1. jukeboxgypsy

    jukeboxgypsy Registered User

    Nov 26, 2003
    11
    My mum is 69 and in the final stages now and we are into the 9th year. She has been blind for the last 4 and she has only just been admitted to a hospital. It has taken its toll on everyone although Dad does seem a bit calmer since Mum was admitted. Only dad and I see her on a regular basis, one brother goes once in a blue moon and my other brother for whatever reason doesnt go at all. She doesnt talk any more and they have her tied to a chair. Dad and I take it in turns to go up every day and take the strap off while we sit with her. She could be hard work sometimes before the Alzheimers but I cant stand it any more...I miss her so much. I just wanna tell her the ordinary stuff...that i've had a **** day at work, I've just completed my cert ed and I will graduate next July (I know she would be so proud of me), and two her granddaughters are really lovely etc etc. Most of all...I just want to hear her tell me everythings gonna be ok
     
  2. JoJo

    JoJo Registered User

    Sep 25, 2003
    38
    Shropshire
    Gypsy

    My heart goes out to you and your comments reinforce what a horrible cruel thing alzheimers is. My father is only recently diagnosed and I dread the day he slips away from us mentally.

    I've been told with Alzheimers you mourn twice - once when the person get so bad they are not themselves any more and once when they do die.

    Alzheimers is the only disease I can think of that takes away the very essence of who you are and I can't believe more isn't being done to research it.

    All I can say is talk to your mum and tell her everything anyway - it may mean nothing to her but it will make you feel better.

    JoJo
     
  3. gemini

    gemini Registered User

    Sep 8, 2003
    69
    Nottingham
    Dear Gypsy

    I 'm so sorry to hear about you're mum.

    Like JoJo this is new to me also. My 69 year old mum in law was diagnosed with alzheimers in April this year.

    Like JoJo I do feel you need to continue to talk to you're mum. The fact that you KNOW she would be proud of you and her grandchildren if this awful disease hadn't stolen her away from you, should in a small way bring some comfort.

    You should also try and take comfort from the fact that in the absence of you're brothers, you are obviously being a tremendous tower of strength to you're dad. You should be very proud of yourself for doing everything you possibly can.

    Regards

    Gemini
     
  4. jukeboxgypsy

    jukeboxgypsy Registered User

    Nov 26, 2003
    11
    Hi

    Thanks for your comments. I appreciate them. I have been reading the posts for a while now and I can sympathise with most of them. The anger, frustration, sadness that you all cope with because of this cruel disease. Initially, I couldnt cope, then I learned to put up this invisible wall which somehow kept me apart from it all. From time to time, the wall crumbles. At the moment the wall is not there and it is taking all that I have not to fall apart. However, it has helped reading your stories and knowing that I am not alone.

    Kind Regards

    Gypsy
     
  5. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear Gypsy
    Oh how my heart goes out to you - you put into words exactly how i felt a year ago, although Dad is still with us in body. I have the same problems as well supporting a mum, while 2 brothers and a sister pretend it's not worth bothering about anymore. Coincidence i am a teacher as well. Just remember let off steam on the site, put what you feel - it has done wonders for my grieving - i'm through the stage, love dad dearly as he was but when i see him he is not my dad, desparately grasp how he was!!
    Enjoy the contact - Dad loves having his back rubbed and answering his nonsense conversation!!!
    Take care speak soon Susan
     
  6. Jpr

    Jpr Registered User

    Dec 26, 2003
    28
    berkshire
    yup, ita a b~*#*er

    i agree, keep talking to your Mum. I've worked as a nurse for a long time and am continually amazed a little windows of perception in people with apparently advanced disease.

    Speaking as the daughter of a mother who died through dementia, I know the talking helped but did not make up for the lack of replies or hugs.

    I would also change the comment that with Alzheimers you loose your loved one twice - I think you loose them again at every stage.
     
