1. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    #1 gigi, Nov 20, 2007
    Last edited: Nov 20, 2007
    Although I use a computer at work my skills are basic! As are my "dealing with AD" skills. My husband was diagnosed June 2006 following an MRI scan and in depth history- I suspect the onset was at least a year before we got to that point.He also has a degree of Vascular Dementia. He is 71, I am 54. I still work 14 hrs a week over 4 days and have good support from the local teams. A sitter 2 mornings a week for 4 hours and access to a day centre on a Friday which he hates! He can wash and dress and make a cup of tea-occasionally cut the grass but feel he is dissolving into his armchair! This man is a brilliant pianist but needs to be reminded to play. Used to play golf 3 times a week and had such pride in his garden. Everything now is my responsibility. He was stopped from driving a year ago and continually tries to keep his memory going so that "they" will let him drive again. I have other family responsibilities too. My husband has 2 daughters who now live in Australia. I'm tired! Am planning a break in April next year with an old friend-she's booked tickets etc. all I have to do is find somewhere for my husband to go-this now terrifies me! He will not like it and will refuse to go-as he does the day centre sometimes-but I need a break. Have tried holidays with him -it's not a holiday for me.Does this sound selfish? He sleeps a lot-probably 12 hours a day and needs me to keep him going. His mobility is worsening and he needs to know where I am & what I'm doing. I leave notes and phone numbers when I go to work and try hard to reassure him. Am concerned now that putting him into respite care will make him lose his trust in me- also am worried about how I live with him when I break the news to him-which I haven't yet and won't until nearer the time. By the way- he maintains he does not have Alzheimers-his memory is better than many peoples-he has "perfect eyesight and hearing" and is obviously not facing up to it. I try to understand from his point of view-but that doesn't help me! I know there are lots of you out there with much worse problems and hope to be of some help to others-think I'm going to be here a lot!
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Gigi, have no answers for you. Just wanted to say warm welcome.

    Your scenario is all too familiar, but suggestions and answers depend so much upon the persons concerned.

    I guess I was fortunate in that Lionel accepted so much "just for me". He went to day services, and respite in the early days 'just to give me a break' But he reasoned his own illness, and recognised where it was leading.

    As you say, your dear husband does not accept his illness, maintaining that he is O.K.

    Feel sure someone will comealong soon with some suggestions.
    Thank you for sharing. Take care,
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    Hello Gigi, welcome to TP.

    You are a lot younger than I am [I am 65], and you are still working, which makes caring much more difficult.Even if you only work 14 hours a week, you will have to have a timetable on the days you work and timetables and Alzheimers are incompatible.

    My husband knows he has Alzheimers but on good days, he says he doesn`t have `full` Alzheimers, or his Alzheimers has been cured. He too comments on his good eyesight [he has cataracts] his perfect hearing [true] and his robust state of health,[???]. I think if he did not have these positive images he would lie down and die. I just wonder if your husband is still clinging to his strengths to keep hope alive.

    As far as your well being is concerned, you can only take all the help that`s offered. Living with Alzheimers is draining.

    I hope you will continue to post on TP. There will be a lot of support here for you. It has been a life line for most of us. It doesn`t solve our practical problems, but does give us an outlet for our frustrations.

    Take care xx
     
  4. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Take each day as it comes

    Hello Gigi,
    Welcome to T.P. There always seems tobe someone on line 24/7 and I have found it invaluable. My husband is 62 and in E.M.I. Unit since May. I sat down with Peter and explained that I needed a rest (I am disabled) and wanted him to be somewhere safe so that I would not worry. He did go in to respite for a week and I just stayed at home resting. Unfortunately, due to the nature of the illness, we have to make some very hard decisions.
    You know your husband better than anyone. Only a thought but perhaps he is in denial due to loosing your love. I know they do think along those lines.
    Best wishes. christine
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #5 Margarita, Nov 20, 2007
    Last edited: Nov 20, 2007
    Welcome gigi

    I have been caring for my mother for the past 5 years and had all the concerns as your having about respite also in the early days my mother did not like day- centre so thought also she would not like respite and I was right , even thought mum also said they was noting wrong with her she went alone with it because I told her I needed a break as I was not feeling well .

