1. connie

    connie Registered User

    Mar 7, 2004
    I am sitting here in floods of tears. I want to reply to everyone, you all seem to have such a hard time of things and my heart goes out to you all.

    However I think I may be getting depressed. Is it normal to only think of oneself. As much as I would do anything for my dear Lionel, I am more and more questioning my own role in the overall scheme of things.

    I have had the grandchildren to stay this week, the boys 15, 11 and 9 at the start of the week, changing over on Thursday when the grandaughters 6 & 3 came. I try to juggle keeping them happy with keeping things in routine for Lionel. He loves them all, especially the 3 year old, but at times is totally irrational about them staying.

    I am not prepared to give up seeing the 'kids', especially now that his daughter (after 4 years) and alot of harsh words is on the scene again. She wants to seeher dad, but has had to cancel twice, so we are still awaiting that visit. Lionel, bless him, does not recall the difficult times of the past, so he is quite happy with the situation.

    As when his son got in touch, this time last year, it resulted in Lionel attempting suicide, he was so depressed at the situation, I am not happy but cannot stop them meeting.

    Everyone seems to think that Itis her right, and Lionels right, and 'uncle tom cobbleys right' but what about me. Where are my rights.

    Just now I want to run away, hide, find myself, anything but be a CARER.

    Sorry I seem to have rambled on , perhaps I should delete this...... We have been at the hospital today for Lionels MRI scan..had to get a friend to have the little girls for 2 hours...Everything I do revolves around AD.

    Don't feel like smiling, but I do send my love and respect to all of you. Connie
  2. bjthink

    bjthink Guest

    Connie, you're essential to this board, and to me.
    Please post. Please cry. Please be the wonderful human being you are.
    You are loved.
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Connie, trying to be all things to all people is never easy. You are such a caring and compassionate person, you see and try to understand everything from all sides. Now you need to give a little of that compassion to yourself my love. You are doing a 24/7 job of being a brilliant carer. Then, you are trying to bridge and mend the rifts between your husband and other family members. On top of that you are being a wonderful Nan to what was it, yes, FIVE grandchildren! Hey girl c'mon, what would you be saying to any of us now? I'll tell you, you'd say, "don't forget you have a right to a little bit of time for you now will you?", that's what you'd say to us isn't it? So, that's what I'm saying to you now. Allow yourself just a bit of space, to cry, to heal, to relax. If a friend can take the litl'uns off your hands for a bit while you help Lionel, then ask her if she could please help out just so you could sit in the bath with a drink and loads of bubbles and candles or what ever will give you that little bit of time and peace for you. Please Connie, do it, you sound really tired, it must be lovely having the grandchildren, but it must also be a terrific drain on you to care for their needs as well as Lionels. OK it's only a short while, if you can't get a break yet, for goodness sake do take time out when they go back home. I can remember sometimes feeling like I was on some sort of automatic pilot trying to juggle things, like I was looking at it all as an observer but only seeing it from my perspective, it scared me. You are always there for others on this board when they need a friend, please don't be cross with me for trying to be a friend to you now. Day by day Connie, love and hugs, She. XX
  4. Kriss

    Kriss Registered User

    May 20, 2004
    Dear Connie

    I found myself asking the same question just before Christmas. Every time I read or replied to a posting I ended up in tears. I was getting more and more down. I kept thinking maybe I needed to move on, that it wasn't helping to share everyone elses misery as well as my own. However maybe it was more to do with it being the anniversary of Dad's death? I don't know, but I do know that I'm back up and running again at the moment and once again feeling the positive vibes from being able to share something that only carers can share.

    Take a little time out if you feel that's right for you but please don't leave us. Remember you have a lot to give to others as well as maybe finding a friends shoulder to lean on.

