1. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    my husband was diagnosed with dementia in Febuary,I thought i and our daughter could cope, but its come crashing down on us, yeasterday he had me in tears again as he did this morning i know and i feel so selfish, as im crying for the loss of my husband, and for my daughter and i, what do we do when i cant work any more, when she goes to university im so in a muddle, how do we all carry on?i so wanted a life,
    and yes this is a good day.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Linda

    It is devastating, I know, the loss of everything we planned for the future, and our present too.

    Not much I can say to help you, other than that there will be better days, there will be worse days, in the time to come.

    Try and take things a day at a time - sometimes that will need to be reduced to an hour at a time.

    It is a bummer, but there are [too] many people on TP who know and understand what you are going through. Do use TP to question, lament, shout or simply be part of a community. That community has some amazing people in it.

    Take care of yourselves
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Linda,
    It is very early days, you will cope. Try not to look too far ahead at the moment. Is your husband OK being left at present whilst you work? I know that there are others who have arranged care for their spouse so that they can continue working. I am sure that they will be able to offer you some advice.

    It is natural that you and your daughter are grieving - this is not what you expected or hoped for. Give yourselves time to grieve, but then start thinking of strategies of how you are going to move forward. There are still good times for you all as a family.

    Thinking of you.
    Helen
     
  4. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
  5. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Dear Linda,
    Welcome to TP. You are in good company here, and hopefully, that will make it a tiny bit less scary for you (and your daughter).
    Gather as much information as you can, and accept the fact that you are in for a bumpy ride. You will cope because you have to.
    And don't leave it until you are desperate before you ask for help - it is available, but may well take some time to be arranged. A good support person may be your Community Psychiatric Nurse (CPN), who should be linked to your surgery. If you don't have a CPN, contact Social Services/Care for the Elderly Department. They will carry out an Assessment of your husband's needs, they should also arrange a Carer's Assessment for yourself, and they will then tell you what your husband is entitled to and what is available for you.
    Think carefully before you give up your job: I am 20 years younger than my husband, and although I do want to take care of him, I am glad that I have not given up working. I have got used to carers coming in to look after my husband while I am out, and I think that is the best solution for us at the moment.

    Best wishes and stay in touch!
     
  6. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Dear Linda I am in a similar situation to yourself. My partner was diagnosed as being mid stage alzheimers in April at first he seemed to calm down but we still have the ranting and raving I get so frustrated that I end up in tears I now tend not to argue back as reasoning just doesnt work . We are in the process of setting up a day care placement for one day a week and we have our first visit from a cpn tomorrow. I cant really offer much advise only to say you are not alone and this site has been my salvation when times are difficult.
     
  7. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Linda A - hi,

    It is a real bitch this illness. Takes away all the hopes for the future and dumps everybody in a mess... So sad and when I read posts like yours I feel very tearful. to have a teenage daughter and to have to work and to cope is really almost impossible...

    I think people with AD can be very selfish and aggressive - certainly not angels and as discussed in some other threads - the anger and aggression are sometimes part of the illness - not the person speaking - shouting... There are medications to make that go away - if it gets too unbearable then you should talk to the doctor..

    don't forget there is always an escape hatch... A lot of us are doing what we do for a variety of reasons including, guilt, love, remorse etc etc but in the end we only look after our AD sufferer because we want to... There is always an alternative - walk away and let the 'state' take over... Your daughter deserves her chance at university to have a happy young life and so do you. Your partner is not going to get better - just worse - will be pretty 'out of it' for a part of the time... You need to do what is best for you... It may be looking after partner or it may be getting out or ... This is not very PC but it sometimes help to know that there is a parachute in the locker!!! I understand they were used for making underwear in WW2 as well as jumping out of moving planes...

    love

    Michael
     
  8. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi Linda - Welcome


    Michael is right, it may not be PC but all options have to be considered. AD is an uspeakably cruel disease which does not mean that we should not speak the uspeakable. There is nothing anyone can say on TP that someone has not said, or thought, before, honesty is our salvation.

    So sorry that unlike others in this thread I cannot be of more help.

    Hugs

    Dick
     
  9. Libby

    Libby Registered User

    May 20, 2006
    625
    North East
    Hi Linda

    Some people can cope with caring 24/7 for a loved one with AD. I know I couldn't and I don't feel selfish for saying that. I suppose I could have given up work and cared for Mum full time, but we would have ended up skint and I wouldn't have had time for my sons aged 19 and 17.

    I always remember Mum and Dad saying to us all years ago, not to have them move in with us - to put them in a home if they weren't well enough to look after themselves.

    You have to not only consider your husband - you have to consider your daughter and yourself - investigate all options open to you and don't feel guilty about what you decide to do.

    Sorry I can't be more help.

