The sky is blue. The sky is blue. The sky is blue. The sky is blue.... x 100

Discussion in 'ARCHIVE FORUM: Support discussions' started by JT13, Aug 15, 2006.

  1. JT13

    JT13 Registered User

    Aug 9, 2006
    41
    Dear All,

    (I used to use a different nickname... but had to change for anonymity.)

    Yesterday, I got burnt out. We've all been through this. Listening to a story being told, over and over and over again. What takes 4 minutes to tell, being repeated, lands up taking 20 minutes. The next thing the person says is again repeated. So 10 minutes of conversation is looped over and over, taking up 1 hour instead.

    I know, it's a small issue to many but admit it, it does affect us all over time. Am feeling overwhelmed when I have other things to juggle such as my own parents, work, relationship, etc.

    I've started jotting down the patient's daily progress, taking Brucie's sample journal as a guideline.

    Don't know how long I'm going to be able to to do this. Just needed to write and let out a little steam before I blew up. Thanks for listening.
     
  2. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hello jt13

    i can understand what your saying i was there not so long ago, i thought id go mad but now mum hardly speaks and i long to hear her say something..anything,
    i suppose what im trying to say is even though the repetivness can drive you crazy you dont half miss it when its no longer there
    take care x
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    #3 Brucie, Aug 15, 2006
    Last edited: Aug 15, 2006
    Hi JT13, and welcome back!

    Yes, i know it is very wearing, but firstly, I always told my self that, to Jan [Janice], each time was the first time she was saying whatever it was. In such a situation, just how confusing to have your most trusted loved one snap at you or take it badly. What a bash to the confidence that is already so low.

    So we need strategies to deal with it - not for them, but for us.

    Imagine you are being auditioned for a part in a big show, or that you are rehearsing for such a show. The script/routines etc need to be both known, and fresh each time you say them or do them.

    So treat the conversations as a weird audition. Change the inflexion of your voice each time you say the same thing. Perhaps don't say the same thing in reply - perhaps a different reply will take the conversation elsewhere.

    I know from experience that when faced with a repeating conversation, I would restrict myself to monosyllabic replies and grunts after the first few times, until I began to treat the whole things as a variant of the old Reader's Digest piece "Towards more picturesque speech". Use different words, tones, etc. Just to keep yourself sane!

    And yes, of course, it is difficult to juggle with the rest of life. Grrrrr!

    Great! that did help me a lot - I'm still doing it after 15 years. Over time, the detail and timing of my notes has changed according to circumstance. Also, as Jan's condition has deteriorated, there is less variation from day to day.

    When I was 10 I kept a diary which my Mum would sneak a look at sometimes. Each day would be very much the same and read as:

    "Woke up. Had a banana sandwich for breakfast. Went to school. Came home. Went to bed."

    (well maybe not quite so boring)

    Sometimes it is good to record the same thing over and over. It means life is stable for a while.

    Over recent days the diary with Jan has read:

    Finally able to make the trip to Jan. [after my operation]
    Jan was on her side in the soft room but raised herself when I joined her. It was quite difficult because she used my belly to lever herself up, and that is not good after my op.
    We did get some acknowledgement. I use 'acknowledgement' to mean a twitch of a smile, perhaps even a word, most often a feeling that she has known it was me with her. What it is all about

    next day
    Not able to make consecutive days yet awhile.

    next day
    Jan was trying so hard to get on her knees and she did make it once, after trying for 40 minutes. I talked to her as usual and I’m sure she knew somewhere in herself that it was me. So difficult though.
    Oh how I miss her lovely smile, her laugh, her music.

    next day
    Did not visit today

    next day
    Jan was on her side when I arrived and it took most of my visit for her to be able to get to her knees, something she desperately wanted to do. I gave her companionship, that’s all I can do now.


    Good luck
     
  4. jarnee

    jarnee Registered User

    Mar 18, 2006
    181
    leicestershire
    #4 jarnee, Aug 15, 2006
    Last edited: Aug 15, 2006
    Hi JT13

    Brucie's tips are great ( as ever)

    you are right I think we have all felt like that....I know I have and I haven't been doing this for anything like as long as lots of people here.

    Don't beat yourself up....you're human and you have millions of other pressures in your life ( if you're anything like most of us !!)

