1. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Hi everyone. I'm a newbie, although I've been reading TP for about a week now. It has given me so much insight and information about what I have been living through for the past year (to the day!)
    My Mum was already living with me and, approaching her 80th birthday last summer, was showing signs of weakening memory. Things took a major turn for the worse after an accidental bout of withdrawl from one of her prescibed meds. One day she was her normal self and the next she was confused, unable to find all of the right words and with very poor short term memory. AD was finally diagnosed at the end of January. When the CPN visited to do the 30 point memory assessment Mum scored 9 and we were told that she did not qualify for the drugs because her score was too low!!! I had some good advice about applying for attendance allowance and have a social services care assessment for me and Mum. This all went very smoothly and was all completed by the end of April. Mum declined going to a day centre.
    I was then left to my own devices and have been Mum's sole carer since on top of my full time job working long hours most days. I don't know how I've managed really and it has left me emotionally ragged. If my boss hadn't been so supportive, understanding and flexible I would probably have been fired for incompetence. I've also had my own health issues to deal with involving hormone imbalances and the resultant mood swings. There have been days when I have been a cross between a total basket case, a screaming harpy and a sobbing wreck. This has all added a profound sense of guilt at my inability to cope. Mum needs me now more than ever and I am failing her with each passing day, she deserves so much better than that. I feel that I can't go on but am too ashamed to tell anyone. I am alone in all of this, my brothers do not live nearby and for whatever reason are not able to contribute to Mum's care. When I read what some of you are coping with it adds to my shame because my situation is not nearly so bad but I'm still at the end of my rope. I have a week of respite coming up and can hardly wait, although I know it could be a real ordeal for Mum. How I hate myself!!!
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    Dear Lizzie, welcome to TP, and the first thing you must do is get that guilt monster well and truly off your back.

    How anyone holds down a full time job and has an Alzheimer sufferer living with them is beyond me.

    I cared for my mother whilst I was working full time, but she lived in her own home, went to a day centre, and when she became a risk in her own home, went into a NH.

    Wouldn`t you consider a NH for your mother. If you didn`t have full responsibility for her 24/7, you would be able to enjoy your time with her, have some life for yourself, feel less pressure at work and benefit from improvd health.

    In my opinion, you have far too much on your plate and I don`t understand how you can think your situation is so much better than others.

    I think you need to be a bit kinder to yourself.
    xx
     
  3. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Hi Sylvia and thank you for your kind words.

    I know that things can't go on like this much longer but coming to terms with it is so hard. I have tried to look at this from all angles, during some of my calmer moments, but can't shift that 'damned if I do and damned if I don't' mentality.

    One solution would be to give up my job but I love it and really don't want to. I would never get another one as good again. But how selfish is that.

    Another would be to find a NH for Mum but it would be such an upheaval for her that I can't bear the thought of putting her through it, even though deep down I crave the peace and quiet that I never get at home. I am a teacher and can no longer do any work at home. How selfish is that.

    I suppose a halfway house would be to get a care worker in at lunchtimes, although this is not foolproof. I am still haunted by the day that, even though I went home at lunchtime to make sure Mum was OK, I came home in the evening to find her on the floor covered in blood with a 2 inch gash on her scalp and a broken wrist.

    I just feel unable to make the right choice.
     
  4. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    I think you are doing an incredible job looking after your Mum and working full time too, you must be exhausted.

    Wait and see how she gets on with the weeks respite, you might be surprised at her reaction, don't assume she will hate it.

    It may well be time for full time care for her, that doesn't mean you have failed her.

    Take care

    Kathleen
     
  5. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hello Lizzie

    Welcome to TP. You deserve a medal! Don't feel guilty, it strikes us all at some point. I think from what you've said above about coming home to your mum lying on the floor, you need to involve social services. Have a word with your CPN about this. They will be able to help sort out some drop in care for your mum, which at least will give you a little peace of mind.

    I know it's really difficult, but you need to accept that your mum is at a stage when you can't do it all yourself. Why should you give up the job you love? What sort of life would you have? And I'm sure your mum, in her more lucid time, would not want that for you either.

    Enlist some more help. It will go a long way to keeping you sane and easing your conscience (if you don't want to put your mum into an NH).

    Thinking about you at this really cr**py time! Post back and let us know how you get on.

    Best wishes
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Not selfish at all, Lizzie. You have the rest of your life to think about, and I'm sure your mum would hate to think she had ruined your future.

    I think the time has come to consider a NH. You cannot go on like that, your own health is suffering.

    See how your mum gets on in respite, and enjoy the break without any feelings of guilt. Then consider the possibility of making it permanent. That way, you can enjoy your job again, and enjoy your visits to your mum without having to worry about her.

