1. Tressa

    Tressa Registered User

    May 18, 2004
    N. Ireland
    Hi all,

    I haven't been on TP much lately and the last time I off loaded with a moaning session everyone was great so I hope you can help again. My mum was diagnosed with AD about 11 years ago, thankfully it has been a slow process and she is probably only showing signs of the middle stages now. She is still able to live reasonably independantly but really could do with more care. I am her main carer and her sole carer and have been even before AD came along, she suffered from very bad depression before that and relied on me, so all in all I have been caring for her from I was 15, I am now 35. I have one brother and 5 sisters, all but one of the family live within 5 minute walking distance of my mums. And its the same old story, they dont want to know. One sis does her best but she has her own demons to battle with, two sisters take absolutely nothing to do with my mum and have stated they never will, the other sis is about as reliable as an ash tray on a motor bike, and my brother calls once a week to be the wee son!!

    Ok, i will get to the point. I am planning to get married next year to an absolute Saint, only problem is, this saint lives in Belgium, and has his own business over there. I made the painful decision to move and told my family praying that they would pull together and take some responsibility, of course they didn't and now the family is at war. My mum's care manager assures me I am doing the right thing and that she has people on her books that are living in their own home and are at a greater risk than my mum and manage ok. I am planning on putting in private care as much as can be afforded but at the end of the day the only person my mum wants is me. It would take too long to tell you how incredible that need is from her for me, and she can be very manipulative, always has been. It has always been suffocating and has been the main cause of me still being single at 35!!

    I love her to bits and its my own fault for making her so reliant on me but to be brutally honest I want out, I want to run away and never be seen again. My Fiance is truly an amazing man and has changed my life for the better and I dont want to lose him but how can i leave my mum when I know that she will be neglected. I hate my sisters for what they are doing and feel so angry all the time, too angry sometimes, its not healthy. I am supposed to be leaving for Belgium in 4 months and I am truly torn, confused and distressed by the whole thing. Sometimes I just wish I could go to sleep and never waken because I feel that is the only time I will ever escape from the nightmare I am in.

    I have even toyed with the thought of taking her to Belgium with me but then it really would be me looking after her 24 hours a day....god that sounds so selfish, I feel I am no better than my so called family.

    I am sorry for rambling on, and I am not looking for everyone to tell me that I am right to be doing what I am doing because I have my friends telling me that, it doesnt make the decision any easier. What I would like to know is, has anybody else been in a similar situation.........not as in running off to Belgium but as them being the main carer and leaving their role and how they coped, or just any comments that people can give me, even better, does anyone have a solution!! I know, thats asking for a miracle, or just ideas in general. By the way, my plan A is to come back every month for a week. Or has anyone taken a loved one to another country to live with them? Ok I will shut up now.

    Thanks everyone for listening.

  2. blue sea

    blue sea Registered User

    Aug 24, 2005

    I'm positive you're doing the right thing in going to Belgium. But it will be hard and you will feel guilty - you shouldn't but you will because you're a lovely kind person. All the members of your family have an equal responsibility for your mum's welfare. You have taken on more so far but that doesn't mean you have a moral obligation to carry on doing so at the cost of your own life. Only they can decide what responsibility they will take. I wouldn't worry about that - it's their problem.

    I am not in a comparable situation but I feel I understand how you are feeling. I am an only one and my dad's only relative who can help him. I looked after him until I couldn't cope any more., The hardest thing I have done in my ife is put him into residential care. However I know I did the best thing overall for both of us. The best way I found of coping was to mentally give over the responsibility to the carers. That doesn't mean I'm not involved in his care or decisions, just that I've had to distance myself a little emotionally in order to manage my feelings. I just keep telling myself that I am doing my best, that I do deserve a life as well and that in the end I'm no use to him if I'm stressed out, unhappy and depressed.

    I think it's really important to value your own life as well as your mum's. Belgium's not the the other side of the world - you can get back in an emergency. Planning to spend a week a month might turn out difficult as the contrast of you being there intensively for a week and then not at all for 3 weeeks could prove tricky for you and your mum. I would be tempted to let the care manager sort everything out regarding practical day to day care. Phone and make regular short visits, say a weekend every 3 or 4 weeks. Keep upbeat and positive and ignore the emotinal pressure as much as you can. You need to stay strong. Your fiance deserves your time and emotional involvment in starting a new life with him. This doesn't mean neglecting your mother, just asserting your right to have a separate life. The fact she has always been manipulative makes it especially difficult but this is your big chance for happiness as an adult -grab it!!

    Keep us posted.
    blue sea
  3. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Tressa hi,

    Go for it - get out and get a life.... You clearly have sacrificed far more than is reasonable. You have rights too and the right to a life that does not involve 24/7 looking after someone - even if that someone is your mum.