    However, losing patience once in a blue moon is one thing, but increasing guilt due to becoming less patient with your loved on a long-term basis is another pressure you can do without. If you really are at the end of your tether, why not give yourself a break for a while.

    Donna has a good point, too.....I know I'll miss dad dreadfully when he's not here anymore.

    Soemtimes when he's telling me the same thing again or asking the same question I've just answered 3 times, I ask myself, "If I wasn't doing this, what would I be doing?" and 99% of the time the alternative is something that can wait.
    When I was a teenager, I was in a VERY serious car crash and was lucky to survive with all my limbs intact( let alone my life). I KNOW in my heart that if I had been SERIOUSLY injured/diabled in any way, my dad would have devoted the rest of his days to caring for me.......I just tell myself that I was lucky then, but he's not so lucky now.
    It puts everything into perspective for me. He's still here. He CAN still talk. He CAN still smile and laugh. How blessed are we??



    Stick in there JT13....we're right behind you

    Jarnee
    xxxxxxxxxxxx
     
  5. road2nowhere

    road2nowhere Registered User

    Wow

    Having just read this thread, I am full of admiration for how you are all coping. I only hope that when the time comes with Mum, that I will be able to do likewise. There are times when I feel like banging my head on a brick wall (did it once out of sheer bl**dy frustration - OUCH!) and I simply run out of "cope", so how I will manage, I really don't know! :confused:

    It really is a case of "one day at a time".

    Thank you for sharing your experiences and taking the time to be there for us.

    xx
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Road2nowhere

    The whole thing, I have found, is a learning experience.

    At first there is the stage "why are they being so difficult. It would be so easy if they would just...do this or that" ...but they don't of course.

    Then there is usually an angry stage, anger at them for being such a pain and disturbing our lives, anger at the dementia for doing this to them, anger at ourselves for not being able to cope, and anger generally.

    The final stage I have reached - via more stages in between - is actually a technique that is classically used by sales people called SPIN. This is an acronym for a process that includes understanding the Situation and the Problem, figuring out the Implications and finally working out the Needs. It does actually work, at least for me.

    Some sales people are in your face "Buy this, you bas***d".

    Better sales people ask "what do you need and how can I be of help to you"

    So, nowadays I simply ask myself - for Jan can neither easily understand me or make a recognisable reply - "what may be causing this behaviour and what can I possibly do to try and help her?"

    It ain't easy, but once things become patient-centric, then a lot of pieces of the jigsaw fall into place. Many people simply don't have the time for that, having families, jobs, lives to consider. We also have to realise that.
     
  7. JT13

    JT13 Registered User

    Aug 9, 2006
    41
    Thanks guys...

    Dear Bruce,

    Thanks a bunch for your support. Your method works very well, to a certain degree. In my case, she is quite a domineering person all her life. It's especially enhanced with the onset of her forgetfulness and condition. The only way is to just quietly go on. I've tried your method of changing the topic... however, due to different personalities, the outcome is different. She likes to talk, not listen. Even when I do manage to change the topic, it's the same thing. Most of the conversations is about her reinforcing her dominance. It's more of letting her speak and just be able to provide her a listening ear. I have already accepted that long ago... just that sometimes, it tires me out when coupled with so many other things happening.

    You're very blessed with a wife who is so loving and tender hearted personality even prior to Alzheimer's. I really feel for you and wish you all happiness. You have wonderful memories with her, hold that close to your heart, don't ever let it go. Her memory may not be as it used to be, but her heart is yours. No one can take that away from you, not even Alzheimer's.

    Thank you to everyone who's been here to give me support. I do hope that I too can provide you the same support as we all have our bad days. We all feel because we have the heart to care. Sometimes, it bleeds for whatever reason it may be.

    I do pray that each time we feel down, we know that we're not alone. We have each other.

    Regards,
    J

    P.S. To those who don't know, she's someone else's mother. I care for her because it's only human to do so and the right thing to do.
     
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I cried myself to sleep last night. because memories of how my mum was before she was given medication is coming back to her reparation of listening to the same music, same video, same conversation and I am scared of seeing my mother like this again I am scared I am going to crack and I shall be the one that go really mad .