    You've done a great job. Time to hand over?

    Love,
     
  7. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Hi everyone, especially those of you who have taken the time to reply. Your words really help and it is so good to finally be talking about it. When I've considered talking to someone face to face or even over the phone I know I will just break down and not be able to properly say what I feel. This is the answer for me, I can write about it even though I am crying at the same time - so thank you again.

    I am going to call the CPN on Monday, she was really lovely when she visited and I feel that she is the one that will be easiest to talk to and understand what I am feeling. I did a lot of thinking through the night and have decided to start the ball rolling for getting Mum into a care home permanently. She doesn't recognise the house much any more, even though she still knows where most things are a lot of the time. Hopefully this will allow her to adjust to a new environment more easily. I'll see how she goes on her respite stay.

    I know I will feel guilty but seeing her settled in a safe environment and being able to recover myself will see me through. My only worry now is that I will have a battle on getting a place for her. Oh well, at least I have made a decision and it has given me hope for the first time in months. I just hope people don't think that I've given up too easily.
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    You haven't given up too easily, Lizzie. We all have our limits, and we either realise when we have reached them, or carry on and break down completely. Breaking down doesn't help anyone.

    As for the guilt, we all live with that, because we all think we could do more, or we could be more patient........... In reality, we're all doing our best, and there's no reason to feel guilty.

    I'm glad you've got some hope back. Find a lovely home for your mum, and that will be the best you can do for both of you.

    Love,
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    Dear Lizzie,

    I`m so pleased you have realized you were trying to do far too much, and are now seriously considering a NH for your mother.

    Please stop feeling guilty, feel good for acting in her best interests. If you don`t do it now, you will certainly need to eventually.

    You are not the only one who finds it much easier to express yourself in writing. There are many, myself included, who disolve into tears on hearing a sympathetic voice. That in itself shows how vulnerable we, as carers become, after a period of struggling with dementia.

    Let us know how you get on.

    Love xx
     
  10. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Hi again

    What a difference 24 hours can make. This time yesterday I was at my wits end but totally unable to talk to anyone about it. Writing my first post last night was really hard but once I'd started it came more easily. In composing the post I had to put my thoughts in order for the first time in ages and I really turned a corner. I know that in many ways Mum's condition is not as bad as some but coping with it completely alone has been a real ordeal. Mum is not only my Mum she is also my best friend, my companion, my confidante and my shoulder to lean and cry on - a one woman team if you like. I have lost the whole team in one go and it has been devastating.

    Now that I have realised once and for all that trying to carry on alone is not humanly possible for me, in spite of the best intentions that I try to face each new day with, I can start to make the best plans for Mum's future care.

    I would advise anyone who is visiting TP but not posting to give it a try. All you will receive is understanding and support from the wonderful people here.
     
  11. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Lizzie, I do urge you, most earnestly, to stick with your job. It is not Selfish.

    Last year my Mum was diagnosed with AD & put on Aricept (thank God) and I took voluntary redundancy from a well-paid job that I loved, my intention being to get another job nearer home a couple of months after I moved in with Mum & sorted a few things out (perhaps part-time, depending on how circumstances developed). Cutting v long story short, before I started a new job Mum fell & broke her arm, making it necessary for her to have much more "1 on 1" care than she had originally needed, & she has become much more reliant on me than I had ever intended. I'm now living on benefits (which I hate the thought of) after 37 years non-stop working - & of course 37 years Tax & NI contributions.

    I think it was John Lennon who said "Life is what happens whilst you're making other plans". You MUST put yourself as a priority if you are to be able to take care of your Mum. And I mean "take care" in the broad sense, which includes making decisions about bringing in paid carers when you can't be there, and looking at care homes before you are forced into an urgent need for one. You don't stop 'caring' just because your loved one might be under a different roof.

    Best wishes
     
  12. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Thanks for your reply Lynne.

    Deep down I have known that giving up work would not be the answer. I have been on school holidays for the last week and know that I could never cope with the emotional demands of being with Mum 24/7 without the escape and release of work. Even though it has been so hard to keep up with things at work these last months it really has been the only thing that has kept me sane. I have worked at the same school for 17 years and have worked my way up from a part time temp to deputy head - I just couldn't throw all that away now, not even for Mum. (God how heartless that sounds but it is how I feel for my own sake, my livelihood and my future. After all I'm only 43!)

    This afternoon I took the step of ringing one of my brothers. He has his own severe health problems and is genuinely unable to offer any practical help but he has always been my staunchest supporter. I have been reluctant to offload on him because of my overwhelming feelings of guilt and shame but I bit the bullet and told him everything. He was fantastic and agreed that I was making the very best decision for Mum and myself - God bless him.