    Probably the rest of your family will not rally round but the 'state' will. The UK has a good medical, care and social security system and nobody is going to die on the street or be badly treated in hospital or care home. (Of course there are some horror stories but for most of the time the system works well enough) Your mum with AD will forget you - the family and everything except perhaps the folks and people around her then even they will vanish....

    It is not worth ruining your life - take this wonderful opportunity and be happy.

    There are some of us - mainly the married ones - who feel that it is rewarding to look after their spouse and to quote a recent thread 'are scared of what will happen when that spouse with AD dies and they no longer have a function.' But being married is very different from being the child and giving up their own life.

    This is not a reheasal - take your life back and let either the rest of the family or the state cope.

    This may not be politically correct on this forum but I really believe what I have written.


  4. Lynne

    Lynne Registered User

    Jun 3, 2005
    Poor Tress,
    you must feel like you're being pulled in half. You have been BRILLIANT for the last 20 years, and no wonder you feel bitter that your siblings have just let you carry the load all this time. It's a wonder you've still got your sanity!

    I can't help you with any personal experience of what you describe, but just had to add a response of praise & encouragement to your thread. And a risky suggestion ...

    IF you trust her judgement, my suggestion would be to take a deep breath, & talk to your Mum's care manager about the following: Make sure the Care Manager has complete records of your brother & sisters addresses & contact phone numbers. Then force yourself to take a fortnight off, having told your Mum you are going away on holiday - go away if possible - having also made sure that the siblings have contact numbers for the CM, doctor etc. A lot of heart-hardening required for this of course, but you will be forced to bite the bullet eventually, and quite soon. Hopefully, a fortnight may be sufficient to loosen the suffocating bonds and exclusive reliance on you, and get others involved. And you don't "KNOW she will be neglected", you fear it. You must do something drastic to change it.

    I realise that there must be a hundred and one 'reasons' why you'll think the above can't work for you, but do think about each one, and analyse whether you are acting our of habit rather than true need. Maybe your job or personal arrangements with your fiance make it impractical, but impossible?

    & I do so identify with your comment "its my own fault for making her so reliant on me ..."
    My Mum is still quite capable in many respects (still in her own home) and I often wonder if I should do less shopping, errands etc. for her, so that she is 'forced' to go out more, and maintain such social contacts as she has. Even if it is only shopkeepers, librarians and neighbours who she bumps into while she's out, that should be better than sitting at home, right? On the other hand, she buys things on impulse, regardless of the fact that once they are out of the trolley they are going to be damned heavy, or have sharp corners which bruise her shins as she carries them home.

    So many decisions, so much guesswork and wondering how to do the 'right' thing when there is nothing right about anything where AD is involved ...

    Best Wishes
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello Tressa

    As the daughter of an AD sufferer in a care home, I know that in our situation it was the right decision to find 24 hour care for her, we visit her and know she is safe and well looked after 24/7.

    If your siblings are so concerned for your Mum, now is the time for them to stop complaining and start doing! You have done so much already, please try not to feel too guilty, ( you still will, we all do ) it is time for you to live your own life.

    As a Mum myself, I say go for it, there is a whole world out there waiting for you, grab whatever happiness you can, life is for living. Nobody should expect their children to put their lives on hold for them.

    I wish you and your fiance a long and happy life together.

  6. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Tressa,

    Although you were "not looking for everyone to tell me that I am right to be doing what I am doing"... it's kind of hard, as outsiders looking in, not to say it. Certainly no one could ever accuse you of not doing your share of caring for your Mum!

    I found your comment "its my own fault for making her so reliant on me" quite surprising because as you have cared for your Mum since you were 15, I would think that you didn't have much of a chance to avoid that happening - hardly your fault.

    Sorry I have no ideas but your plan A sounds very sensible, with your Mum being looked after by, what sounds caring staff in her home. Who knows, your brother and sisters may even get their act together too. Now go and enjoy some well deserved happiness!

    Best wishes,
  7. Lynne

    Lynne Registered User

    Jun 3, 2005
    Sue/Stimpfig lives in Germany, with her Indian AD-Mum, so she may be able to throw some light on the home-and-away situation. However, AD sufferers are generally very resistant to learning anything new, and anyway you would just be exporting the 'problem' with you, which would (in my opinion) put a terrible strain on a new marriage, as you would still be getting pulled in half emotionally (not being nasty, but you did say Mum can be manipulative).

    It does sound as if your Mum is still quite (reasonably) capable of adjusting to a change of carer/s, but a new country?

    You must make your own path, and try for your own happiness.
    To put it brutally, Alzheimer's can't be stopped, even by the most devoted daughter's care. It WILL catch up with your Mum, whether you are living here or across the channel, and there's nothing you (OR your brother & sisters) can do about that. If you move to Belgium,
    A/ she MAY cope very well; although she will probably still ask you to come back every phone call OR (again being brutally honest & pessimistic)
    B/ she may go downhill very quickly,
    which could happen anyway even if you chucked away the rest of your life,
    and whether you were physically by her side or not.
  8. Lulu

    Lulu Registered User

    Nov 28, 2004
    Hello, Tressa.