    Be kind to yourself
  5. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    hi connie

    i have also been in floods of tears tonight ,maybe for differant reasons ,or maybe because we are both at the end of our tether,i wanted to say you are asking a lot of yourself with the care of the grandchildren on top of the care you are giving to lional,my much loved granchildren have had to take a back seat this last few years, this week i had to miss my eldest grandaughters 18 birthday party ,because my jim is not fit to take anywhere now ,my 12 year old grandaughter used to spend lots of time with me just talking or doing crossword puzzles or helping to cook dinner ,now whenever she visits ,every 2 weeks ,all my time is spent ,trying to pacify jim ,because he has taken agai nst my son ,who has been wonderfull to us .she is a lovely child who makes a great fuss of grandad .then there is the new grandson of the same son ,things are so bad when they visit ,he is just 12 month old and i have hardly had a chance to hold him ,with the result ,if i do try he will cry and pull away ,this breaks my heart , but at the end of the day ,i have to be there for jim he has first priority.take it easier on yourself and god help us all .ANGELA
  6. connie

    connie Registered User

    Mar 7, 2004
    Oh bless you Angela. I really feel for you being unable to give the time the grandchildren deserve. I can understand that you feel you have to give most of your time to Jim.

    Because I have only been with Lionel some 8-9 years, and it was the two oldest grandchildren who helped me pull through when my husband died suddenly, I feel even more torn when it comes to caring for Lionel.

    I am just selfish in wanting the illness to progress in such a way as to be able to manage my life, the children and my sweet, wonderful, impossible, awkard absolutely lovable Lionel. Take no notice of me when I moan.

    Love Connie
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Connie

    You are not selfish - just very very human. You can't be a carer without that quality.

    You originally asked if it is normal only to think of oneself. Well, yes it is and that is the truly easy route that many people take. To think of oneself is to engage the survival instinct, a most basic thing. To open the door and run, that is also the survival instinct [and one that many of us have wished we had the courage to do, at one time or another]. But if you look at yourself in the mirror you will see a person who is decidedly not only thinking only of herself; all your statements show that you are tempering your thoughts with Lionel's care, as well as your grandchildren.

    It is not much to ask is it? - a life for yourself? That doesn't mean you have to abandon all other things, though the organisation is always tricky and painful.

    Take it slowly.

    I liked Angela's "god help us all"
  8. bjthink

    bjthink Guest

    Brucie, I have to disagree. Strongly. Thinking of oneself is NEVER an easy route for a woman to take. In fact it it the hardest route any woman could possibly travel along.
    Women are socialised to put others first. This is a lesson we learn from our upbringing - we actually don't count. Our lesson in life is that we have to make things good for those who depend on us - our children, our partners, our parents.
    Women do stuff against all odds because it is in our social and genetic make-up. We have some kind of biological imperative which makes us hold on in there, whatever happens.
    That there are guys like you who also hold on in there is a kind of bonus.
    You do wonderfully, magically, what you can, and leave space for the 'self' to exist.
    For most women, there is no space for the self, and never will be.
    We have been conditioned to have no 'self'. We live for our children, our partners, our parents.
    Even the best of us is conditioned by this biological process. I wish it were different.
    Women give all to those they love, and even those they hate but feel responsible for.
    I shall never give up the fight for my mother whom I hate with a passion. She is family. She deserves what I can give.
    Tell me, Brucie, how to think of myself?
    I should love to learn that simple lesson, from you, a bloke with a heart.
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    #9 Brucie, Feb 27, 2005
    Last edited: Feb 27, 2005
    Hi BJ

    well I really don't like to generalise. I visualise the male /female thing as a continuum.

    Some men are very caring, some are not.

    Likewise, some women are, some are not.

    Some men are hairy beasts, some are ballet dancers.

    Some women are hairy beasts, some are ballet dancers.

    Some hairy beasts are most sensitive, some ballet dancers are not.

    Maybe testosterone and other hormones have an effect, maybe it is genetic, etc.

    I don't take your line about how women behave/think universally, so I guess I'm disagreeing with you here, and as with all things, no-one is ever 100% correct about anything; neither is everyone expert on everything, or even individuals expert on anything. We just have to take things as we experience them, and present our opinions in that light.

    Jan has two sisters, there are three nieces, there is a grand niece. Jan was the most caring of people, the other six haven't given a practical jot about her since she has been ill.