  7. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Continuous mourning

    Couldn't agree more with Jpr - I feel I have been in a more or less continual state of mourning for the last 7 or 8 years - at first when it was clear that something was very wrong, then when a possible diagnosis of AD was suggested, then throughout 3 or 4 years while the medics tried to find out what the diagnosis actually was (my husband was then in his mid-50s and the presentation wasn't quite typical at that stage) - then when it was confirmed, and also throughout this whole process every time a deterioration appeared every few weeks or months...

    And now I am having to go through it all again, as after a week out of hospital to try to see if I could manage now that he is on increased sedation, he had to be readmitted (this time almost certainly for good, either in hospital or a care home). Last Sunday, after a very disturbed evening and then with him getting up and getting dressed (or trying to) at least 10 times between 10pm and 1am, I thought he had fallen asleep properly, and fell asleep myself. I woke at 2am to a strong smell of gas. I rushed downstairs where the smell of gas was overpowering, to find him asleep in the sitting room and a gas tap turned full on (but not lit) in the kitchen. If the Central Heating boiler had started up, we and our neighbours could have been blown to Kingdom Come! I think he thought he was opening a door handle (his main preoccupation).

    I turned the gas off, turned the CH thermostat down to 0 degrees, and threw open the doors and windows. I had a terrible headache which I assume was from the gas. I decided that there was no way I could go to sleep after that, and it became clear to me that he had to be admitted ASAP, as I couldn't possibly deal with this by staying awake 24 hours a day.

    So first thing Monday I phoned his CPN and he was admitted that day. He actually seems more "at home" in the hospital, as he was extremely confused in the week he was at home, couldn't find the toilet and behaved as though he was in a strange place.

    I've had to act reasonably cheerfully over Christmas as my sons and their girlfriends have been visiting and I was invited to Christmas Day at my husband's brother's - but really I feel I just want to crawl into a corner and howl for as long as it takes - but can't be a party pooper. Not a good time to take the next step in losing my dear husband. It's the first Christmas we've spent apart for over 30 years, and our 29th wedding anniversary is on Sunday.

    I have had it up to here with being "strong" and presenting a reasonably cheerful and competent face to the world. I want my life back. I would like to tell people who bemoan the loss of a loved one through a sudden heart attack or stroke that they don't know how lucky they are! (Which would be very unkind, I know).

    Can one actually ever recover from this prolonged and unresolved state of mourning?

    Not a good day.

    Love to all of you who know what I'm feeling right now.

    Ruthie
     
  8. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,704
    Female
    Dundee
    #8 Izzy, Dec 27, 2003
    Last edited: Dec 27, 2003
    Oh Ruthie - I've just read your post. My heart goes out to you. I would like to say something comforting but I have no words to help. I know I have all of this to face myself in the future. What makes it hard is not knowing how long this future will be and how long things will be as good as they are now. I do appreciate that things are not bad just now but I dread every week in case it brings a deterioration. Our 25th Wedding Anniversary is on the 29th. We are lucky enough to be in a position where things are still good (in comparison to what I read about other people's experiences) so will enjoy our anniversary together in a very special place. I will treasure this day more than any other as I know we may not have many more anniversaries to share in this way.

    I know what you mean about people losing someone suddenly and I hate it when I have to admit that I wish that there was a sudden end to this disease instead of having to watch my husband become someone he would never have wanted to be. I can emphathise with you wanting to hide away. Even at this stage I feel like that sometimes as no one really knows what its like to think how things have already changed and how they will change in the years to come.

    I feel so much for you.

