New here - Feel like walking away !

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lost boy, Apr 8, 2008.

  1. Lost boy

    Lost boy Registered User

    Apr 8, 2008
    2
    Bradford
    Hello,

    I'm 47 years old and my wife, Sue who is 54 years old was diagnosed with Alzheimer's 3 years ago. I am working full time and have been looking after my wife, coping with everyday household chores and just basically plodding through life on a day to day basis. Both Sue's family and my own family know about her condition and the fact that I am struggling to cope but, never offer any help other than "Well, I'd do this and I'd do that". They won't even pop round for a cup of tea and a chat!!!

    I have been married to Sue for 9 years and although we have had 5 or 6 good years, the last three years have been hard. She has been starting to deteriate since christmas and I am finally getting help for Sue through social services but, feel completely alone and also feel that I don't count in life.

    I don't want to sound selfish and I love my wife but, I feel life is going to pass me by. I get so frustrated, angry and feel unable to cope with the situation sometimes.

    I guess I'm just needing a shoulder to release my frustrations :eek:

    Sorry to vent my anger and frustration here but, does anyone else here feel alone ?
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Hello Lost Boy. :)

    I am so sorry you are another, having to cope with Alzheimers at such a young age. But whatever age it hits us, we all feel our lives are on hold.

    It is particularly difficult for those of you trying to hold down a full time job and caring at the same time. I`m glad Social Services are providing some support at this stage.

    I hope by finding Talking Point [TP], you will realize you are not alone, there are so many of us, and we all know and understand the isolation and loneliness that comes with being a carer.

    There is a lot of frustration, anger and resentment around and you can offload your feelings here. You won`t be thought selfish, we all know and understand.

    The mutual support this site offers is exceptional. I hope it will help you as much as it helps so many of us.

    Keep posting, offload as much as you need to. There will always be a sympathetic ear here and someone to share your frustrations with.
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Lost boy

    welcome to Talking Point.

    Your story is not unusual - that is one of the things about the forum, that others have been in roughly the same boat.

    After being married for 23 years I was about 44 and my Jan was 50 when her symptoms started, though because of her young age diagnosis was not made until some years later.

    16 years later here I am, and Jan is in a care home.

    I too was in full time work with a 50 mile daily drive to the office, and often further driving of 200-400 miles around the country while still needing to be home in the evening to cook a meal and care for Jan. We had no help.

    Both our families were quite a way away though mine at least tried to be helpful. A thing to watch is that we may appear to be caring so well [we put a brave face on with any visitors] that other people feel it best not to offer help.

    It will certainly seem as if life is passing you by as things progress but I could not see any alternative if I were to care for Jan, and there was no question of my not doing that for as long as I could at home.

    oh yes, I never appreciated what loneliness meant until Jan's condition worsened.

    For my part I could do nothing about anything to do with my own life until Jan's condition worsened to the point that she had to go into care. There wasn't time, there wasn't energy, there wasn't real inclination - and since I collapsed into bed exhausted each night, I couldn't even think about it then. It was just a case of getting through each day.

    After a spouse moves into care, the days seem endless and at first the only focus is on visiting as often and for as long as possible.

    The key it seems to me, as with so many things, is that you can't force anything on your own behalf to get back in the stream of life. Besides anything else it seems like a betrayal.

    However there came a time for me when, instead of driving straight home after a daily visit as I always did [this was a year after Jan moved in to the care home], one evening I turned left at the M3 and just drove.

    For me, besides the huge sadness of seeing my wife so badly afflicted, the worst thing was to realise that I had no idea how old I would be when eventually I could resume my life fully, albeit without Jan.

    After 16 years I still have no idea, though I have been able to split my life such that I can start to rebuild something - and this enables me to care for Jan that much better when I see her.

    There are no answers here, only experiences and coping mechanisms, and nobody is an expert, except in their own situation.

    However, in the seeming absence of any practical support at all outside the fine members of the forum, it has been a major support for me.
     
  4. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    Hi Lost Boy

    Well, firstly, welcome and secondly, you are not lost anymore. I am relatively new to this site and have found that without it I would totally be lost.
    There is much support and advice given from lots of caring people here, so please do take advantage.
    I look after my parents, and I have to say, I would like to run away many a time, especially when dad is in a bad state. I'm also in my 40's and I really feel as though I have lost my personality along the way.
    I can't look into the future at present, but for me when things do eventually come to an end, my husband and I have said that we are off for a very well deserved holiday!!!
    Unable to give you much advise other than keep coming to TP and yes, let off steam, we all do so at various stages.
    Good luck
    Andrea
     
  5. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hello Lost Boy

    I felt very much like a lost girl (woman) until a few weeks ago. This site has helped enormously. My husband has a dementia and I can remember feeling that it has taken over my whole life and "I can't live like this". I felt like I was disappearing and other parts of me were taking over (parts that I didn't particularly like or want). I became very controlling because I was scared of things falling apart (or me falling apart). I came to realise that I no longer had my Alan to properly share things with as he no longer understood things clearly like he used to. I really felt very alone.