    I can't offer you any advice, but I know how difficult a situation you must be in. All I can offer is this:

    Amongst so many worries and fears regarding our own situation with my mother, I also fear for my own children should they ever have to deal with me in this way. I really am quite convinced that this is to be my fate, and the thought that my children should ever have to do what I am doing fills me with horror. In fact I have told them that no matter what, they should live their own lives. Yes, they should make sure that I have things in place, am not being ill-treated, hungry or wanting, but then to get on and live their own lives.

    My own Mum would have said the same to me had she known what was to be.

    I believe that you are stuck between the devil and the deep blue sea. You'll feel bad whichever way you go -I feel guilty day in day out, and I am here to care for my Mum! As a Mum myself, seeing now how short life can be, you have to do what is right for you .....and live your own life. She would want you to be happy, and you so deserve it.

    This is so hard for you, and I wish you all the very best.
  9. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    Hi Tressa, Hi Lynne

    I have been wondering whether I should now put the question to TP myself in reverse order. I don't know if my story will help you but here it is:

    Tressa, my story is pretty much like yours except that I have no brothers and sisters. My Dad died when I was still at school. In retrospect, mum kind of went into a shock, never learnt to cope and although not physically disabled or anything, my mum just couldn't manage things outside of a household. Slowly, she became increasingly possessive of me, her life had always revolved around her only child . Slowly, she developed anxiety neurosis. I just had to take care of everything right from 17 onwards and my mum, like yours became totally reliant on me so much so that friends said to me that 'I was spoiling her' but even then, I knew without me she would be lost. In fact, I took a Masters degree in Psychology just to be able to understand my complex relationship with my mum.

    Like you, I stayed single until 35 for the sake of mum but then I met my 'saintly' husband who happened to be a German national. Friends of decades said to me that it was high time I lived my life and that I wasn't married to mum etc. etc. and so, I came away to Germany organising all the care I could back home except that within 6 months, I got frantic calls from India saying that my mum was looking like a skeleton, was knocking doors of neighbours in the middle of the night and telling them about her persecutors . I had to rush to India . I was shocked to see the state she was in (don't intend to scare you) . She had slid down the continuum and now suffered from Paranoid schizophrenia, which I would say is worse than the Dementia she currently suffers from.

    My husband, bless him, is a knowledgeable man in many respects, knew what was happening. We decided to bring my mum to Germany - the first time I brought her on my own; she was reluctant, so I brought her under sedation, so to say. But being of non-European origin, we had other things to contend with -papers, permits, etc and my hubby did all the running around to enable us to be her official guardians and extend her stay here.

    So far, I managed it all . It has been stressful but, just as in your case probably, as long as my mum gets to see me everyday, she's fine and no real trouble as she can be when in the care of other people. Luckily, I have a job as a communications consultant which allows me to come home several times a day to attend to her needs. I also engage other people from India/Sri Lanka from time to time or when the need arises, to be there with her. She has been going to a weekly group too - I must say, they have an excellent Alzehiemer's network here throughout Germany and everyone is so understanding and willing to help; I found language to be no barrier at all. The level of awareness of this disease is pretty high here and it seems like there is one sufferer in every family.

    We do take her to Indian restaurants, Indian concerts, temples etc. here and I established a circle of friends - Indo-European couples , one of them who had to bring her mother from India too - same story - only daughter; mum suffering from Parkinson's.

    So, for me, bringing my mum here worked in that I am at peace which I wasn't when she was back home, I don't feel guilty and my mum really doesn't come in the way of my relationship with my husband. She seems to spice it up with her Dementia humour and we have hearty laughs at times. There have been phases when she was extremely aggressive, has smashed our front door made of glass and I am hoping she won't go through that again.

    I understand your dilemma but considering the long and close association with mum, it wasn't easy for me to 'abandon' her, esp. at a time when she needed me most. I wasn't abandoned as a child, she was always there and had given me a lot of love and care. So, for us this was the best solution until now.

    My new problem is she will turn 80 next year and no insurance company will extend her insurance (remember, she is non-European :rolleyes: ) and we are now discussing relocating to India. It means a restart and that's our new dilemma. Just in case you are wondering, there aren't any special EMI homes in India for this concept is very new and people are still trying desperately to hold onto family traditions although globalisation is bringing in new values in Indian society too.

    Meanwhile, I have made 3 trips with mum to India for different reasons - passport renewal, eye operation, her pension problems, my commitments there etc. I am wondering if I can really manage the final fourth as the last one was an extremely difficult one when she wandered out of the transit hotel.