    I rest my case.

    To re-phrase Norman, person by person.

    P.S. I don't think anyone can really tell any of us what to think of ourselves... We just need to be able to live with ourselves, day by day. Some people can do nothing to help a relative/partner, and not blink about it. Some people can almost crucify themselves in caring, yet still feel they will never be able to do enough.

    As in all of this, there is no easy answer.
  10. bjthink

    bjthink Guest

    I agree. But what I'm saying is that women are very strongly conditioned to care to the detriment of all else. I know that this is the old gender division thingy, but there it is, it can be very strong, and I believe it works very powerfully in women of my particular generation (60+). We had to fight on every front for equality. When I went to Uni, 1.5% of women managed to get a University education. Only 12% of girls in my area were allowed to pass the 11+, and most in the top class at my Girls' Grammar School were side-lined into teaching or nursing or the lower ranks of the Civil Service. At every stage along the way we were told that our future consisted of being a wife and mother, and that a career wasn't important ie 'self' wasn't important. Women didn't even have equal pay (they still earn only 87% of male hourly pay). These assumptions of society rubbed off on all of us, even the stroppy rebels like me. My father, who hadn't particularly shown any overblown sexist tendencies until then, refused to allow me to go into journalism when I graduated - I had to go into teaching as it was a 'safe' job for a woman.
    I've seen a huge shift in my lifetime in gender roles and it's all for the better. But even given those changes, when in a loving partnership women still do 70% of household jobs, and 80% of childcare (and before you say it, yes, I do know some wonderful male lone parents, although 90% of lone parents are women).
    Naturally I understand that there are many many women whose personality or whatever overwhelms their natural or socialised instinct of selfless caring because I've lived with my demon mother, haven't I? :(
    There are thousands of women like me who have spent the 'best' years of our lives bringing up our families, in my case as a divorced lone parent, and they were and are great years. My wonderful much-loved and loving son is the best work of art and life I ever created. And now we find ourselves caring for a parent, with no time to catch breath and discover self in between.
    Looking at the battles of carers in this forum, what upsets me most is reading the stories of women who are desperately trying to balance the needs of their children against the needs of a parent or partner with dementia. What room have these women for themselves?
    It's not a gender issue, at bottom. It's a lifestyle imperative which still, in general, weighs too heavily on the female of the species.
  11. susie

    susie Registered User

    Nov 30, 2003
    Hello Connie
    I realise that Brucie is trying to help as best he can but I do agree wuth bjthink that we women (I'm 59) are programmed to care for everyone first and we are always put ourselves last on the list. I went from home to college, met my husband there,married and went on working and caring for the family as they arrived. My mother who was widowed 10 years ago lives a few hundred miles away looks on me as a free therapist. She picks up the phone any time she's bored, depressed and things are going wrong and she expects me to be able to listen to her gossip,moans etc even if I've just come in from work. Although I've told her many times that I'm feeling tired and stressed with looking after my husband, she seems oblivious to that but as her daughter I feel I must do my best to help/listen.
    I have wonderful support help in my area but I was finding the extra stress of my job-albeit part- time was taking its toll. I have struggled on since before Christmas with this work ethic that you MUST keep going on no matter what although my family were telling me to give up. I have finally gone to the doctors and been signed off work and even though it's only been a few days, I know I will never go back. I've had a good few days with my husband due mainly to the fact that I'm more tolerant as I haven't got to rush to do everthing before I'm back to work. He is in respite this weekend which has given me time to think about the future. What I am really proud of is the fact I have FINALLY put myself first and I wish I had done it a long time ago. Ruthie's post made me think a few weeks ago and life is too short to waste time.
    My mothers reaction to my being signed off work was an abrupt well what's wrong with you then! She can't cope with the fact that I'm not there for her and she had to return the sympathy.
    We carers especially women must not keep going until we are on our knees through misguided social programming but get help or change the situation before it's too late.
    Sorry to ramble on but I agree that we older women have to change our way of thinking and value ourselves more.
    The respite must be working as after the usual guilt feelings of David going in, I'm looking forward to picking him up tomorrow.
    Sorry Brucie but I know you are trying to help-you touched a raw nerve!
    Regards to all
  12. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    #12 Norman, Feb 27, 2005
    Last edited: Feb 27, 2005
    I am sorry but I cannot agree with what you say regarding women are programmed to care for every one first.
    As Bruce says every one is different,for every caring women that you can bring me I can bring you a caring man.
    The modern man,most of them ,are different,they share chores and duties which used to be only the women's tasks,they put their wives and children before themselves.
    I never really liked my mother much,I was away from her as much as with her during my young life,but that;s another story.
    Even so I visited 2 or 3 times weekly and even when she was in a home.
    This continued until she died at 89 years of age.Was this caring or duty or does it matter?
    I have put my wife first for 58 years and over the last 7 years of AD even more so.
    I will continue to do so as long as it takes.I don't know if I am putting myself first now that I have 2 half days free to myself.
    Sorry Connie I too must disagree with you
    All the best
    Norman :confused:
  13. bjthink

