1. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    hi everyone
    its a bad night tonight ,i decided to use the respite i was offerd,to morrow Jim is to go for a week ,he has only been once before that was3months since ,and i have only been through the door twice since then ,he has been a little bit calmer since he started taking EBIXA but not enough to stay with CROSSROADS or other family members,his last respite did not go down to well ,he shouted and cried for me all week ,he had lots of falls even though i told them he was to unsteady on his feet to be left walking by himself ,however the answer is allways, there is not enoughstaff to give him 1 to 1 ,i am sure they will do the best they can as i have given them enough earache ,this is on an hospital at that ,this is one of the hardest things i have had to do.i did not tell him he is going as i would not get him through the door ,he will not be kidded so it is no use making up stories .Although he does not know he has been unusually upset to night ,has been crying and asking me not to leave him .how guilty i feel ,there will be no sleep for me to night ,i know i have so much to catch up with ,the week will soon pass.i know i sou nd sorry for myself but i do
    ANGELA
     
  2. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Dear Angela

    You have every right to feel sorry for yourself. There is a limit to how much a carer can do and you must be well past that limit.
    If you break down Jim will have to be away from you much longer than one week.

    You will no doubt feel guilty all the time he is away, but unless you recharge your battery you will be of no use to either Jim or yourself.

    Hard as it sounds, try to make the most of the time you have to yourself, and remember that you will be thinking about it a lot more than Jim will. So of the two of you it is probably you who will feel the parting the most.

    Sorry if this sounds a bit harsh but that is the life of a carer.

    All the best for next week

    Barraf
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Angela, can I second what Barraff has said. Try not to be too hard on yourself, you need this time to carry on caring. The parting will be hard, but the week will pass and it will indeed not seem any time at all to your Jim really. Having said that, I know how you feel, it's a rotten illness and my heart goes out to you, sending you a big hug, love She. XX
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Angela

    While I absolutely agree with the others, I know also exactly how you feel. It was the same with me in trying to get Jan to assessment, the three times she went.

    I never did get over the feeling of having betrayed her, stupid though I know that is/was.

    However, it was for the best and I was later able to care for her that little bit better.

    There are no comfortable paths in this journey.
     
  5. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #5 Mjaqmac, Jan 17, 2005
    Last edited: Jan 17, 2005
    Angela, you must take the respite.

    Yes it will be upsetting, but you are at breaking point and as I was told by my sympathetic CPN,

    "If you have a breakdown your loved one will be put in an emergency placement and it will be a place you didn't choose and might not like!"

    (She has a way with words!)

    The week will fly in and will just be another memory soon, but you will have recharged your batteries and it's what you BOTH need.

    Respite is never ideal but it is a small help in coping. You really deserve it. Please don't feel guilty. You are not a robot, just a human being with a very heavy load and sometimes we all need to put that load down and rest. It gives you strength to pick it up again and carry on.
     
  6. Chesca

    Chesca Guest

    Dear Angela

    Listen to Magic, (in fact everybody) who has been through a particularly horrendous time recently with carer's respite. The first cut is the deepest...it's not forever, hold on to that. Just a wee breather to enable you to do your best with recharged batteries.

    Know that we are all here for you, during those times when your guilt, sadness, feelings of betrayal get the better of you, remember to post on here for a little TLC.

    I've been having a few of those feelings today after seeing Mum in her nursing home - they never go away, just sometimes are a little better to deal with than others. Today they're not so easy to deal with.

    Keep in touch with the carers to see how he's getting on and be kind to yourself - it'll be OK, not perfect, but you'll come through.

