1. suem

    suem Registered User

    Jul 1, 2005
    61
    Worcestershire
    Can anyone tell me they have these same awful feelings.I am 50 and care for my 68 year old husband who has had Parkinson's for 12 years and Lewy body dementia for 3. Whilst I should consider myself fortuate that most of the time he can care for himself, I feel totally trapped and that my life has slipped away.I get no help(he will not entertain any assistance)We have no family apart from his 2 useless children that don't give a dam.I feel so angry all the time- with what I'm not sure. Everything I try to do for him is mostly thrown back in my face. I know he can't help this and I should be more tolerante. I feel a totaly selfish uncaring wife.
    I wish sometimes I had the courage to walk away- yes I can here people saying that is the cowards ways out- but I do love him and care what happens to him.If I left he would probably go into care although he is not at that stage but could'nt look after himself. Then I don't know how I would cope financially-all our money is tied up in the house and we live on his pension and benifits.I feel it's all such a mess. If I feel like this now-what will the future hold when things get really bad.
    All this anger and frustration does not do our relationship any good and is just harbouring hurt and frustration for both of us.
    Please tell me how I can get over this
     
  2. chrissieL

    chrissieL Registered User

    Jun 22, 2005
    54
    Shropshire
    #2 chrissieL, Jul 1, 2005
    Last edited: Jul 1, 2005
    I don't think you are selfish and uncaring it sounds just the opposite to me.
    I know exactly how you are feeling, I feel trapped a lot of the time too.
    I also care for my, much older (28yrs) husband who has vascular dementia and he is unaware that anything is wrong. He gets very distressed and traumatised with daycare, hospital and most of the outside world in general. He is only really happy at home with me. It's a huge responsibility this caring and very wearing for the carer.
    I have only recently joined this site and don't feel qualified to give you advice, but I'm sure someone will, in the meantime hang on in there , we're all here for you.
     
  3. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Dear suem
    I often feel despair, I have no idea what to do about it either but I feel much less alone when I visit TP. My whole life has been taken over with this horrible disease all that we had planed for the future has gone. It is best to take life one day at a time.
    You are not selfish at all.
    Anne
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Sue

    all of what you say is quite understandable, except for the bit about being selfish and uncaring. That you are clearly not!

    Most of us will recognise everything you say. Many of us will have wanted to walk away - or run away.

    The factor that differentiates people who think these things, yet still carry on is a simple one - love.

    How can you get over it? Well, to be truthful, in the short term you probably won't, but talking on TP may help, and time will eventually move things along.
     
  5. suem

    suem Registered User

    Jul 1, 2005
    61
    Worcestershire
    Chris,Anne,Bruce
    Thanks for your replies--it's good to know someone else feels the same
     
  6. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear suem, so sorry you are feeling so down. It is a feeling that most of us can identify with.
    However, we at least have a choice. We can walk away. Our loved ones have no choice, they cannot walk away from their illness. I tell myself that I am doing my caring role from choice, and that one day, if things get TOO bad, I will walk..............I doubt that I ever could, but its comforting to realise I do have a choice.
    Hope this makes sense to you. Love Connie
     
  7. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Dear Sue,
    Don't be so hard on yourself!
    There is much talk about work/life balance these days. Ha! There aren't many jobs that take over your whole life, 24/7, with tons of stress and aggro, no holidays, no staff Christmas party - and no pay ...... And you feel guilty about your feelings?! We all get to screaming point, and crying, and running away, but then we usually pick ourselves up again and follow Connie's line of thinking: we are needed, we are lucky in that (in theory) we have a choice, and for the sake of love we continue to care.
    I try (not always successfully!) not to allow myself to think of the 'what ifs', as that makes me sad and resentful. It is hard to know that the situation won't improve, but it is also sobering to realise that what we have today is still better than what may lie in store. (My situation is not that unlike yours: I am 54 and I care for my husband who was 75 two days ago and has been on Aricept for 5 years).
    Just one practical question: do you have a Community Psychiatric Nurse, or a Careworker? They may be able to suggest some sort of help, just so that you get a chance once in a while to have a break and do something for yourself.
    Thinking of you. Best wishes!
     
  8. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Suem
    You are not selfish and uncaring.
    Most carers that I know all have the feelings of being trapped and desperate,I do.
    On a bad day you feel like running away from it all,but the situation changes and you think it isn't so bad after all.
    This is the way it goes and if you can live day to day,telling yourself that it will be better tomorrow,it helps.
    You say you love him ,of course you do,I love my wife more than ever,but some days I hate her,but love will win every time,remember it's the disease that we really hate and not them
    Hope this helps,post when you need
    Best Wishes
    Norman
     
  9. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Suem,

    It's amazing that you have been caring for as long as you have without conking out completely.