    Take care

    Izzy
    x
     
  9. kim77

    kim77 Registered User

    Dec 23, 2003
    2
    surrey
    I'm new to all of this, not just the discussion group but also I'm new to dealing with the effects that Alzheimer's has on the whole family.
    My dear mum was diagnosed just over 3 weeks ago. We are only in the first stages of this cruel disease but it breaks my heart to see my mum going through it.
    The irony of the situation is that for her whole life my mum has been a carer for patients with all sorts of health problems from people with a neurological illness as well as the patients who had the smallest learning disability. We even had a house attached to ours where 3 residents lived, all transferred from a local psychiatric hospital. They now sadly have all passed away but whilst they were alive my mum made them part of our family and that's exactly what they were.
    She is the most loving and gentle women who has worked her fingers to the bone all of her life. Unfortunately, my dad is a very difficult man to live with at the best of times and he hasn't grasped the severity of the situation and is still telling my mum off for loosing things.
    How we're all going to cope I just don't know, I have made the decision to stop work when the Alzheimer's gets worse and become her full time carer. That in itself is a problem as I have a small son and my partner and myself struggle as it is to pay the mortgage.
    There are so many questions that I need the answer to but no one to give me the answer, like for example how long do I have with mum before things get worse. I'm getting married in August, will my mum be able to understand what's happening.
    I've found it a comfort to read some of what has been written on these discussion groups, even just to know that there are people who are having the same thoughts of mourning for someone who is still here and who are going through the same sense of loss.
    Although the new year is likely to bring with it a whole new set of problems, may it also bring with it a whole new set of solutions.
     
  10. Jude

    Jude Registered User

    Dear All,

    One of the most heartbreaking things is to watch loved ones fall apart in front of our eyes every day. They become the shadows of their former selves. Probably there isn't one of us who hasn't wished that they would just die peacefully in bed one night - and then felt horribly guilty for even having these thoughts.

    Some of us have great support from other family members and some of us have no support at all, because our siblings can't handle the tragedy of it all. We can't and must not blame them.

    We, as the carers, are the ones who have to be strong, to bear the grief and pain of every day and somehow soldier on regardless. We cry in private at night; scream inside or make lighthearted or silly jokes to deal with the trauma and heal our wounds on a daily basis. Somehow, we continue and we wonder from where on earth we get the strength to do this....

    One major comfort is being able to share our tears and fears - and this forum is a wonderful medium to do just that. I doubt that any of us has a brilliant social life just now - but being able to log in and share experiences is of invaluable help.

    Hang in there...! Jude xxx
     
  11. jukeboxgypsy

    jukeboxgypsy Registered User

    Nov 26, 2003
    11
    Hi Kim

    Sorry to hear about your Mum. It was a long time before I could get anyone to recognise there was something wrong with my mum and I was so busy being angry and confused with that I didnt understand the disease or know about medication until it was too late. I know its small consolation but you do know whats wrong with your mum now at least you can play an active part in trying to control the situation. I wish I could tell you that it gets easier and how long you have your mum for in this early stage, but I cant. Apart from the three stages of Alzheimers and the similarities of the symptoms during each stage there appears to be no pattern as to how long each stage lasts. All I will say is, dont spend your time being angry and fighting the illness, enjoy the time with your mum. I am guessing you already have lots of happy memories of your mum......make some more!! Accept the strange behaviour and above all look after yourself and your family.

    Take Care
     
  12. kim77

    kim77 Registered User

    Dec 23, 2003
    2
    surrey
    Thank you so much for your reply.
    I'm a real chatty person and I'm afraid the rest of my immediate family aren't. I have a very close friend who I can talk with till the cows come home, but to discuss the problem with people who are going through the same thing is a god send.
    I will take your advice and make sure that there are a thousand more happy memories to look back on, when looking back is the only thing that will keep me going.
    I look forward to making some good friends to talk with on this disussion site.

    Kind regards
    Kim.
     
  13. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear All
    Have spent the last 30 mins catching up on all the posts. Hope we all enjoyed Xmas as best we could. Nice to see all the new members writing their experiences down.
    I have have been in a denial period for 2 weeks, just couldn't face seeing dad. Went to the home on Boxing Day, found him dribberly and non responsive - hate visits like that - but he was clean and comfortable and that is all i ask for. i haven't even given him his Christmas card, as i know he won't know what it is - My guilt is now coming out and thats why i am having to write on the forum - sorry to bore everyone - just a bad patch - it will pass.
    Wishing everyone a happy new year through thick and thin, good and bad days.
    Speak soon Love susan
     