    Don't forget, when the pain gets too bad there'll be somebody here to share it. Gently does it

    Kind wishes
    Chesca
     
  7. nikita

    nikita Registered User

    Jul 31, 2004
    92
    grans social worker would never agree to her going into respite shw was happier for her to roam the steets and have strangers in her house even when family members were on holiday, s hard seeing her in home especialy when other residents are having a high day ie taking clothes off, fighting etc, i just think gran is still in the best place with 24 hour care
     
  8. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #8 Mjaqmac, Jan 17, 2005
    Last edited: Jan 18, 2005
    Angela when Mum's in respite I visit twice a day. Morning and afternoon, I have to do this to carry out physio needs and medications as my mum's case is very complicated and I don't get respite in a "Nursing" home just residential. She is currently in hospital and for the first time in my life I am not sitting by the bedside day and night. I have not visited for 2 days as I know she will be back in a few days and it will be my usual 24/7 care again. I am being good to myself in order to be good to her when she comes home. Before she went in things had become so strained I sometimes couldn't stand the sight of her. Now I am looking forward to her return and will be rested for the hard physical and mental efforts it takes to keep her at home.

    Be good to yourself for this one week Angela. Then you can be good to him on his return, cry if you like but at least have the time and privacy to do it whilst someone else shoulders your load for a very short time. Respite is no cure all and it is never perfect but it is not always available so take it now with both hands and use it wisely for both your sakes.
     
  9. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    thanks for all your replys Imanaged to see it through ,Jim wentwith my son ,as i could not face the music ,when he realized he was being left ,I spent the rest of the day on some retail therapy.Icant console myselfwith thinking Jim will soon forget ,it does not work like that ,when he first gave up work,7 yr ago he,d had problems with his job for 2 yr mostly unknown to me,as there was never any problems with his memory as far as i could see ,it all seemed to be problems with sight ,after his first scan ,we were told it was a stroke to the back of his head and that was affecting ,message to sight,this seemed right, thoughhe had never felt unwell ,he could not follow the lines when reading once his eye left theplace he moved further down the page the same with writing .he was always very aware of his problems .as things got worse he had 2 more scans ,that ruled out stroke ,then was told it was AD.well 8 years on ,and completly dependant on me i still found hardly any problems with short term memory ,but over the last yr all the strange symptoms set in ,panick attacs, dellusions ,aggression .loss of speech ,but he still knows close family.the only answers i get is every body is different forgive the lenght of this ,but the reason i joined TPwas to find the answers .not that they will do much good now.
    angela
     
  10. Chesca

    Chesca Guest

    Dear Angela

    The only answer is that there are no answers, only shared experiences with which we sometimes can home in on and from which maybe only one person can take away something. It's happened to me.

    You know, just when I think my mother, Mrs Pumblechook, has not the slightest idea of who I am, I can put my head under her seemingly permanently bowed head and give her a smile and she beams a gorgeous smile back at me. So today, we did that and she stumbled out the words that she was so pleased to see me. I'm not sure if she was talking to 'me', normally I just get the smile with a little coaxing, but I rather fancy that she did, just because that is my fancy. I was certainly glad to see her.

    From being a member of TP I have become aware of how individually the effects of AD are, simply because of the individuality of its sufferers. There are some common denominators, though; us. We're all there for you, however a poor substitute for your dear Jim. He'll be back sooner than you think.

    Be kind to yourself
    Love
    Chesca
     
  11. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Angela
    I haven't got to respite care ,yetand I am not looking forward to it.
    I do have some sessions now when I can go out,play bowls ,go to the shops.
    I am just about learning to live with the guilt feelings,at first when I went out I was glad when I could return home
    I wanted to run in and apologise,say how sorry I was for leaving her,sorry for being an selfish swine,and I do love you so much. I even thought about giving up the sessions,but I didn't.
    This site helped ,my friends told me to stop these negative feelings,and asked me what would happen to Peg if I folded up?
    As Chesca says there is a common denominator running through all the postings,so Angela you are not alone we are all thinking about you.please think about youself and your health,we are always here if you need to talk
    All best wishes
    Norman
     
  12. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    thanks chesca and norman
    it is good to to talk to people who have been there.i have a loving family who would do anything for us ,but there hands are tied ,apart from doing my shopping and such ;wich is a great help ,iwill not pour my heart out to them ,because they are all devastated about us both plus i do not have the privacy to speak like that because,jim can take alot in and as he wont let me out of his sight ,i cant go into another room ,so TP is greati will try to be more cheerfull nexed time.
    Angela
     
  13. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Angela, make the most of your break, rest up a bit, get out a bit, pester the home to see how he is a bit, get on here a bit, but most important of all, have a bit of life for yourself, you deserve it. Love She. XX
     
  14. Chesca

    Chesca Guest

    Dear Angela

    I know what you mean about not talking about the sufferer when they are present. I used to meet all bods at the door with the words Hello, I'm the daughter and we don't mention the 'D' word in this house. They understood and worked around it, although a little startled to start with!