    You said that your husband "will not entertain any assistance". You might need to see how you can work to change this situation, even if it means telling some half-truths. My mother-in-law said that my father-in-law would not accept the prospect of a care assistant coming into their home one afternoon a week - effectively to give her a "break" and do things like the supermarket shop (things are pretty bad when a trip to Tesco counts as a break).

    My father-in-law actually took quite well to his weekly "visitor" and sits and chats quite happily for an hour.

    Also, getting a social worker involved was a key step for us. Having never had any contact with Social Services before, I felt a bit strange ringing up for the first time (my mother-in-law had agreed to this, but didn't feel comfortable making the call herself). Our experiences over the past six months with SS have been good and the social workers have been very knowledgable and helpful.

    I think one aspect that has made this whole AD thing so hard for my mother-in-law is the fact that, prior to his illness, my father-in-law made all the decisions in the family. It has taken some time for her to feel confident that she can make decsions for the both of them that reflect their current needs.

    Take care and keep posting,

    Sandy
     
  10. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    You and me both, Sue

    I see we have both joined at the same time, too. I'm cross a lot of the time, mainly with my 16 years older than me husband, who has vascular dementia. He flatly refuses to acknowledge that anything is wrong beyond old age - he is 72. He is still compus mentis enough now to be able to discuss the fact that we are facing the biggest problem in our marriage, but just won't. I have looked at websites such as this, and seen so many saintly carers being so bloody nice about the people they care for, when there are times when I think murderous thoughts, and other times I am just a horrible nag.

    The awful thing is I now find it hard to remember the person I married - he was always pretty irresponsible, but was a great traveller and fun to be with. Now, he can't get as far as Norfolk without literally not knowing where he is when he wakes up in the morning, and constantly in need of a loo which is due to nervousness.

    I'm taking very positive steps to create my own, new, circle of friends as an individual, as I fear our social circle is diminishing as a couple. He is perfectly happy to sit at home doing nothing, but I'm not.

    It's a stinker, isn't it?
     
  11. suem

    suem Registered User

    Jul 1, 2005
    61
    Worcestershire
    Oh! I so relate

    Rosalind I can so relate to you. The husband I had is no longer here,just the body with someone else's character. We do little as a couple mainly as he has no interest or physically not able to manage it. We have no friends as they can't cope with this. They cannot understand that it sometimes takes 2 hours to get ready in the morning ,his walking is very limited or half an hour after we have arrived somewhere he want's to go home. Quite frankly if our so called friends cannot support we are better off without them.

    Every thing falls on my shoulders to do, without any input from him, even though I discuss things with him and we make a "decision" I then get he did'nt know anything about it or it was not what he thought---then get really p.....d off.

    I too have murderous thoughts, say the most hurtful things and sometimes think that if at least I was a widow I could move on.What a bitch I can be.

    Then I reflect that he did'nt ask for this illness and he is the one that it effects but it is also my life that has been snatched away and binned,all our dreams shattered.

    We do have a CPN who visits and has suggested things but he is not intrested in going to day centres etc.He is not that type of person to join in singing songs etc,it suits some folks but not him - he went once and hated it so we have not pressed it again.

    Generally speaking he is ok on his own for a few hours if the Parkinson's is under control but there are odd times when mentally he is not but his understanding is enough to refuse any help. On the odd occasion his son visits (and I say odd-even though he lives 5 miles away!) and I do something for me -he says he feels that he is being baby sat.

    He say's I've changed-yes I have. To an angry nag that treats him like a child but I can't stop myself.
    I'm sure we all know what it is like to say the same thing 20 times over for them to do the opposite!

    But at least this way I can take out my pent up emotions on my laptop and know someone out there is in the same boat
    Sue
     
  12. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    Sue, it's a shame you are so far away - otherwise I can see us consuming several bottles of wine together!

    Our CPN often asks if I have friends I can moan at, but I would hardly stay flavour of the month if all I did was complain about my lot. Have not even actually said in as many words exactly what the situation is to most people, although I do now put one of those awful circulars into Xmas cards exhorting people not to ring and leave any sort of message with Himself, as they just don't get written down.

    I have suggested to husband that it would actually be quite smart of him to say to people he knows well words to the effect that he may be repeating himself, as he has a serious memory problem. That way he would appear brave and admirable rather than a tedious bore telling the same, rather irrelevant story yet again. This notion has not been taken on board.

    We do not have children, either, although I have 4 grown up stepchildren who frankly their father did not make enough effort with. I must be one of a rare breed of stepmother who actually used to have rows about NOT seeing enough of his children. They cannot be expected to help, when he did not bother to keep in touch with them when they were young.

    In a way we are already widowed, in that the men we married have gone. It is just a hell of a drag that he has been replaced by a factious child, and than instead of developing they are going in the other direction.