    So in comparison, Belgium and England don't seem that distant and I am sure you could try different solutions. Would you be able to consider a suitable home in Belgium so that you could still see her on a regular basis ? I suppose you won't have all those problems that non-European citizens face when it comes to such things.

    Sorry, if I bored anyone. I should probably put up a web-site with a link :D

    I wish you all the very best. Don't forget to take care of yourself.
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Tress, take heart in what your Mum's care manager says. They will fill the gaps, you are only 35, you have a right to a life of your own my love. Your plan of coming back over once a month or so also shows how much you care. Let SS take the strain, dont let your family tell you how to live your life, you didn't do that to them or they would all be helping now! Go for it girl! You can phone, write etc with your Mum and with SS and your family once they get over the fact that you do have your own life same as them. Love She. XX
  11. Tressa

    Tressa Registered User

    May 18, 2004
    N. Ireland
    Thank you

    Thank you so much to everyone who replied to my plea. You have all given me such encouragement and I will be eternally grateful.

    What makes it so hard is knowing that my family won't rally round when/if I go, they will punish me for leaving and because of my decision to leave I just feel that I am abandoning her. If it wasn't for her I wouldn't be here and as Sue states I am leaving her when she needs me the most, and I just think, how can I do that to her? I have tried in the past and recently to get her out on day trips with the likes of Age Concern or out to lunch with the Careworkers but she refuses to go. She would walk over hot coals if I was with her and the rest of the family won't take her anywhere so if I am not there she will just be left to vegitate.

    I know I deserve a life also but at what cost? I read the stories on TP and nobody abandons their loved one, all of you who replied to me have hung in there and haven't thought of yourselves so why do I have the right to a life more than anyone else?

    Thank you again everyone, I just can't thank you all enough for taking the time out to reply to me, I hope one day soon I can return the kindness.



  12. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    #12 Mjaqmac, Dec 1, 2005
    Last edited: Dec 1, 2005
    Dear Tress

    You did me the kindess last year of talking some sense into me.

    You urged me at 39! to go ahead and get married. I did and am happy. You said I had nothing to feel guilty about and that my happiness counted and I must grab it. How many times do saints come along in girls' lifetime T? You and I both have been lucky and if you don't grab him you will regret it for the rest of your life. I know the pain you have been through with mum. And yes, it will be very very hard for you but you weren't put on this earth to play Cinderella to the family. That was the trap as the youngest that I fell into and now at 39 I may never have my own family. You mightn't think you want this now T but at 35 you have time to marry and decide before the biological clock approaches midnight. These things will matter to you in time, if they don't already.

    Fly the nest NOW.

    Tress please overcome this guilt and go to Belguim with Saint. You really owe it to yourself and him. Nothing lasts forever grab what you can while it's in your hand. You advised me to do the same last year, and you were right.
  13. MichelleE

    MichelleE Registered User

    Nov 28, 2005
    Bedford UK
    Go for it. You are doing the right thing. What are you going to do? Wait for another 20 years?
    I like you have been my mums sole carer for 11 year, happily on 18 month with the level of dementure she has now.
    My friends tell me to move on and let my sister (much like yours) take her share. But do I listen? So I'm giving you the advice i should probably be taking myself.
  14. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Tressa,

    "all of you who replied to me have hung in there and haven't thought of yourselves"

    The carers on TP are caring people - all of us 'care' in some way. Some are full time carers, some visit often, some occasionally, some live many miles away - but we're still all carers, hanging on in there in different ways. You are, and always will be one of those carers, however you choose to live your life.

    You're bound to feel guilty. I feel guilty because I think I don't see my Dad often enough. I'm thinking only of myself when I have a day off from work and decide to visit a friend, instead of going to see my Dad. I bet everyone who writes here can think of times when they've done something for themselves when they could be doing something for their loved ones. We're all carers but we're also all human.

    As a human being I reckon we all need to be a little selfish now and then for our own good and, consequently for the others who rely on us.

    And don't forget that things can change. Who knows, maybe your Mum will start to want to go out on day trips, perhaps you're holding her back! Sorry, that's probablya silly thing to say but I just wanted to point out that it's not likely to be all bad for your Mum, despite what your family may have you believe.

    And even if it all goes pear-shaped, I'm sure that you still have a Plan B, just like Sue decided to put one into action, but unless you give Plan A a whirl, you'll always wonder how it could have been. When you get as old as me (!) you'll know that these opportunities don't come along very often in our life times!

    Very best wishes,
  15. Tressa

    Tressa Registered User

    May 18, 2004
    N. Ireland
    Thanks Again

    Thank you again to everyone who took the time out to help me. What would we all do without TP. It is comforting to know that there is always a friendly email not too far away when you feel like there is no one else going through what you are going through. You are an amazing bunch of people.

    Thank you.
  16. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Go for the new life - enjoy it - you deserve it BeckyJan

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