1. maggier

    maggier Registered User

    Jan 9, 2006
    Is it a common thing to feel guilty every time you leave the person you care for. When I am at home I feel I should be with mum and when I am with mum I want to go home as I feel I am neglecting my family. I want to do the best for everyone and obviously feel Mum needs me more now if only to find the things she loses daily (i.e. hearing aid, purse, Teeth! etc) If it wasn't so sad it would be funny. :rolleyes:
  2. inmyname

    inmyname Guest

    You can only do what you can do .........guilt should not really come into that

    You have a family and a duty to be fit and well to take care of them

    If you run yourself ragged "trying to be all things to all men" then your health will suffer and everyone will be seriously affected .

    I have learnt from bitter past experience that sometimes you have to stand back and look at things from a different angle in order to see the best way forward .
  3. maggier

    maggier Registered User

    Jan 9, 2006
    I know what you say is right but when someone needs you how do you walk away and not feel guilty. or worry that when you do gho home, that is when something bad will happen. Mum can wander at night and I worry that if I am not there something will happen to her. but if I am home I don't sleep because I am expecting her to knock at the door in the middle of the night.
  4. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex

    Of course you feel guilty and worry about your Mum, you are doing your very best but obviously can't be everywhere at once. I used to be in a similar position.

    Is your Mum getting any other supervision or help at the moment? Are social services involved at all or is there any one to share the load with you?

    If your Mum is wandering at night, she is at risk of getting lost or injured, none of which would be your fault, but you would feel guilt about that too.

    Have a chat with her GP or consultant and enlist their help to work out a package of care to suit your Mum, or you will make yourself ill.

    Good luck
  5. maggier

    maggier Registered User

    Jan 9, 2006
    #5 maggier, Jan 9, 2006
    Last edited: Jan 9, 2006
    Social Services have arranged for mum to have someone call at lunchtime to check on mum and maybe assist her making a sandwich, but mum is very much in denial and does not see she has a problem. They offer to do things for her like hoover, or make her some lunch, but she tells them not to as she will do it hersekl when they have gone, but of course she does not do it so she then can go all day with nothing to eat until me or my brother arrive at tea time and do her something to eat. I work full time and my brother works, but we do share the responsibility equally. She is awaiting an appointment with the Department of Pyshciatry of Later Life at the local hospital for a further assessment.

    At night time she does not wander aimlessly but can turn up at my house or my brothers house (fortunately we both live quite near) in the early hours as she seems to think some men are after her and she says they are trying to take her away but she only wants to go with my dad (dad passed away 5 years ago) and if they promise to take her to dad then she will go with them but she does not want to go anywhere else!

    It is very hard to listen to as she is obviously very frightened, and we did have a spell of staying with her, but then she said she wanted to get back to normal and stay on her own. She does have spells of feeling guilty herself and says she does not want to inconvenience us and that we are not to "run around after her as we are busy"

    It is a very difficult illness to deal with and as we are relatively new to all this, I am finding this site very informative and useful, although sometimes it is quite scary too because there are a lot of people going through an awful lot worse than my family at present.
  6. inmyname

    inmyname Guest

    I think your Mum is at the stage of her illness where she should be in care

    However like my Mother It seems she is fiercly independant resents any interference yet is devoid of reality when she deems it OK to turn up at yours or your brothers house in the middle of the night

    I realise that many will say its the illness and you have to make allowances but you and your brother also have lives and families .

    Seems to me that the USA deal with the problems of ageing much better than we do because people are more willing to go into retirement complexes which often include assisted living complexes you can move across into should the need arise

    Here its hard to find such facilities and people seem to resist any suggestion of moving into one hence the kind of dilemma you and your brother are facing
  7. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi Maggier,

    Guilt is a common feeling amoung carers - it often seems that you can never do enough. You can't run around feeling guilty all the time though as you'll soon run out of energy.

    Getting outside help will greatly relieve the strain (and guilt). If you can contact the social services or other organisations, you'll be surprised how much help is out there. Day care centres are a great break for carers and those who need care. Just trying to say look at all the options. Do you have a local alzheimers group in you area - the alzheimers help line should be able to help you with that.

    People young and old like to hang on to their independence, and what is wrong with that. So the more gradual you can make the transition to care the better in my humble opinion.

    It is hard to generalise when dealing with people with dementia, so just make sure that you look at all the options and work out what is best for yours and your mothers situation.

    Kind Regards
  8. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hi again

    I am glad you have an appointment for your Mum to see a psychiatrist soon as this is a starting block for her to have medications and to start getting the help she needs, now and later on as the circumstances change for you all.

    I understand totally the fear both you and your Mum experiencing at the moment, but all you can do is take it step by step, never looking too far ahead.

    My Mum used to have awful anxiety attacks where she wanted to go home to her parents, long passed,and felt she was no use to anyone and a nuisance, she never has been either of those, but to live day in and day out not being able to think clearly and do the simplest of tasks unaided, must be horrendous.

    This stage has passed for Mum and she is now in the later stages, but calm and seems to let the world pass her by safe and resonably happy in her own reality.