    No respite is going to make me feel better. They don’t tell you this do they .they tell you just look after yourself they don’t tell you that stress give you panic attack that suicide thought came in to your mind yes I said it . its how I feel I am not going to do it , but seeing someone trun into someone you don’t know is a living nightmare and there no end to it till they pass way .so I look at my mum try put myself in her shoes , gosh not for long or the sadness will eat away at me .

    Thanks Bruce I always wanted to be an actress .so I shall smile and play my part well .
     
  9. JT13

    JT13 Registered User

    Aug 9, 2006
    41
    It's ok

    Dear Margarita,

    You're right, truth is... it is damned difficult. No website tells us exactly what will happen. They can't because each human being is different and each experiences different things.

    Taking time off to recouperate is temporary... because we still have to get back to reality and face the blunt truth. However, it is necessary to take a little time just to breathe before we choke. I know exactly how you feel.

    After all this time, I've begun to learn that the battle we face is not with Alzheimer's. It's there and it's not going away anytime soon. The real battle is within ourselves, on whether/how we can emotionally detach from the situation and look forward to the next day. Sometimes we manage to win the battle, sometimes we loose and feel entirely low. Just know that I'm here for you if you need a listening ear, we're all here for you. It's okay to feel down. It's ok to feel suicidal sometimes. It's ok because you're flesh and blood.

    If you ever need anything, just give me a buzz here on TP. Maybe for now, it's difficult to see the blessings we have in our lives as it's so covered by the sadness. Just remember, you have a friend here whenever you need.

    *HUGS* it will be okay soon.

    J
     
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Just wanted to show how had it is on the carer looking after someone with AZ and not being able to get a CPN to talk to me about it because they want to change the image of dementia. It is as if they want to sell a product . They seemed forget that a carer is not trained in physiology when it comes to dementia.

    thanks for those words JT13



    I have been mental drag in and out of my mum past that it can be mind blowing. I am sorry for saying that so openly in a public place. Just that some time in the middle of the night I feel so alone on this issue with dementia, it was like that in the early stages first few years. Its horrible feeling it dose pass I know.

    Then I think that there must be so many other people out there that do not have the internet to share. I can’t be alone on this feeling that there needs to be more training understanding for both the carer and the person with dementia. That it is a physiological mind trip. Oh it’s just me I I’ll shut up now.

    All I know is that I never felt like this before I did not care for my mother
     
  11. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    I don't if it's quite the same as I feel, but your statement really struck a nerve. How many times do we hear that AD (or other dementia) may magnify the personality of the sufferer? How about the effect of maginification on the carer?

    For me, I think I have to recognise that it is magnifying certain traits in me... for good and for bad..... I'm not about to give a full confessional here :)o ) but mum's vulnerability, my frustrations (internal and external) have certainly heightened my awareness of myself, my weaknesses and sometimes my strengths..... that's BEFORE I start on my soapbox about my changing views on society generally....

    This IS a learning curve no-one would inflict on their worst enemy ... but as long as there is learning then there must be SOME good come out of it somewhere, for someone.....

    Just my way of looking at it.....

    Love Karen, (TF), x
     
  12. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Karen you are so right.
    I have found patience that I never knew that I had.
    To be woken in the middle of the night and not loose my temper,to accept what was happening and cope with it and put it right.
    The ability to cope with situations that I would never have believed I could.
    To find the right answers to the repeated questions and to be calm and patient.
    To find the right answers to questions about the cat that isn't there,it's my shoes she is talking to.
    Trying not to criticise,to rebuke or scold when the situation causes me worry and work.
    To walk away rather than argue,go to another room and have a good cuss in private.
    My crutch through all this is to tell myself that whatever happens "It is not Peg's fault"to continue to give support and love for as long as it takes,and that may be many years longer yet, but I will always love her dearly although my own Peg is not there all the time now.
    Norman
     
