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Subject:

Caring

  • 19/05/2008 @ 17:15 Ayesha said:
    Ayesha
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    I am a carer for my mother who suffers from various health problems affecting her mobility, mind and ability to carry out normal day to day tasks. She naturally gets very depressed and yesterday was a bad day. She was crying and saying' why do I have to be like this?' It is hard to know what to say to her, as I know that if I was like she is I would be depressed and feel life was not worth living.I am constantly on edge as she also tends to fall. The doctors have given diagnosis of small vessel disease and normal pressure hydrocephalus and it is a case of having to accept as this is how things are going to be. But at times I resent her and this is what makes me so guilty, as she cannot help how she is, but I don't feel she is the same person as she was.My father is also around too and they are both dependent on me.At times i feel that my life is over and I have to be here to take care of them, and then i feel selfish. so it is all a mess.
  • 19/05/2008 @ 18:35 sleepysky said:
    sleepysky
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    Hello Ayesha. This situation must be very painful for you. We do not expect to become carers of our parents. Recently, my mother has shown signs of memory loss and confusion and I am deeply worried about her. I have just started married life and I fear that I will be left with a very difficult choice if she becomes very unwell. I know from a good friend how hard that life can be. It is quite normal to feel some resentment and that your life has been taken away from you. Do you have any siblings who can share the responsibility? Or some local respite care to ensure that you have breaks? I am not sure what country you in or what stage of life but I know that in the UK you can get financial support for care. It is a lot of responsibility and it is very easy to feel alone. I have found that you can share anything here on Big White Wall and I hope that you find it a place where you are able to let go of your feelings and find some relief. Best wishes.
  • 19/05/2008 @ 19:34 Swon said:
    Swon
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    Hello Ayesha and welcome.

     

    I don't think you should feel guilty about the way you feel because, right or wrong, it's a perfectly natural emotion. You don't give any clues as to your age but I guess you aren't too old and maybe feel your life has to be put on hold indefinitely.

    The fact that it upsets you to think like that at all says to me that you are a kind and caring person; otherwise you would just hand over responsibility to someone else and walk away.

     

    So, what to do? Well we don't at the moment know where you are but as sleepysky said, in the UK there is a lot of help available for people who have to care for dependent relatives, your citizens advice bureau (or equivalent) should be able to advise you. Come to that, so should your doctor or health centre.

     

    Also, and this may not be a possibility, if your parents have a property, could they sell it and move into some form of sheltered accomodation where they could be cared for by professionals.

     

    I'm sure there are many other ways of providing the care that your parents need without putting your entire life on hold but also without feeling you have abandoned them.

     

    Do continue to come back here, just to rant if you want to - no-one will mind, and please let us know how you get on.

     

    Take care.

  • 19/05/2008 @ 19:41 UMxx said:
    UMxx
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    Hello Ayesha,

    I just want to say that although I haven't anything else to add to my friends above that life must really be very challenging for you know and I am thinking of you,

    Take care UM x 

  • 19/05/2008 @ 20:03 Ayesha said:
    Ayesha
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    Thank you for the really kind replies. I live in Surrey and my mum does go to a day centre twice a week.So that at least does give myself and my father chance to go out or have time to ourselves.Its just that sometimes it all gets me down, at times I don't know where to turn or who to talk to. My husband works abroad, when he is home he supports me well.He does get concerned that I am coping alone but to be honest when he is here I tend to take out my irritations and frustrations on him which is not fair so it is better that he is away.It is comforting to know that I have found somewhere where I can at least talk to people.Thank you.
  • 19/05/2008 @ 20:05 Swon said:
    Swon
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    Hi Ayesha,

    I'm also in Surrey so I know there is plenty of support around here - good luck.

  • 20/05/2008 @ 00:54 cate said:
    cate
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    Hi Ayesha. and  welcome. I wonder if there is anything harder than being a carer for dependent loved ones.  There are the emotional and physical demands  as well as finacial. Thousands of children here in Australia are also in a situation where parents are dependent on them. They struggle with a school load,social pressures and the constant pressure  of having roles reversed . Life can be so cruel and difficult. 

    I hope you are able to find some support from a group in your area and of course stay in touch with us and become part of the community here.

     Hugs ,Cate xx

  • 22/05/2008 @ 00:54 UMxx said:
    UMxx
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    A young workmate called me yesterday to tell me that she was resigning from her job as she needed some time out to be more available for her mum who has been struggling with a long time mental illness - and is now back in hosptial. 

     

    She is under 30 and her parents are separated and so she is the one who has to (?) pick up the responsibility and knows that she can't do this on top of a crazy "full time plus" job - and she knows that she needs some time for herself and her partner too.

     

    I was thinking about Ayesha when she was telling me - there are a range of groups around for carers but they are not really "natural groups" and I wonder what it is like for carers generally in feeling isolated and dealing with the stresses of care and responsibility without really useful support - apart from a fortnightly cup of tea with a bunch of strangers - often there is not even a faclitator.

     

    We've got along way to go as communities trying to make an impact that really helps people don't we?  We just don't seem to get the focus right and of course there is always the issue of who will pay for the organising of the supports needed.  

     

    The Wall is great for those of us who have found it - I wonder what everyone else is relying on?

     

    Ayesha - how are you going this week? 

  • 22/05/2008 @ 16:47 Ayesha said:
    Ayesha
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    The internet really is a tremendous help in accessing information. I have looked at groups for carers, but have not got around to contacting anyone. I think it is the feeling of being totally alone sometimes, you don't feel like burdening others with yr problems. At one point when I was feeling very low I thought about the Samaritians. With people living much longer now it is going affect most peoples lives, having parents to care for. But I know from my experiences I would not like my children to have to look after me, I know how my feelings have changed towards my parents and I don't want my children to feel the way I do at times. If a person has their health in old age then its fine, but to not have any quality of life is what is so awful and very sad to see. Thank you for the support of those who responded to my first post.

