    Jan was 50 when she started on her journey, so I understand where you are both coming from.
     
  4. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #4 Mjaqmac, Oct 12, 2005
    Last edited: Oct 12, 2005
    Dear Crums

    My mum went into respite a few times and each time I felt everything you did. Did she really have to go? Could I not have coped? Was I a horrible person for doing this? I found those feelings never changed, I always felt dreadful and worried when she was in respite that they wouldn't look after her as well as I would, but the answer is, as Brucie said, you become more used to situations as they occur, more equipt to cope, but in my experience it never actually got easier. So don't think there are super human carers out there coping better than you, there aren't!
    It's tough but we all cope as best we can. You're doing a great job and you really need the respite to recharge your batteries to enable you to carry on caring. (sounds like a movie, sometimes it feels like one!)
     
  5. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    A pinch of hope

    Brucie,

    You stated that
    which I agree with, but can I ask, even though the situation doesn't get easier, haven't you found that your ability to cope with it does get better? I'm guessing that that is what you mean by
    I just wanted to clarify this because I think its important for people to know that there can come a point where although the situation doesn't get easier it gets progressively worse, somehow we begin to cope with it better. There needs to be some hope provided to people if they are going to get through this I think. I don't think it is a false hope, but then I know some who are still suffering through the bad times will think I'm full of it.

    Doesn't mean we still don't have our bad days, but I find I'm not rattled as easily as I was. Am i just lucky?

    Crums, we found that putting Dad into respite felt terrible at first, but try looking for the positives. We began realising that it was good for Dad because it meant that we could go on looking after him from home for longer if we had the breaks. For Dad, we were also lucky because the routine and stress free side of respite (in that he wasn't feeling like his behaviour was out there for loved ones to see) seemed to give him a few weeks of calmer life each time. He loves being home but he is so much more stressed around us. Not saying that all these positives don't stop you feeling like a creep for putting them there, but it can soothe it a little bit.

    Best of luck, my thoughts are with you.
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    but can I ask, even though the situation doesn't get easier, haven't you found that your ability to cope with it does get better?

    Yes. It is a little like when someone is in an accident and has a very nasty injury and the body provides shock as a way of numbing some of the pain, to get the person through.

    With a spouse or close relative with dementia, the successive and repeated jars of the development of the dementia eventually make a sort of shock set in for us, the carers, so that it becomes more possible to cope. I was going to write "gets easier" but that doesn't happen; we just cope better.

    I still think that, out of everything that has happened to Jan, my biggest shock was the realisation that she couldn't write her own name, when that stage came. That was when I knew we were in this thing for real, and I was scared witless, unable to discuss it with the one person I could always talk with about anything - Jan.

    The other thing that helps us, as carers, is our acceptance that what we are doing is in some way helping, that we are not just going through the motions.

    just wanted to clarify this because I think its important for people to know that there can come a point where although the situation doesn't get easier it gets progressively worse, somehow we begin to cope with it better.

    It is important to differentiate between the situation itself, and our ability to cope. The situation will always be a horror. Our ability to cope seems to grow as each new challenge appears. Some challenges we can't cope with, or can't cope alone with. Which is which depends on the person, their age, physical and mental wellbeing, their situation etc.

    I've come to terms with Jan's destiny now though it still hurts to see her so. But I do get immense satisfaction out of her occasional smiles or acknowledgements, such as she can manage.
     
  7. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Respite - seems we can't live with it, or function without it somehow.
    1234 I can echo your post almost to the letter. It does help to read other peoples fears and experiences. Regards, Connie
     
  8. janew

    janew Registered User

    Mar 28, 2005
    51
    Dear Crums

    I know exactly how you feel. I put my mum into respite for the 1st time for a weekend after caring for her for 3 years without being about to get away for a break. I felt so guilty but it was so nice for me to go away for a weekend to visit friends - I don't know how I would have felt if I had stayed at home but when I went to pick mum up on the Monday the 1st thing she said to me was 'Your Early', gosh that statement made me feel so much better and although I don't want to do it often I would for my own sanity do it again when I know I need a break.

    It is nice to hear that other people have the concerns as you - although mine is my mum.

    Jane
     
  9. mcrookes

    mcrookes Registered User

    Jun 4, 2005
    6
    Sheffield
    I am really struggling with the thought of having respite, my husband deffinetly does not want to go, but common sense tells me that it's time. I have cared for my son with Autism for 37years, never having any respite, then my husband was diagnosed with Parkinsons 5 years ago still never having respite, but now my husband has been diagnosed with dementia I feel at breaking point sometimes, so I have started the ball rolling to get some respite, I'll still have my son with me because he won't go anywhere, so I now feel I'm making fish of one and foul of the other. I try to go through the situation where I'm taking him into a beautiful brand new home, but it's the saying goodbye I can't see myself doing, is there an answer to this, notice I didn't say easy, because I'm sure it's not easy for anyone.
     
  10. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    135
    Germany/India
    Dear Mcrookes

    I can imagine how hard it is for you. Having to look after a child with different abilities is much more demanding than anything else and together with another family member's condition just as bad, it's terrible, just to use a mild term. I have a friend whose son suffers from a spastic condition, whose husband turned alcoholic and whose father had dementia. Can't remember if she ever took a holiday in her life. Besides, she had to work to support her family and the carers for her son.

    But in the end, I think one must look at it all with a certain element of detachment. In one of the talks I attended recently, the doctor/speaker said that as family members and carers, we should take 2 hours a day off for ourselves, irrespective of everything else, to avoid the burn out syndrome. He also stated that when the affected die, carers have a hard time feeling 'normal' again and in some cases, it takes years - therefore the emphasis on taking a little time off everyday

    Do take care .

    Sue Stimpfig
     
  11. Loiner

    Loiner Registered User

    Oct 29, 2005
    73
    Leeds, UK
    Dear Crums,
    yeah, u feel a failure, its natural I think, all the feelings of 'you should be able to do it all yourself'.
    I've just arranged to get proper respite for my mum myself, it had to be approved by an SS panel for a month a year of respite, Only used it when I had to go in hospital myself but I realised, if you don't take care of yourself, then you won't be able to do any caring at all.

    As far as I am concerned, its the lesser of two evils, the other being putting them in a home for good, Then I would feel bad, just pamper yourself the time u have as respite, and get some sleep without worrying.

    David
     
  12. Loiner

    Loiner Registered User

    Oct 29, 2005
    73
    Leeds, UK
    Dear Mcrookes,
    Yeah, I feel for u looking after 2, hope things go well for u. As to your hubby not liking it, mum is the same, she cries when its talked about, but u have to be hard and realise, if they were as u remember them before they got ill, they wouldn't want u so tired and worn out.
    We can all do only so much, hugs

    David
     
  13. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
  14. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Respite -from mypoint of view

    Hi, well I have just come back from a weekend in Lille, Lionel being in respite.

    I went away with 10 of Lionel's friends. Some of them realise where I am coming from: "Yes, you do need a rest". The others feel "Well he seemed to be coping last time I saw him", albeit being propped up by me.

    Please don't get me wrong, I really understand where they are all coming from. This is an illness that, unless you are experiencing it from the inside, you cannot really comment on.

    I have put Lionel into respite before, but have ususally gone away with a couple of girlfriends (something I did before he was diagnosed). This is the first time I have been in a situation without him. It was hard enough, missing him as I did, without feeling judged. I do realise if ther were to read this site, they would feel affronted. I know they do not mean to judge.

    I think my point is that once again respite is that two edged sword. Regards Connie
     

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