1. linda a

    linda a Registered User

    Jun 13, 2006
    Some days are ok and some are worse,i have had some counciling with my 17 year old daughter to help us come to terms with my husbands dementia with lewey bodies,i keep getting told i have to have a life its not my fault he has this awfull illness and things will get very much harder,i look every day to read some of your messages and to try and understand more but i can not take it in how can i go out and enjoy myself,
    i worry i worry a lot does any one know about lewey body dementia? will my husband realy get so bad that i can not cope will he have to go in a home?, he is 17 years older than me but hes been my best friend i dont want to loose him,
    SOME DAYS ARE OK< and i think they have got it all wrong its stress,
    i know SOME DAYS HES NOT OK< thats when it all goes up in the air,lots of shouting, and crying,im sorry
  2. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    Linda, the 'going out and enjoying yourself' is all relative. I don't think anyone expects you to get dolled up and go and pull a toyboy, but living with someone whose brain is going is hugely stressful, and a bit of mix and mingle with other people who know you in your own right, not as X's wife, is beneficial.

    It takes courage, particularly if you have been used to being part of a couple. I joined a local Writers' Group, which my husband (similar to yours, 16 years older) would never have wanted to do even when well. Of course going along the first time was scary. With considerable trepidation I turned up at the local community centre, found a group of people who seemed absolutely delighted to draw me in, only to find they were the local Badger Group. Eventually found writers in another room, who were equally welcoming and more my cup of tea (not that I have anything against badgers).

    It's only once a month, but it is somewhere that I am me. Four years on, and I have only just told them that my husband has dementia (actually used it as excuse not to become chair). Husband has come along to a couple of annual parties, and now that they know they will undoubtedly put up with his rather inconsequential conversation.

    Your domestic life is not going to get better (sorry, that sounds horrible, but it is true) so do what you can to build up some external support for yourself, and you will cope better with the trials and tribulations. I am now also doing some stuff to do with a local food festival which has exposed me to another group of people, again people who are interested in what appeals to me.

    Go for it - a few hours a month could make a lot of difference.

  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Oh Linda, I'm so sorry you're having a rough day. I'm afraid I know nothing about your husband's type of dementia, and even if I did it probably wouldn't be much help. You do what you have to do, and keep it together as best you can, and that's about it, really. Perhaps someone will be on soon who can give you more insight - I just wanted to give you a cyber hug, because the whole situation is rotten.

  4. Áine

    Áine Registered User

    hi Linda

    there's stacks of information about Lewy Body at:


    it's an excellent site for finding out about it.

    there's also a Yahoo group specifically for Lewy Body, though it's mainly people in the US that use it. It's a kind and suportive group though.

    I know a bit what you mean about struggling to have a life. It's different for me because its my dad who's ill rather than a partner ...... but I find it difficult to go away and leave him. You'll be more relaxed and rested and more able to continue to care for your husband if you allow yourself to have a break sometimes and to have something else in your life that interests you.

    best wishes

  5. DickG

    DickG Registered User

    Feb 26, 2006
    Hi Linda

    Rosalind give some excellent advice.

    Unfortunately you have no control over your husbands dementia, what you do have control over is your attitude and approach to your situation. It is essential for yourself, your daughter and especially your husband that you remain fit and healthy both physically and mentally and that at times means being selfish. Do not make the mistake that I and many others have made in believing that you are invincible - seek help and make time for yourself.

    Is your daughter aware of TP? It may be painful for her to read some of the postings but she is of an age where she would benefit from knowing the reality of the families situation. Take care.


  6. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Linda
    it has taken me over 11 years to realise that my old life is not there any more and it will never come back.
    I still love my wife dearly but realise that I have to stay fit to be there for her, as a consequence I have just had my first respite break,it was the longest period of separation in the whole of our long marriage.
    It was also at the suggestion of Peg's consultant.
    I am now again attending various meetings etc ,mainly with NHS links.
    I am hoping to try and finish the book which I gave up half way through!!!
    I now have a separate little life,which is not what I wanted,I still ache for my life as it was with Peg,but I have to take time out, to recharge the batteries to enable me to give the best that I can to make Peg as happy as I can.
  7. linda a

    linda a Registered User

    Jun 13, 2006
    Thankyou all

    The guilt of going out to get away from my husband,i dont mean any thing very exiting just to shop and coffee with my daughter and children and we have booked to go out for dinner Friday night my 2 daughters and i,
    so looking farwad to it,the sadness of wanting to leave the house, my husband is at the stage im told where he still is holding on as much as he can and it will get better when he no longer has that ability that i just hate, and to be told its not my fault hes ill,and i have to carry on makes it sound so unkind and crule im going to say sorry to you all as i know i sound so mixed up i am,
    but i do look hear most days to read your postings and messages so much sadness yet you seem to keep it together what a great lot you all are bye for now all the very best for the week
  8. Maggie

    Maggie Registered User

    Oct 11, 2003
    Gibraltar/England london Now
    #8 Maggie, Jul 9, 2006
    Last edited: Jul 9, 2006
    I believe what happen to me when I was first told mum had AD was that I went in to a shock period , I was like you on the good days my mum had back then I thought she was getting better .

    Your husband may stay at his stage that his at now for a long while , all the advice I can give you is that try to not think how bad its going to get in the future as the other day at a dementia cause I went to that include what your husband has they said that they really can not give you a time limit to when the hard time is going to happen or when the ending is also thats why they do not have
    Hospices (sp) for people with any type of dementia , like they do with people with Cancer
    so learn how to cope with the now with your husband from the link Anie left

    Your pick up from reading from those site how hard its going to get ,maybe that’s your journey for now in wanting to no , the guilt is sometime a mind killer, but you learn in time to live with it . have a nice time on Friday.