    bjthink Guest

    #13 bjthink, Feb 27, 2005
    Last edited by a moderator: Feb 27, 2005
    Norman - you, and Bruce, and Barraf and some others, have to get together with a pint or a short, and look at some of the posts from women, in a kind of matey, friendly, compassionate way.
    Look at us. Listen to what we're saying. All of us can just about cope with dementia in someone we love, and even in someone we don't love.
    What we can't cope with is dodging and weaving, doing right by everyone, keeping our kids happy while we do our best by our parents, dividing our love, and still failing to find a space for ourselves. I gave up love, remained totally celibate for 10 years, so that my son didn't have to deal with any feelings I might have for anyone but him.
    Look at the posts on here by Magic, She, connie, Lynz, Jude, storm, angela, susie, ems , and other women. Think of what we are, what we deny ourselves, in order to be caring.
    It's not right that there is no 'self' available to us. That we spend our entire life giving. Or that we think it's acceptable to do this.
    Can we please just accept the statistics? Women, as Simon Baron Cohen says, are hard-wired for empathy, however much it hurts. It's a hard-knock life being a woman/mother because it uses up so many megabytes. If anything gives, it's statistically likely to be female.
    And that doesn't detract in any way from the loving care given by so many men. And from one of the women who loves men - thank you, and please try harder to multi-task. :) And do try broadband. :)
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    #14 Brucie, Feb 28, 2005
    Last edited: Feb 28, 2005
    Hi BJ et al

    I've already written - and deleted before sending - some replies on this topic. .

    Call me pedantic, but - whatever the truths of any issues aired on TP - I believe that we ALL need to couch replies in terms of "in my experience" or "to my understanding", because that is all that we are ALL speaking from.

    Not everyone has the same experience, due to age, gender, social backgraound, regional placement, genetics, state of mind, etc.

    We all come to TP because we seek advice from others based on their experience, or wish to impart experience we have ourselves gained.

    We may agree with others who post, or we may find that their understanding does not compute when we place it alongside our situations.

    When we make statements that are not couched in these terms, we set ourselves up as self-nominated experts, and we are not, except in terms of our own experience. That can then be taken in a wider context that we are also experts in other areas we talk about. For example, dementia. We are not experts there, either, except in terms of our own experience.

    I leave AS to put forward the expert advice on dementia care [and even then that is for the majority of cases; no organisation can hope to be 100% correct on 100% of the population, after all dementia care is not a static issue] - we on TP speak from personal experience, even if that experience reaches more widely than our own partner, or parent, or child.

    Let's just add those few words - "in my experience" - and that sets the context for us all.