    My other brother is a different kettle of fish and, although he makes all the right noises about 'helping when he can - I have only to ask' but it is so hard for him to come over more often because of the cost of the petrol. He hasn't seen Mum at her worst and still seems to be rather in denial about the whole thing. He has already expressed his opinion about Care homes in a rather negative and frankly ignorant way so I'm not sure what his reaction will be.

    Time will tell.
     
  13. jeanierec

    jeanierec Registered User

    May 7, 2007
    121
    north yorkshire
    Hi Lizzie

    I echo what everyone else is saying , no way are you selfish but I do understand ,where would we women be without guilt ( sorry chaps I know its not exclusive to women ) but we never see ourselves as anything other than inadequate and we could always do better.....well its just a mindset and we need to lose it , right Lizzie !

    I`ve talked to mums GP and a councillor and our CPN and they`ve all asked me whether we would manage mums care ( eventually ) or whether we would look for a NH and at this moment in time I think it will be the latter and without exception they have said that they are pleased and that it is what they would reccommend.

    Its won`t be right for everyone especially I think if its your partner you`re caring for ( I don`t think if it was my Dan that I could bear to give him up to someone else to care for him ) .

    TP is an amazing place and you really get caught up in other peoples journeys and you really do care about them and they really do care about you so keep posting there`s always someone here for you.

    Love

    Jeanie x
     
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #14 Margarita, Jul 7, 2007
    Last edited: Jul 7, 2007
    Does not sound heartless at all , as I look back to when I made a rush decision & I left a Good Job . 5 years on , I know they say you could not have regret , but I do because like the saying go " if I new then what I No now " says it all really .

    what I did not no back then, , (I was very idealistic ) that I know now. is that the support network is not out they . I am not being negative just truthful and realistic , thats just my point of view .

    I wish you all the best in your decision :)
     
  15. jeanierec

    jeanierec Registered User

    May 7, 2007
    121
    north yorkshire
    Just read your last post Lizzie, when I mentioned mum in the same breath as a NH my son said he didn`t feel very happy about that scenario to which I replied then you move in with grandma and be her carer. I`m not being horrible but its really easy to have an opinion if you are not directly involved and its not your life thats being taken away.

    Don`t mean to sound hard but its that old saying about walking a mile in someone elses shoes if you know what I mean.

    Love Jeanie x
     
  16. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    I do know what you mean Jeanie. My brother may have his strong points and I do love him dearly but, knowing him as I do, he wouldn't have lasted a week in my shoes let alone a year. Anyway he was happy for me to take on caring for Mum so it is very much my decision now.
     
  17. jeanierec

    jeanierec Registered User

    May 7, 2007
    121
    north yorkshire
    You go girl !

    Jeanie x
     
  18. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Lizzy, and also welcome to TP, for what it is worth, I think you made a very wise decision. I wish you and your mum the very best and hope everything works in your favour. I think you have done remarkably well in your career.


    Lizzy, just remember if your brother has a problem with your decision, that is exactly what it is, his problem. Best Wishes. Taffy.
     
  19. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Hi again everyone & thanks for your words of support. I can't belieive how much more positive I feel now that decisions have been made. I'd be lying if I said I haven't had the odd moment of doubt but with Mum going in for a respite stay tomorrow I will have a week to really get my head straight.
     
  20. Claire

    Claire Registered User

    Mar 31, 2004
    88
    Coventry
    Hello Lizzie

    I was in exactly the same situation as you, and I struggled to cope with her condition and a full-time job. I really wanted to keep her at home as long as I could, but had to work to pay the mortgage, so giving up work wasn't an option. A day centre place was an absolute godsend but eventually, after she had a fall and was unable to bear weight for several weeks, we reached the stage where I couldn't cope and she went into a home. After a few months she moved to a wonderful place where she still lives, now unable to walk since she broke a hip. At the time she went into care, she had had two respite placements and when I collected her from the last one I found her sitting very peacefully, with a sweet smile on her face, looking so relaxed that I knew when full time care became necessary that it would be all right for her. And so it has proved. It seemed to me that once she went in that she stopped trying to fight the disease, and relaxed. She is very content, and I am no longer stressed to a high degree. You will feel guilty, but you shouldn't, you have done the best you possible can, and now can concentrate on finding her the best place to live that you can, and you can give her the best of yourself when you visit.

    Good luck in your hunt for a good home. Don't beat yourself up - you've done the very best you can.

    Take care

    Claire
     

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