    Take care

  9. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    The guilt monster will always be there.
    It is some thing to do with loving the person that you are caring for.
    Get all the help that is possible and this does make it a little easier,but the feeling will always be there .
    I still feel guilty after all these years because when I am "free" that isn't really what I want ,I want us to be enjoying life together,not to be alone and Peg left with comparitive strangers.
    I want our life back and that can never be.
    The only benifit from having free time is to be able to return home in a better frame of mind and able better to cope with being a carer.
    :( Norman
  10. suptowngirl

    suptowngirl Registered User

    Sep 19, 2005
    #10 suptowngirl, Jan 10, 2006
    Last edited: Jan 10, 2006
    Hi Maggie,
    I know how you are feeling. My mom is living alone and is constantly losing things.
    She did start wandering too and we managed to get her back to the consultant for some medication to help her sleep at night (my brother gives her the medication before she goes to bed ) and at least we know she is in the house and asleep. ( She does seem to be at her worst, night and early mornings ).
    We are waiting to get her into a day centre where she will be looked after and our worries will be eased just a little. There is help out there for you but the guilt feelings will always be there. I too hate leaving my mom but we have had her with us at weekends and in the holidays (I work in a school so I have a break every six weeks or so ) but when she is with us she wants to be back home. Before she had the night medication she was ringing us in the early hours, 3 and 4 in the morning and that worried us because we knew she was up and about and she could be doing anything and wandering anywhere. I advise you to speak to your moms consultant.
    Take Care
  11. maggier

    maggier Registered User

    Jan 9, 2006
    Thank you each and every one for your helpful comments. It helps tremendously to know you are not alone with this and that there are people out there going through the same (and worse) just being able to put your feelings down helps a lot. I am sure you'll all be hearing more from me for the forseeable future. Thanks again

    Maggie x
  12. jc141265

    jc141265 Registered User

    Sep 16, 2005
    A thought....

    In a message to a fellow TPer the other day, I realised as I was writing it, that even when you get past the guilt, where you know its unnecessary, that you have nothing to feel guilty about, and that you are already doing almost more than is humanly possible whilst trying to juggle ordinary life and the life of a dementia carer, if you are like me, you just want to be able to get over it all so you can be a little less useless and a little more useful in helping your loved one go through this.

    Don't matter how much I try though, I just have to accept that the pain of seeing Dad go through all this is like an injury and I can't deny it, ignore it and hope it will go away, I just have to keep doing as best I can despite it, for him, me and anyone else relying on me. I think we have to realise that we are not simply carers, we are injured people who are also suffering whilst still trying to look after our loved ones. Maybe keeping this in mind will help some realise WHY it is that they can't seem to be able to do everything that they think they SHOULD be able to do?

    Wishing everyone's guilt away... :eek:
  13. Lynne

    Lynne Registered User

    Jun 3, 2005
    Amen to that thought, Nat & everybody. The practical, nuts-&-bolts issues are enough to deal with, without damaging your own self-esteem while you are at it.
  14. barraf

    barraf Registered User

    Mar 27, 2004
    I feel guilty when I lose my temper and shout.

    I feel guilty when the carer comes and I am going out and Margaret says "Can I come with you?"

    I feel guilty when she falls, was I paying enough attention to her?

    I feel guilty on all sorts of occasions, we all do if we love the person we are caring for.

    My mind tells me I should not feel guilty as I am doing the best I can and no one can do more than their best.

    My heart on the other hand says you are guilty because you are OK and she is not.

    It is all nonsense of course, but real nevertheless, you eventually learn to live with it or you too go under and that helps no one.

    So don't despair, like most of us you will come to change what you can and accept what you can't change and although you never lose the feeling of guilt completely you learn to keep it in proportion.

    Cheers Barraf
  15. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Spot on, Barraff!
  16. connie

    connie Registered User

    Mar 7, 2004
    Barraf, have printed your post and have put it up on my wall. Thanks, Connie
  17. Jude

    Jude Registered User

    Dear All,

    Barraf, I also think we feel guilty because we cannot control what is happening.

    You are right when you say that there would be no guilt if we didn't care so much. Guilt is so irrational - especially when we are doing all that we can.

  18. annewithanee

    annewithanee Registered User

    Jan 13, 2006
    #18 annewithanee, Jan 13, 2006
    Last edited: Jan 13, 2006
    I have just registered on this site today, have been nursing my mum for 4 years now and feel she has now entered the later stages of this wicked illness. Already have derived a lot of comfort from the various comments particularly regarding the guilt issue, felt so alone for such a long time and am so glad I have found you all, just keep doing the best we can cheers! :)
  19. connie

    connie Registered User

    Mar 7, 2004
    Hello Anne, just to say welcome, and hope you will find support and understanding from this forum. Thank you for telling us a bit about yourself, and look forward to reading your posts. Connie
  20. SallyB

    SallyB Registered User

    May 7, 2005

    Perfectly put.

    My Dad lives alone and i feel guilty all the time. It is so nice to read all of this and know that i am not abnormal!

    Just come back from tunning Dad's TV in as he couldn't see Millionaire!


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