  • 25/05/2008 @ 13:45 sleepysky said:
    sleepysky
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    Hello Ayesha. I can see that caring requires a certain ritual, possibly quite a tedious one, that feels quite constraining and isolating. It is helpful that your mother goes to a day centre but I see that you use that time to be with your father. Do you do anything that is just for you? I don't mean finding a place to share with other carers essentially but time and space that is purely for your pleasure? Do i understand correctly that your children are no longer at home? Best wishes.
  • 25/05/2008 @ 15:05 Ayesha said:
    Ayesha
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    My son lives away, my daughter is at home temporarily while she looks for a place to buy, she works and come back quite late,so really we don't see her very often. When my mother goes to the day centre it does mean that my father also gets time to do what he wants without having to worry about mum. I do voluntary work once a week, teaching computer to older learners in an 'active age centre', which i enjoy. But the hardest thing is everyday seeing my mother and how she does not really have any quality to her life as she cannot move around very easily without fear of falling, she can't cook,can't pop to the shops, in fact her life is very restricted.She gets depressed which I can understand. She cries as she says 'why does she have to be like this?'She is being treated for depression but it is a slow process. At times I get very weary of the situation esp that my mother and father are totally dependent on me to look after them, cook, be around and there seems no way out.

  • 26/05/2008 @ 08:51 UMxx said:
    UMxx
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    Dear Ayesha,

     

    The role that you are filling for your mum is a hard one - even for those who care on a professional basis - I used to work with aged care nurses and one of the things that they needed to talk about was their experience with patients who were so mentally alert that they felt depressed with how they no longer had a quality of life.  I understand that there is much grief in feeling let down by their bodies,  although they are mentally very able.

     

    The same goes for those who have to witness this - but I can only imagine how much harder this is when you are hearing your mum and her upset with questioning why life turns out this way for her. 

     

    The note in your words which I hear loudly is the sense of desperation that you feel there is no out for you.  So although I know that you are doing your best on your own merits I wonder if you had thought seeking support from a professional to work with you around your feelings.  You sound low and a bit like you are lacking hope and I am worried that you are soldiering on with out getting enough emotional support.  

     

    I see that you have worries about feeling that you might be burdening others if you join a support group - my sense is that such groups exist so that the members can support each other - you will find that you are not the only one to feel like your role is sucking the life out of you - there is only so much giving we can do without feeling absolutely empty and lost.  You are clearly a generous giver - on the day that your mum goes to respite care - you are volunteering in your active aged learners - which is a great thing.  I respect your commitment but would suggest that you might consider something that lets you do something that is just for you, about you and gives you something to keep you going for the week.  I wonder if you could find some other care for your mum so you can have some time for yourself.

    It is important that someone looks after the carers - it would be awful if you became ill because you are throroughly burnt out - the Wall is a great place to come to offload and receive emotional support.  If there is something that we can offer in terms of support now is a good time to seek it - it just so important that you regard yourself as an incredibly important person.  As an important person you need to give yourself a high priority and seek out what you need to help to feel better and stronger to be with your mum.

     

    I am sorry this is a long preachy message Ayesha, I am worried about you and guess I have seen too many others wilt under the pressures of caring for their parents with special needs.  My thoughts are with you and we are here to support you in our best way - I just want you to consider how you might fix a plan to help look after yourself.

     

    Many big hugs - UM xx 

  • 26/05/2008 @ 12:02 Crowsister said:
    Crowsister
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    Well.  Ayesha.  You have every right to feel resentful, angry, lost, bitter, and furious.  In fact, it would be odd if you did not.  You are a person, with an absolute right to personal feelings.  To me, it looks as if you care for your parents with great honour and consideration and treat them well.  That is absolutely fantastic - that you can do that, and be you, and go on, and do voluntary work as well.  Expressing the resentment and hurt and loss is natural - you are suffering a bereavement - the mother you used to have is no longer there, and the person she has become is sorrowful and mourning the loss of her own freedoms.  Feel free to feel the emotions, and validate them, honour them.  Feelings are neither good nor bad, they just are, it is how we act upon them that matters.  Use as much help and support as you can get in the community, for you, your mother, and your father.  And vent - those feelings need to be heard and acknowledged, and you need to know that feeling them does not make you bad or wrong in any way.  Venting here is probably a really good place to do it, but maybe you need to find someone local/professional to listen to you also?  But do try to have some fun, somewhere, anywhere, if you can.  Fun is essential for life, I think - anyway - good luck.
  • 08/06/2008 @ 08:02 UMxx said:
    UMxx
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    Just thought I would put a call out to you Ayesha to see how you are going. I went for a walk today and saw a woman taking an elderly woman out in her wheel chair and thought of you.  Let us know how you are going?  UM xx
  • 08/06/2008 @ 16:21 Ayesha said:
    Ayesha
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    Hello UM, thanks for thinking of me. Things are much the same. Some days I cope better, other days not so well. But I try not to let my parents catch my mood. My mother had a fall last eve so she is feeling a bit unsteady and down today. I took her out to the supermarket today, for cat food, in her wheelchair. That would be funny if it was me you saw...

    She goes to a new centre for therapy to help with her depression twice a week now so that means she has a change of scene and also that I have free time...and it is lovely especially if my father goes out and I have the house to myself, it is such a sense of freedom for those few hours. I do find that I look forward to bedtime the most as once she and my father are in bed some tension is lifted for a few hours.

    anyway thank you again for yr kind post.

     

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