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. Sleepy Head

    Sleepy Head Registered User

    Jun 11, 2014
    Hello - I'm new to TPF. My husband has had vascular dementia and Alzheimers for about eight years and has needed my constant care for the last three. This was exhausting but I managed it until he started to refuse my help and at the same time stopped taking his medication so I had to hide it in food and then worried that he might not eat it all. He became incontinent and would wear the same clothes day and night for days on end and he became aggressive if I tried to help him change them. He refused to leave the house and became very destructive so I couldn't leave him alone. I tried getting carers in but he wouldn't let them help him either. I'd been thinking I could manage to care for him alone for another few years but in the end I took the doctor's advice and found a CH for him.
    I just feel so bad about leaving him for other people to care for him. He's always been a gentle and considerate man and I can't help thinking that he would have tried harder if the roles were reversed. We've been married over fifty years and now I just ache to have him here with me. I visit him almost every day and sometimes he seems to recognise me for a moment but most of the time he's either asleep or sits with his eyes closed. The CH has lots of activities but he doesn't take part. The doctor says he thinks he's having lots of TIA's. He can't communicate and he doesn't understand what people say to him. He has hallucinations and his vision is poor and all I want to do is to hold him and comfort him. I know I've been losing him for a long time but this seems like a huge step away. I feel as if I've lost my husband but he's still partly living. I've certainly lost my life-time companion and it's so painful. All my friends think I must be so relieved to have him cared for but when I'm alone I just can't stop crying. I can't explain to them how I feel.
    Sorry this is so long and muddled - just feeling really sorry for him and for myself.
  2. Neph

    Neph Registered User

    Jan 27, 2014
    I know how hard it was for me to put my mum in a care home, so I can't even imagine what it is like for you to put your husband in one. Just take heart that he is being looked after and you can now make sure you look after yourself and remember who he was, not who he is. It takes the pressure off, but it doesn't remove the guilt. I am sure that if the rolls were reversed he would have done the same for you.

    Sending you a big hug, it's a big void to fill when all the hours spent caring are now spent thinking, don't beat yourself up with 'what if's' try and take what positives you can and don't be too hard on yourself.

    Take each day as it comes they do get easier. x
  3. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    I know exactly how you feel as I felt just the same.
    Just remember that you are still caring for your husband even though he is not living with you.
    I promise you that you will be needed. You know your husband and all his likes and dislikes. The carers can be guided by you.
    It is a different caring role but still a vitally important one.

    We had our Golden wedding 3 months after my husband entered a nursing home, 3 years ago today. Friends don't realise that the attachment and the responsibility doesn't leave you just because others are carrying out the daily caring tasks.
    Caring means so much more.
    Just take a day at a time and you will get there. Very best wishes and welcome to TP.
    It's a wonderfully supportive place to be. :)
  4. lizzybean

    lizzybean Registered User

    Feb 3, 2014
    Oh Sleepy Head, I do feel for you. Friends do not have the faintest idea what 'caring' really means unless they have done it. I am not yet in the same position as you & I am caring for my MIL rather than a partner but it consumes so much of your life that when it goes there is a huge gap left.
    As others have said you are still caring just not as hands on, you are also grieving for the man your husband once was & because he is not in your home any more. The usual mantra applies, take each day as it comes, enjoy the time with him as much as you can & start to think about yourself. Take it easy & take care of you now.
  5. Early riser

    Early riser Registered User

    Mar 16, 2014
    It takes a long time to adjust after caring for someone 24/7.

    At first I used to wander from room to room wondering how to fill the long empty hours.
    There was no longer the endless washing and the hours spent getting my husband up, washed, dressed and breakfasted, now I was free to do things for me, but I didn't want that I wanted my husband back.

    I admit 2 years down the line I still have some sleepless nights worrying about him, but I have something very precious and that is quality time with him, just to sit with him, hold his hand, wheel him around the grounds. In a strange way the love I feel for my husband now is much stronger than when I was caring for him.

    Those who have never suffered this dreadful experience have no idea how we feel, my friends wanted me to move on and go back to work!

    Listen to your new friends on TP, they will help and guide you.

    Best wishes.
  6. gerry200

    gerry200 Registered User

    Jan 19, 2014
    I'm so sorry Sleepyhead and no, people who haven't experienced this just won't understand. I've watched many dealing with having to put loved ones into a care home and the feelings of loss, guilt and purposeless are bewildering. It is ok to cry - just cry as much as you need to. You have been under great stress for years and now you are having to adjust to a different stress and crying will help you as it releases tension. If you feel a little overwhelmed, then give yourself a time limit to cry and really let go in that time - it gives you a feeling of control. It will get better. People sympathizing or being kind, completely undo me.

    Lots of hugs

  7. copsham

    copsham Registered User

    Oct 11, 2012
    Dear, dear sleepyhead,
    I feel so much for you, even though my "dementia journey" is very different from yours. I remember someone describing it as several bereavements in a row, acknowledging the loss when you have a diagnosis and loss when they go into a care home, sounds like an understatement but true..

    Don't beat yourself up thinking that he would have looked after you longer, you did all that you could humanely do ... and more ... and more. It is an emotionally painful way for such a long marriage to develop in to.

    A thought - might be "off the wall" - could you make a sort of biography/auto biography with writing and photo's, a sort of "This is your life". THis could be shared with future generations. Ignore this thought if it is inappropriate!

    I am glad you found Talking Point. Keep posting as several others are in similar circumstances as you!
  8. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Hi Sleepyhead

    As others have said people won't fully understand unless they have been through it. My Husband has been in a care home for a year now-I only did seven years caring at home-so you beat me:eek::)

    I expect that every poster on here cries tears of grief and loss-so you are in great company.

    Please continue to post whenever you feel sad-or for anything else.

    Welcome to TP

    Take care

    Lyn T
  9. Rathbone

    Rathbone Registered User

    May 17, 2014
    West Sussex
    Oh sleepy head I am so sorry and I truly understand. This cruel disease leaves us all feeling so powerless. I really believe that at some subtle level he knows you are there and sends you comfort as much as you want to comfort him. Love and peace to you both. X Shelagh:)
  10. Sleepy Head

    Sleepy Head Registered User

    Jun 11, 2014
    Thank you for your kindness

    Thank you all for responding to my posting today. What extraordinarily kind and compassionate people you are. I knew I wouldn't be the only one to feel the way I do but it has helped a lot to read the experiences and encouragement of other people. You're so right about the caring not ending just because he's in a CH. I don't know if I'm up to putting together an autobiography yet but it seems a wonderful idea. xx

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