1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. twinone

    twinone Registered User

    May 19, 2008
    Hi i am new to this site and feel a bit strange telling people how i feel. I lost my husband and soulmate in October 07, he was 61 years old and I was aged 54 (now 55).
    I still find it so hard to beleive that he is not here and i will never see him again.
    My husband only started to deteriorate July 07 and had not lost his memory. He started to be aggressive towards me a couple of times and was taken to hospital and transferred to a neurological unit where tests where done on his brain. I was told he only had a couple of months left to live and brought him home to care for him myself.
    He was a lovely kind man who was very sociable and had many friends but for the previous 3 years he had been anxious and I was told he was suffering from a b12 deficiency. I May 2007 he saw his neurologist and he sent him to a cerebal function unit for tests to make sure (he said he was 99% sure it was psycological) they diagnosed a psuedo dementia. ( how wrong could they be). This gave us much hope that he would get better and could then get on with our lives.
    I am still in shock that he is not here and dont know how to deal with it. I am back at work and have a twin sister and a son who both contact me daily. I also have 2 very good friends who invite me for meals at there houses. My husbands best friend takes me to his home every 2 weeks for a couple of glasses of wine with him and his wife who are both very supportive.
    I feel that i am living someone else's life and just want my own life back. Does anyone else feel this way?
    Sorry its such a long message but couldnt stop once I got started.
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Twinone.

    It must have been a severe shock for you to lose your husband so suddenly. His deterioration was so rapid, you didn't have time to come to terms with things. It's going to take you a while before you begin to feel 'normal' again, and for you it will be a new 'normality'.

    My husband is in a nursing home with end-stage dementia, and I don't know how long it will be before I lose him. But my first husband died suddenly, so I do know what you are going through.

    You are lucky to have such a supportive family and group of friends.

    I'm not quite sure what you mean by 'wanting your own life back'.

    Do you perhaps feel that the time has come for you to branch out on your own and find your own feet? If that is so, then that is very positive.

    Although it's kind of your friends to invite you round, it's not always healthy to make them the entire focus of your life, it's a constant reminder that your husband is no longer with you. I know it's sometimes difficult not to feel like the 'spare part', although I'm quite sure no-one wants you to feel that way.

    Perhaps you could talk to your twin sister about this? She's probably the person most likely to understand you.

    Perhaps you could try joining an evening class, or a theatre club, something you're interested in, and would meet people with similar interests.

    I'm sorry if I've misunderstood your post, and I hope I haven't caused offence. But I know that for me there came a time when I had to start thinking about making a new life for myself, and I suspect you may have reached that point.

    Please post again, and don't be afraid to tell me if I've got it all wrong!:eek:
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Twinone

    I`m not surprised you are still in a state of shock, following a false diagnosis and then such a rapid deterioration.

    I can`t really offer any advice, only to tell you to go with your heart. There is no time scale for grief, nor is there a right or wrong way to deal with it.

    There are many on Talking Point [TP] in different stages of grief and I hope they will offer you support which may help.

    Please keep posting. The support system here is excellent and although no-one really knows how you are feeling we all understand what you`ve suffered.

    Take care xx
  4. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    Hello Twinone

    This does sound like shock and at some time, when you are ready, you will step back into your life. However, it will be a life without your husband - not the life you had together. It seems the mis-diagnosis of your husband has robbed you of precious time together with your husband and the time to come to terms with the fact that you wouldn't be having a long future together. This is terrible painful, frightening and life changing. You hadn't planned a future without your husband; you hadn't planned to be in the position that you are now.

    I remember just 3 years ago, I took my mum to Accident and Emergency at her local hospital because she was having dreadful pains in her back. Her own GP suggested taking her there. They were taking her in a wheelchair for an X-ray and I saw her slump in the wheelchair. I ran towards her and she had died. You can imagine how unbelievable that was. She only had a bad back and was going for an X-ray!!

    I am really glad that you found an outlet by writing on Talking Point and I can only hope that you find it a source of help on the journey towards your healing.

    Love and best wishes

  5. twinone

    twinone Registered User

    May 19, 2008
    Thak you for taking the trouble to reply. I am finding it very hard to cope with losing my husband in this terrible way, I dont think there could be a more horrible way to end your life. When I said I wanted my life back I meant my old life with my husband. I know that it cant happen but still wish he had never got this awful illness. I am trying to start living again but some days dont want to do anything at all, but hopefully with time this will change.
    I really understand what you have previously gone through and what you are going through now with your husband, it is very hard to except and deal with and i hope that you also have support from family and friends.
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Thank you, twinone. I misread your post.

    All I can say is, give it time.

    You know you're not going to get your old life back. But your bereavement is still very fresh. Allow yourself to grieve. Don't feel that you have to keep up with the social life if you don't feel like it. Perhaps you are putting too much pressure on yourself to keep up the facade?

    Only you know how you feel. Perhaps you need to give yourself a quiet time to sit down and remember your husband, think of what you've lost, and try to come to terms with it.

    You've gone back to work, and are keeping up with your friends and family. Are you pushing yourself too hard?

    It will get better, I promise you. But burying your grief won't help. Please keep talking to us, it will help you, and it will help us to get to know you.

    All the best,

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