    Take care, you don't have to be jolly just be you, we like you in all colours.

    Kind wishes
    Chesca
     
  15. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Chesca
    remember the classic"Does he take sugar"?
    That happens with people with hearing problems too
    Norman
     
  16. Chesca

    Chesca Guest

    Yes, I do, Norm. Think it is because of that series I always make a point of addressing people directly regardless of their disability. At the nursing home I always try to greet the residents even though they are unaware, out of respect for the people they are behind the AD mask.

    Love
    Chesca
     
  17. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    hi all, i totally agree and who knows how much people understand? reading through the posts and my own experiance as shown me that just when you think people have gone beyond the point of understanding whats happening to them and around them they suddenly seem to be quite lucid to the point of making you think you have got it all wrong sadly it doesnt last long but no one can tell when this is going to happen.storm
     
  18. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi all, totally agree, respect at all times, there but for etc. Love She. XX
     
  19. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    re respite

    hi all
    well i have been making the best of my free time ,shop till i drop ,meeting up with old friends ,i have not seen for years,and catching up on unfinished jobs .That is 3 full days i am worn out ,but it was great .however things have not been so good for my poor hubby ,it seems he has been terribly upset and even more aggresive than he was on his first stay he has also had a fall even though i keep telling them not to leave hi m walking on his own but they cant stop him as he wont sit down and they have not the staff for 1 to 1 well i know this and it does not make me feel any better.Up to to day we have not visited as they told us it would just unsettle him,but as he seems worsei let one of my sister,s go today ,she said he begged her to take him home ,she pacifyed him and said he seemed bettet when she left.then my son had a phone call a few hours later to say things much worse and they were transfering him to another ward,for more aggresive males and was going to contact his consultant to revue his medication .Now i thought the last few weeks at home he had been very much calmer ,wich i put down to the new medicin EBIXA and i know this aggression is just down to him wanting to be back home with me .so do i see the week out or not,my family think i should .i will see what tommorow brings.ANGELA
     
  20. Chesca

    Chesca Guest

    #20 Chesca, Jan 20, 2005
    Last edited by a moderator: Jan 20, 2005
    Dear Angela

    You're doing OK. Hang on in there. This is a horrendous time for you. I can't tell you what to do, but I do know the impulses borne of love that may drive you to cut short the respite.

    What I learned to accept, with much angst it has to be said, was that anything that would alleviate ongoing stress, the status quo, and provide a calming effect in order that we could have some 'good' time together was worth it in the end.

    The reassessment of Jim's condition by another unit just serves to illustrate the levels of aggression you have been trying to cope with - the medics know the limits from a discompassionate view if you like. As a result of this reassessment Jim may be prescribed some medication to calm him, so that when he returns home he will be more like the Jim you love and can care for with love, rather that than a fighting virago as a result of AD who sometimes drives you around the bend and, dare I say it, hate.

    In the early days, and during her worst times, in my ignorance of her true state, I came to hate my beloved Mum (my driving force and light of my life!) for her, to me, inexplicable vitriol - not her at all. Bitter experience, of course, has taught me a lot - it never was her it was the old AD beastie. Better that I can now love her, she is calm and not tortured, and that gives me some comfort and our shared times are filled with that love. There is never a perfect answer, but there is emotional damage limitation...........for everybody trying to cope.

    You have been a tough, albeit fragmented around the edges, cookie for the last days, and seem to express the benefits of that break positively. Only you can make that decision........... make it with love, not just for Jim but for both of you.

    Above all be gentle with yourself, in order that you can move in a gentle direction. You're doing OK. It'll be OK. Wish I could just give you one big hug - will you consider it done?

    Lots of love
    Chesca
     

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