    P.S. loads of statistics don't swing it with me - I worked in the area for many years, and I can wave numbers with the best of them. All depends on sample size and population, analysis techniques, quality and quantity of data and what story someone wants to tell. Please don't take it that I refute any numbers quoted in good faith on TP, but I think that contacts on this site are at their best couched in terms of what TP has always been so good at - practical experiences. Let's leave analysis of much larger populations to others? ;)
  15. bjthink

    bjthink Guest

    In my experience, I'm a stroppy, big-headed, opinionated cow, with a view on everything, and show absolutely no self-restraint in expressing it, especially when, as this weekend, I find myself under the most intolerable personal stress with no visible means of support.
    In my experience, I should be very much ashamed of my gobbiness - and I am :(

    PS The statistics come from the Government's last census on UK lifestyle :)
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi BJ

    I'm sure you are not! :)

    Even if you were [and maybe we all are, here at TP] then maybe that's the only thing that gets any results when trying to get help in caring....

    I'm not disagreeing with anything anyone says about anything on TP, just suggesting we all [me too, and first of all really] qualify what we say on TP by making it clear we are not necessarily speaking the one possible answer.

    I think it important that all we members are peers; everyone has something to say, or to ask, and nobody has the sole franchise for any truth other than that taken from their own experience. I'm concerned actually that new members or browsers may come here and be put off contributing if they feel scared to do so, perhaps because they think other members would consider their contribution trifling.

    I guess I'm using my own experience here, when I first presented papers at conferences; the temptation is to think "who am I to talk here, when these gurus of the computing world are speaking too?" What I found was that, as a novice speaker, others who had never presented before would feel they could ask me questions, and in time, they too made their own presentations. At the same time the people I thought of as gurus welcomed me to the fold of speakers and my career was changed after that.

    Oh and back on the stats, government statistics are those I trust least, though I have great respect for the people at National Statistics - they were formerly customers of mine!

    Best wishes
  17. connie

    connie Registered User

    Mar 7, 2004
    Hi everyone, especially bj and Bruce,
    I seem to have stirred something up here. When I post it is always in relation to my own experiences. I agree every case is different, and there is no ideal solutions.

    Can't comment on the men v women as carers, as I am only one woman, somtimes 'superwoman' but still only one.

    Caring encompasses so many aspects, but sometimes I wonder if we try to care for our loved one with Dementia to the exclusion of everything else. Have just had a visit from Lionels CPN. Today she had her SS hat on and came to assess my needs. As I said, anything that gave me time to be 'me', so I coulduse that time to do as I please, maybe care for my grandchildren, maybe supportmy youngest son who is battling testicular cancer, or even lay on the sofa, watch the TV and eat a large box of chocs. But for the moment it seems as though most of us feel we have to consider the loved one with AD.

    Is there a 'right' or 'wrong' way. I leave it to everyones own conscience to decide. Thanks for being here. Connie
  18. susan

    susan Registered User

    Aug 18, 2003
    east sussex
    Dear Bruce and Norman
    I am a female with female hormones - but i agree with both of you on this issue, and as far as statistics go i think they were the worst thing ever invented by who ever - you fiddle the results to prove what ever - as an exams officer i use them every summer to prove improvement in our school - what a laugh!! I hate doing it and whenever stats are quoted now i switch off.
    We are as caring as our up bringing has made us alongside our own individual personalities - my sister was only caring when she was not busy!!!
    Nice to speak to you all Sue
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Susan

    my thanks for your post - I was beginning to wonder if I'd got it all wrong!

    Good to speak to you, too!
  20. emscub

    emscub Registered User

    Dec 5, 2003
    I just wanted to add that I agree in part with Bruceand Norm and in part with BJ.

    'From my experience' (!) I would say that traditional values did encourage a sense of duty in women (more than men perhaps) to take on the all the 'extra' tasks, but that, in a similar vein to Norm's statement, for every woman I now think of who is like this, I can also think of another who is not.

    I know, in my own home, my Mum has a sense that she should be doing it all: working, cleaning, caring etc.. but that my Dad also does all he can to help. I think, as BJ said, perhaps traditionally it is the woman who was raised to see herself in this light and now finds it very difficult to change this perspective of the feminine role, whereas men have largely adapted and are now quite willing to take on these roles, and perhaps always would have been if it weren't for social/cultural norms.

    Hope I haven't offended!

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