    I am particularly sorry for myself this week because incredibly clumsily I managed to give myself two lovely black eyes last weekend - fell over, goodness knows how. I thought they were looking rather less frightful, and ventured out yesterday, but a neighbour saw me and gave a shriek, so can't be that good. Am taking and rubbing on industrial doses of arnica, and considering a yashmak.

    Courage, mon brave, and it is enormously comforting to know others have the same uncharitable thoughts that I do!
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    And a big welcome, Rosalind and Sue!

    You are clearly well qualified to have become members of the club!

    Do use TP to vent all your frustrations as that helps others to realise they are not alone in what they feel. You may also find that in replying to posts by other members who are in extremis, that actually helps you too.

    We're all in the same leaky boat here... :(

    ....but unlike a leaky boat, where adding more people could lead it to sink, the SS Talking Point actually gets stronger with each new crew member. I purposely didn't say 'passenger' because as carers, we are none of us passengers! Stokers, more like!
     
  14. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Rosalind and Sue,

    I don't know if this will help but your posts got me thinking:

    My Mum and Dad never used to argue, just an occasional cross word. Then, a couple of years ago, when Dad was being mean to my Mum, I remember her confessing to me that she thought that Dad had stopped loving her. This must be the hardest part to deal with emotionally - the loss of such a fundamental part of a relationship - even in the knowledge that it's really an illness that is the cause. Why wouldn't you be having 'awful' feelings?!

    To start with, Mum would get annoyed, angry and frustrated, as you describe - and I have to admit that I felt embarrassment when Dad showed off or was unpredictable in front of other people.

    When we first attended the Memory Clinic, there was a couple in the waiting room with us and the man, with AD, was saying & doing strange things etc., just like my Dad. His wife just seemed bemused by his actions and went along with some of the wacky things he was saying. As a couple, even where one had AD, they seemed happy, whereas all my Mum and Dad were doing was getting annoyed with each other. This is when I think I first started to realise that I didn't have to be embarrassed about how my Dad was behaving - if other people didn't understand - so what?

    Mum still, quite naturally, has moments of 'what now?' :rolleyes: with something Dad does, but she has also gradually become more tolerant and to understand the many, many parts of Dad's personality that are affected by his AD. BUT it really is a very gradual process. I think it's great that you have both joined TP at the same time!

    Keep Posting,

    P.S. Bruce - Aye aye Capt'n :)
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hey Hazel,

    you talk a load of sense.

    A Brucie Story followeth:

    Although I have parted ways with the church, in the days when I used to read lessons, and during an interregnum, we had a lay reader called Ken Hollis. Unlike the various vicars we had, who seemed to read from some book or other of rather academic tracts, Ken would tell stories that had happened to him, experiences, etc. He would then relate them to Christianity and the messages normally given. They all meant something.

    ...like the story you told above. It's life and what you say has major resonance.

    That's why TP is so great. We've not been to med. school or someplace else where we have been told about these things. We've been there, in the midst of it all. What we say is the business. That's why we listen to each other.
     
  16. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Rosalind & Sue
    welcome to TP.
    I like your style and honesty,so many of your admisions ring true.I have had so many of those thoughts,I am sure others have too.
    In the early days of my wifes AD,a psychiatrist friend told my wife"tell people I have a memory problem",she does and I think it helps.
    I am sure also that over time we become more tolerant as Hazel says.I know I have.
    Bruce we can't have leaky boat called SS Talking Point,we can have a leaky ship where us as crew members bale one another out.
    Bye shipmates
    Norman
     
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Shucks, Norman, don't go getting all technical on me.......

    I bent the rules because a leaky boat seemed more visual than a leaky ship, and the vision of an overcrowded lifeboat is very...well, visual!

    However, I wanted a name for this floating edifice, and so the choice fell primarily between SS and HMS, though I could have included RMS and some others.

    I trust an old salt will forgive a 'lubber just this once......? :D
     
  18. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Sue and Rosalind - I hope you didn't think that I was trying to negate your very valid feelings. I was really just reflecting on how very difficult it was at the start for my Mum, just as you describe.

    Thanks Bruce. As you say; "it's life" & 'I only give my own observations from experience with my Dad's dementia' :)

    I like the analogy of the ship/boat (as a daughter of a sailor I guess I should know the difference). Let's splice the main brace!
     
  19. suem

    suem Registered User

    Jul 1, 2005
    61
    Worcestershire
    Hazel,
    I welcome your comments and obersvations and are pleased your parents have somewhat adjusted to this terrible situation.

    One thing I find pretty hard to deal with is my husband's hallucinations--although he has suffered for several years they have not really effected me.But of late he will not sit down because "someone" is there or will shut the doors so "they" don't get in. I find this a bit difficult as he knows he is imagining it.

    Thanks for helpful advise
    Sue
     
  20. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Bruce
    take no notice of me ,I'm just a silly old salt!!
    Norman
     

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