    Libs
     
  10. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    Its so hard

    My daughter and i had such a bad start this morning,he just keeps on and on and there is no getting away from it, i just wanted to run away,she went to school saying she wanted to go under a bus and shes 17 studing a levels telling me whats the use,
    shes home and out now but a bet shes not had a good night,there is no light at the end of it is there? On the good side hes calm and watching T V waiting for me to make hot chocolate for him, i dont mean to sound mean but he is not the man i married, this one i would not have given a second glance to,this man hates shaving and doesnt care what he looks like these days,a far cry to a few years ago.hope to chat soon :)
     
  11. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    thank you

    My daughter and i had such a bad start this morning,he just keeps on and on and there is no getting away from it, i just wanted to run away,she went to school saying she wanted to go under a bus and shes 17 studing a levels telling me whats the use,
    shes home and out now but a bet shes not had a good night,there is no light at the end of it is there? On the good side hes calm and watching T V waiting for me to make hot chocolate for him, i dont mean to sound mean but he is not the man i married, this one i would not have given a second glance to,this man hates shaving and doesnt care what he looks like these days,a far cry to a few years ago.hope to chat soon :)
     
  12. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Linda,
    What support are you getting? Have you spoken to your GP about your health; do you think it would help you and your daughter to have someone to talk this through with. It is not something that you can deal with on your own.
    Have you and your daughter sat down and talked about the illness, the future - what you both want - at 17 I am sure that she has plenty of thoughts.
    Thinking of you Linda. Hope you have a better start tomorrow.
    Love Helen.
     
  13. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Dear Linda,
    Have you spoken to your daughter's school about your husband's illness? If she had any problems studying or dealing with other pupils, it would be easier for the teachers if they understood something of your difficulties. They might also be able to arrange mentoring or counselling for your daughter if she was finding it hard to cope. Teenagers do sometimes find school life stressful, even without the problems of dementia in the family.
    Kayla
     
  14. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Simple tasks

    Dear Linda,
    You are being bombarded with advice, and I don't wish to scare you off by adding more 'wise words' or sound patronising, but so much of what you write takes me back a few years - I do know what you are talking about......
    However, it might help to think of it from another point of view: my husband stopped making cups of tea etc because he could not break down the 'simple' task into small steps any longer; for a few months e managed providing we left it all prepared (mug with sugar, teabag+spoon next to kettle, milk in little jug ....), but even that proved too difficult eventually.
    The same applied to shaving: he started 'skipping' the odd day, he resented being prompted and refused any assistance, and as you rightly say, he was not 'a pretty sight', but it was obvious that he was not comfortable with it himself.

    Linda, be kind to yourself: try and find some help and accept the fact that you won't solve this ghastly mess in a hurry, because there is no perfect solution. I am making it all up as I go along, sometimes we have a few calmer days, then some new hurdle jumps out right in front of us, and every now and then I realise that something that really bugged me has 'gone away'.

    Chin up and hang on in there. Best wishes!!!
     
  15. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    thankyou

    I have just read your message thankyou. yes some days are better than others i find first thing in the morning and when he is tired not so good, im trying to sort things out from day to day today,
    i work from home at the moment and hope to be able to continue fo some time because of the age diff i have to continue.
    its a very lonley time somedays and i will miss our daughter when she goes to university next year so im feeling quit sorry for myself, then guilt oh guilt that is a thing, leaving the house going upstairs leaving him on his own ,
    when he was first diagnosed i said i have two choices leave or get on with it, and i hope i can do as much as i can and go on, i dont know whats going to happen and a part of me doesnt want to, all i know the person i married is not always the person im living with now,
    im glad i found this site, i can see it will help with alot of things and people who know and live with it day after day, thankyou again i hope one day i will be able to help someone else, i hope to keep in contact via this site as much as poss
    Linda a
     
  16. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    Just to say thankyou

    Im a bit slow working my round this site, but thankyou all, for you kind messages, im trying to sort things from day to day, and yes he HAD A SHAVE!!!!!!!!!!! i never thought he would leave things like that and yes no more coffee dont you miss someone making a coffee,the things i took for granted,i wont bore you all now as i will wont to bend you ears again and id hate for you all to say not her moaning again, and ive not had a bad weekend i hope you all had a good weekend, thankyou all again Linda a:) :)
     
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Hi Linda

    Two of my children was at collage another just going to university when my mother was told she had AZ my father had died that year also & I left my husband , so it was me left to cope with it all & the emotion & grief my children where going though it was scare, for them & yes for me not knowing which way to trun, hope fully your daughter has good friends she can confide in & you also .get all the out side help you can get CPN SW, my daughter pass at university my to other children had to stay on collage another year, but pass & are taking a year out before going to university.

    I left my job which I now regret, long story as my mum moved to Gibraltar & I went over to help her , then told she had AD so had to bring her back , there is light at the end of the tunnel I am living proof, its up to you if you want to give up work or go on income support, your daughter still gets all the financial support if she wants to go to university & can get a student loan .
     
  18. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    Dementia with Lewey bodies

    Thats what he has been dignosed with, i know very little about it but learning every day, and its not good up and down, and very tired all the time.he does try to do things he was allways busy thats what i miss,
    not the same person, but we have had a good weekend with some laughing,so im feeling so much better today i hope you have had a good weekend, Linda a
     

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