  14. Jpr

    Jpr Registered User

    Dec 26, 2003
    28
    berkshire
    Kim77
    What a sad and confusing time lies ahead for you. My brothers and father (and mother) were all at varying stages of denial for years, aggravated by the misguided doctors declining to give Mum's illness a diagnosis. As a result Dad did not as much support from family, professionals and friends as he might. How he managed I will never understand. Yes he got cross at times, especially when Mum lost things or spent hours getting ready to go out of the house. Mum used language he didn't know she knew but he kept being there for her. Unfortunately Dad never accepted any respite - she was never 'bad enough' or she would never accept that he needed a break and after about 5 years Mum was sectioned (this was in Canada where the support systems are different).
    I have since found a very good book that would have helped Dad and us reduce some of the worst 'stress points': Learning to Speak Alzheimers by Joanne Koenig Coste. Like all books not all of it applies to every situation but it might help you.
    I don't know if it would be easier or more difficult is we could predict more precisely how this dreadful disease would affect each individual. I do know you have to 'cease the moment' and make the most of the 'not so bad times' and rejoice in the glimpses of 'your real mum'
    Whatever happens take all the respite you can wrangle, and get the support of your GP - and your Mums, CPN, district nurse and local Alzheimer’s group.
    best wishes
    Jill (jpr)
     
  15. Jude

    Jude Registered User

    Dear Jill,

    Many thanks for the info on the book - do you happen to know the ISBN number. It sounds really interesting.

    Jude
     
  16. LesleyAnne

    LesleyAnne Registered User

    Apr 1, 2003
    4
    London
    detail of learning to speak Alzheimer's

    Hello Jude
    the details of Learning to speak Alzheimer's by Joanne Koenig Coste are ISBN 0091886724 Publisher: Vermilion an imprint of Ebury Press, and you can view online details here at www.randomhouse.co.uk. Hope this helps
    best wishes

    Lesley
     
  17. Jude

    Jude Registered User

    Dear Lesley Anne,

    Many thanks indeed for the info. Do hope you have a very Happy New Year.

    Jude
     
  18. Helen_old

    Helen_old Registered User

    Dec 29, 2003
    26
    WALES
    Hi everyone, I know I'm a new member but i already feel I'm not alone when I log onto this site. I'm grateful for the support today as mum has had a bad day. She had a good day yesterday & seemed in very good spirits , the best she has been for a long time. We didn't do anything special it was just an ordinary but happy day. Nowadays i cherish days like yesterday. However as always seems to be the case, a good day is followed by a bad. Today she seemed very confused & frightened & could not make even a simple sentence without a real struggle. She was frustrated & said she felt like screaming because her brain just wouldn't work. When she feels like this i try my best to help her explain how she is feeling as it seems to help her let of steam & she seems much calmer afterwards. Mum kept saying she felt like she was in the wrong place. Suddenly she became very articulate & said she felt as if she was visiting somewhere she used to know very well when she was younger , but had not been too for a long time. She felt as if she should know everything very well but didn't . As if she had travelled by bus, but having got off, she was suddenly not sure she had got off at the right stop as she didn't recognise anything anymore & felt lost. A few seconds later the fog seemed to descend again & she seemed confused. I find it hard to know whether she just doesn't understand things anymore or when she does but just can't find the words to reply. In the past she has said she feels as if she is trying to make herself understood in a foreign language & is worried & embarassed that people won't understand her so says nothing . I'm sorry for writing like this but i've been feeling very sad today, & family & friends just don't seem to understand, so i hope you don't mind me letting off steam. I wish they'd hurry up with mums diagnosis.

    However I know 2004 will bring lots more precious moments & I hope I can make the most of them.

    HAPPY NEW YEAR TO YOU ALL

    Take care all

    Helen
     
  19. jukeboxgypsy

    jukeboxgypsy Registered User

    Nov 26, 2003
    11
    Hi Helen

    Dont worry about letting off steam. We all need to do that sometimes! It has helped me just being able to put down into words what I feel. So if it helps to have a scream, shout or even just a good old moan.....just you go ahead and do it.

    Take Care
     
  20. Helen_old

    Helen_old Registered User

    Dec 29, 2003
    26
    WALES
    Hi Gypsy

    Thanks for your reply ,It really helps to know others understand. I know its selfish but its also nice to know i'm not the only one still awake. Can't seem to switch off today.

    Take care

    Helen
     

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