  13. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi,
    My Mom too does not talk in repetition now. She talks jibberish. The repetition did about drive us crazy but now it would be nice to have it because there is no conversation at all. When she was in her repetitive stage, I would throw questions in to throw it off. For instance, she always talked about seeing a man and a dog on her walks CONSTANTLY ! I started asking her questions like, what did the dog look like? Was it big or small? Brown or Black? etc etc. It got her to stop, think about it and made it more tolerable for me. You might try it.
    I was mostly aggravated when Mom would talk about my sister in law, blasting her every action over and over. I finally had to tell her I did not want to talk about her. From then on I would change the subject when she came up, sometimes it worked and sometimes she would keep going back to it. But it isn't good to feed a negative tendency, so I just wouldn't discuss it with her.
    Hang in there, this won't last forever. The one thing we can count on with AD is change.
    Debbie
     
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I finally spoke to the CNP .his my brother CPN he know my brother for over 20 years since he been under them he told me that I need to get my doctor to refer my mum to see the psychiatric doctor for the elderly. Then phone him back CPN to get concerning (sp) for me .

    He said that my living condition and living with someone with dementia is putting me under a lot of pursuer stress triggering something me in. can’t remember the exact words ,but he said my mum dead I am living in a living death.

    My mum die then when my father had he heart attack strangely telling me this help in some way when mum was going on about something silly about boyfriend. I look at her in a different way. I never lied to my mum before so I look at my mum when she said something to me I lied to her .I was thinking would she know she always new when I was a child ,but my mum dead .this is not my mum. Strangely, when I lie to her she brought up the night my father had a heart attack in front of her and died. I was going to get up and clean up, but she held on to my hand .so I listen I smile she let go of my hand. And ask what was I going to clean.

    My SS worker said when I told her mum dead, that some of mum personally is still there. I should have said yeah so what does that mean.

    I told my daughter that this is not nanny, nanny died that night. My daughter said yeah will nanny has AD.

    Me I just find it so hard to understand. How someone can still be alive, but is dead. My mum a zombie then and I am living in a scare move .

    My the truth be told with out anyone geting Offended in how I have express it .
     
  15. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Margaurita,
    You are right, the person we knew isn't there anymore. My Mom is nothing at all like the Mom I used to have. Yet, there she is ! So who is this person we care for? Not the Mom of my childhood, not the Mom of my adulthood but the Mom that is dying and dissapearing from me. My brother visited recently and hadn't seen my Mom in several months. He was so distressed because Mom kept forgetting he had visited. I told him that Mom knew it at that moment, and that moment meant something to her. AND, her soul knows it even if her mind doesn't. In the next life, I will stand in front of my Mom and she will say to me, " I had brain damage and couldn't think it or say it, but I know you were there and loved me any way."
    Margaurite, you are too stressed. Perhaps it is time for you to think of a nursing home situation for your Mom. I resisted it and hated it but can honestly say my Mom is so much better off in the home now. One of the nice things is that we family members do not have to worry about the bathing, eatting, nursing, or safety of Mom. so when we go, our time is special and without those concerns. We have quality time and that is precious.
    Take care dear, you are not alone and your Mom isn't dead, just changed. Let go and get some help with her care so you can figure out who Maurgarite is again.
    Hugs, Debbie
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #16 Margarita, Aug 16, 2006
    Last edited: Aug 16, 2006
    Rummy.

    I do no the time has come to put my mother in a care home. Because
    I know how good I feel when mum in respite now normal i feel . However, I am dealing with the UK government system who is offering all the outside help that they have on offer to unstressed me and get on looking after my mother. Nevertheless, the truth is they do not want to pay my mother to be in a care home full time.

    I know my mother condition is not going to get better so I look in to my future. Doing forward planning for me.

    I am living in an overcrowded flat that for my children and I is fine. Nevertheless not for my mother with AD who has to walk up down 24 steps to get to my fount door, she fell walking up those step the other day .

    So is the government going to offer me a ground floor flat. I do not think so. They are going to stress me out while I am trying . As I am ringing, writing left right centre. That is stressing me out making me realize what the reality is for my mother future. So be it if it is a Care home. Because the government will not give me, a descent one more bedroom for my mum on a ground floor. But I shall surely try all other root before I give up and hand my mother over to a care home .


    All this stress I am under now is what I was under Only this year when my mother went in to emergency respite, because I was trying to get my brother housing support, because of a mental illness he has .I could not look after my brother and my mother. I got there in the end getting him housing support.

    So hear I am again face with another dilemma. So I shall give the system the befit of the doubt wait a while . And drive you lot crazy yes and myself lol coming to term with it all
     

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