    I wonder if they say they nothing wrong with them is because they feel to proud to admit they anything wrong so the reality they create in they mind make them feel safe in they world in they mind eluding themselves , so I would rather leave mum to her reality then bring her in to mine, and I learn to work around it.

    little white lies seem to make her feel secure in where why she was going to respite


    No the feeling about when you say your tried , take as many brake as you can and don't feel guilty about it, because its those brake that give you the energy to keep going
     
  6. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Gigi
    welcome to TP.
    my wife never admited that there was anything wrong with her,other than a bad memory.
    This however is quite common however,"being in denial".
    My wife would not have accepted repite in a NH.
    I made arrangements with the SW for a live in carer,she moved in and I went away.
    Instead of 6 respites in a year I accepted 4.
    The cost was about the same as 6 respites in a NH.
    Have a look at this fact sheet.
    http://www.alzheimers.org.uk/factsheet/462
    Hope this is helpful
    Norman
     
  7. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi gigi,

    I also welcome you to TP.
    Absolutely not! through my own ignorance I didn't know about respite until 12 months ago and mum was diagnosed in 2000. Mum was placed in care 6mths ago and from reading others posts and speaking with other carers the respite is very beneficial.

    Fingers crossed it all works out well for you and you enjoy your April break.

    Regards Taffy.
     
  8. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Thanks!

    Thanks to you all who have taken the time to read and reply! It really has made a difference to my day- I know I'm not alone and that in itself helps! My husband has to see the consultant tomorrow and is getting very edgy about it...will let you know how we get on.He is on the maximum dose of reminyl-hard to say if it's helped or not. Apparently while I was at work thismorning he sat and watched the share prices falling on teletext- t.v. is his real world now. It's such a gradual decline sometimes you only realise that when you think back a few months to how he was then. Will keep in touch1
     
  9. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hi Gigi,

    Fortunately computer skills and AD skills are not a pre-requisite for posting, as otherwise I for one certainly wouldn't be here!

    My Dad is 82 and suffering from dementia although we are still not sure which type exactly. The result is pretty much the same.

    My Dad refuses to accept that there is anything wrong with him, refuses to believe that he has had a stroke (2 in fact) and it is the rest of us that have a problem.

    My Dad was stopped from driving in May and wants me to help him get his licence back. He thinks that all visits to the doctor and consultant are in an effort to get his licence.

    My mum still works although she is considerably older than you at 77. She finds it a break and to be honest if they were together 24/7 they would end up killing each other. He gets very angry with my Mum but if she is not there he cannot cope. One minute he says that he is going to go and live somewhere else and that he doesn't need any help and the next he is ringing my mum to ask her where his glasses are. My Dad like your husband is able to manage for a few hours a day but any longer than that and certainly overnight would be impossible. Holidays are probably a thing of the past now for them as a couple.

    It sounds as though you have a lot on your plate and no one you can call on to help share the burden. It also sounds as though you need a holiday and I hope that you can achieve this and that you find care for your husband. If we needed respite for my Dad at this stage we would certainly look at him being cared for in his own home as moving to a care home would be extremely traumatic for him.
     
  10. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Sue-thankyou. That's reassuring-and to hear your mum is still working at 77-what a lady! I find it hard to leave Eric(my husband) to go to work-his face falls and he has told me he worries I may have an accident and not come back-so he knows he depends on me! I have a very responsible job(I work as a practice nurse for a local GP who is very understanding)-I think I'm reaching a point with the sort of work I do and my home life are too similar! Sometimes I feel like going to work at the local supermarket! Won't make any rash decisions-am aware am tired. Have had an awful year-my son tried to commit suicide in May and am only just getting through that. It's like anything extra than the caring of Eric is VERY extra and you could do without it but have to get on with it! Am so glad my son persuaded me to use his computer while he's sorting himself out- and that I found TP. Good to be in touch1
     

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