    PS This is all
    Advice am not telling you what to do
  9. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Linda,
    I remember when mum was regularly sundowning and being pretty horrible to dad, the CPN saying that she thought mum would be a lot easier when the illness progressed!! What a mixed blessing. All I can say is the pain changes. We are planning a family celebration in a few weeks time, and dad has said that he doesn't know if we will bring mum home, because others who are not so close, find it difficult. My immediate thought was, well lets not invite people who find it difficult to see mum (she is in advanced stages), but then dad needs to have friends. He needs to develop an independence, and if he can celebrate without mum being there, then that is good. We can have a separate celebration with mum. Your life has to develop compartments, things that you can do with your husband still, and things you do with other people. That is right, that is healthy, that is what you have to do for the sake of your whole family. So enjoy those coffees, and have a lovely meal on Friday, and come back and tell us about it.
    Love Helen
  10. roann

    roann Registered User

    Jan 19, 2006

    I feel gulty a lot of the time if I get out for 2 hours and he stays in with a sitter. I still feel he sould be with me. I have a problem you may be able to help with. He as lewy body dementia and find that the stiffness and regidity makes it hard now to get him to feed himself at all. the parkinson type shakes make drinks go all over even with so called nospill cups.I do massarge his hands ,arms and legs any thing you can think of that might help.
  11. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Roann,
    You have to take time out for yourself, without it you will not be such a good carer. So the time to feel guilty is when you don't make time for yourself!!
    Have you tried a straw for drinking, leaving the cup on a table? Sorry that is where my ideas end, hopefully others will be able to add more.
  12. roann

    roann Registered User

    Jan 19, 2006
    hI Amy Yes I have tried even the one way straws but because swallowing problems I have to put thickener in all his drinks. He gets a lot of asperation problems on his chest, so drinking is getting harder for him. Thanks for being there for us.
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I`m Feeling Guilty

    Hi Linda

    When my husband was diagnosed with AD, I was offered so much advice, from well meaning friends and family, I felt I was drowning in it.

    I too, did not want to leave my husband, and have a break from him. We have been together 47 years. He is 10 years older than me. It is enough for him, at this stage, to have to come to terms with his Alzheimers, without having the additional strain of being left with someone else while I have some respite.

    There will come a time when he won`t know whether I`m with him or not, and then I`ll be able to take all the breaks I need. Until then I want to be with him as long as I`m able to cope. That`s what marriage is about. People who give advice, without being asked for it and without having experience of being in a similar situation, just don`t realize that having to justify our actions, adds to our stress.

    The most constructive help I`ve had has come from Talking Point. Listen to your own heart and head Linda and do what feels right for both you and your husband.

    Grannie G
  14. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya GG,
    Yes, my dad felt the same. So much so that he ignored a bleeding ulcer until he had to be hospitalised and have an emergency blood transfusion, because he was worried about mum. So though I understand what you are saying GG, I think on occasions other family members can see a bigger picture.
    - I think you may well find that it still tears you apart to leave him in the care of others.
    I'm rapidly coming to the conclusion with this disease that no one stage is better or worse for the carer, the pain just changes.
    Love, Helen
  15. linda a

    linda a Registered User

    Jun 13, 2006
    Its a roller coaster

    Some days i think hes back with me, and then i dont know who im living with, at what stage hes at i dont know the mental health nurse comes tomorrow,
    one thing i do no for sure i dont know who i am any more,
    doctor wants to put me on mild anti depresents, i said NO i will not take tablets for someone else i cannot be ill, ive got alot to sort and do, our daughter needs me shes on this roller coster with me,
    HOW DO YOU COPE WITH THIS,im glad i can right like this no one will see just the people who proberly know how i feel
  16. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Linda love, you cope by taking one day at a time.
    On another thread there has been discussion about natural anti depressants, maybe they might help.
    Is the mental health nurse the same as the Community Psychiatric nurse? If so, make it clear that you need support as well; you need to be able to talk over your concerns and how you are feeling, not just your husband's illness. Keep talking on here; just sharing your anxieties, talking over problems, makes them more manageable; knowing that you are not alone.
    Let us know how you get on tomorrow.
    Linda you are still you; a bit lost at the moment, no doubt very scared, not knowing what is happening from one day to the next - but you are still in there, and you will be OK.
    Take care.
    Love Helen
  17. linda a

    linda a Registered User

    Jun 13, 2006

    Thankyou,yes the mental health nurse came today she was hear a month ago and could see a decline in him,and she is going to see about exersises sorry can not spell the word i need!!!!!!!!!!and pehaps a up of medication,?
    as he also has an ongoing water works problem its all down hill but belive it or not i dont feel so down tonight, i think ive been so low,all i can dois get up,its not a nice place to be,but thankyou water works nurse Tuesday,i have finished work now for a few weeks so i hope to get some things done, and i have started to take st johns wort it might help, thanks again this is like talking to friends with out the embarrassment,bye for now,Linda
  18. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Linda,
    The good thing about feeling really low and really desperate, is that when you get through it, it makes you realise just how strong you can be - how much pain and hurt you can deal with, without it destroying you. Pleased you are feeling better today - enjoy your break from work, yes get somethings done, but also have some time for yourself.
    Love Helen

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