    I'm not sure really what changed things but things have changed. I feel less alone and Alan seems happier. I think one of the best decisions I made was to contact the Alzheimers Society and they sent someone round to see us. This really started a change (she understood, she gave me time, she gave guidance and reassurance and information. She also gave clarity which proved very enabling.

    I really do believe that you are important too (as well as your wife) and that your needs also need to be met in order for you to offer your wife the best you can. I do hope you find what it is you need and in the meantime I send my very best wishes.

    Helen
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Lost Boy

    I too understand the feelings of loneliness and frustration. I'm afraid it goes with the territory!

    I care for my husband, and like you, we hadn't been married long when John was diagnosed. I don't know whether that makes it easier or harder. For couples who have been married a long time, it's the change from long-term partner to a dependent relationship, and the loss of the enjoyment of retirement.

    For us, it's the feeling that having just found each other, we've been robbed of a fulfilling relationship. It's hard, either way.

    I'm glad SS are being helpful, and also glad that you've found TP. There are people here who understand how you are feeling, and no-one will blame you for having a moan -- we all do from time to time.

    Best wishes,
     
  7. sad nell

    sad nell Registered User

    join the clan

    dear lost boy, I so understand your situation, and since i live in same area would like to offer you any help pratical or emotional help, been wakling this path 5 years have some ways of helping you cope ( not that i do alot of the time) accept any help offered, i now have 2 sitters which really gives both me and trev a break from each other which we all need , no matter how much we love our partners who are struggling wuth this horrendous illness. My best way of coping is humour, but when Trev in one of his bad moods which seems to be more or less each day now ,dosnt always surface. My ss and cpn are both excellent sSo think perhaps we are luckier in this area, as are consultants but you have tosay what help you need and do not do as i did and think i was super woman, because i nearly becamelost the plot, but now with some help i can just about cope and hope you will too. love to both you and your wife Pam & Trev
     
  8. jane@hotmail

    jane@hotmail Registered User

    Mar 13, 2008
    49
    Bedfordshire
    #8 jane@hotmail, Apr 8, 2008
    Last edited: Apr 8, 2008
    Hi,,
    You have a sad story to tell and I can't imagine how you must feel. My story is different to yours because I care for my mum. I think you've had some great advice from the guys in a similiar situation as yourself, and I hope it's helped you feel that you're not alone and you can always rely on TP for advice or a shoulder to cry on!
    I just wanted to suggest that you phone the family and let them know that you're getting support now because you're struggling to cope ALONE! I think people tend to not get involved incase it looks like they're taking over or poking their nose in....If from the outside it looks like you're coping reasonably well, then you have to make sure that they know that's not the case. There's no shame in admitting you're human and you may be pleasantly surprised by the response! You have nothing to lose, but a lot to gain, so find some time and give them a call as soon as you can........Sometimes we think that poeple are aware of our struggle, but if you're just 'getting on with it'. They may not realize how bad it is for you. You may need to spell it out for them and be very honest.

    Jane
     
  9. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Just wanted to say welcome glad you have found us. There is always someone here to listen, and support you so post as often as you need to. I don't know what I would have done without this site.

    Linda x
     
  10. Netti Brown

    Netti Brown Registered User

    Apr 5, 2008
    13
    Derbyshire
    Hello Lostboy!

    Hi - I too am new to this forum. A very warm welcome to you! I too am in my 40s and I look after my father who has Alzheimers. I have no family in the UK to assist, so know what you are going through.

    Others in this forum are in similar positions, and it seems to be a great place to vent, get advice, and just share your thoughts.

    Wishing you well
    Netti
     
  11. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    #11 andrear, Apr 8, 2008
    Last edited: Apr 8, 2008
    Carer Support Group

    HI lost boy
    I've only just got to know that there are support groups for carers who are in a younger age bracket i.e. you. Will PM you with details.
    The staff are very friendly and indeed very supportive and informative and you will find out groups that may be of use to yourself.
    Good luck
    Andrea
     
  12. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hello Lost Boy

    Welcome but sorry as well. Your feelings are not unusual. I think as carers we all feel resentful, angry, isolated, exhausted and confused. It's normal. If there is normal with this illness.

    It's good that you are getting some help from Social Services. Did this include a Carer's Assessment for you? If not, please do ask for one.

    I've been visiting this site for a while now and it's been an invaluable place to come and chat with people who really understand what it's like to care for someone with dementia in whatever form it takes. Over time, I've learnt a lot, cried a lot and had a laugh (yes, it can happen!). Please do come here whenever you feel like it and sound us out. I think we all help to keep each other going.

    From another forty-something, who struggles to cope with it all at times!

    Take care x
     
  13. Lost boy

    Lost boy Registered User

    Apr 8, 2008
    2
    Bradford
    Thankyou

    :):) Hello everyone!!

    I would just like to thank you all for the support and understanding that no one has really given me so far. I felt really alone but, now feel as if I do count thanks to all your messages of support. Thankyou
     

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