1. Snowedunder

    Snowedunder Registered User

    Jun 13, 2013
    27
    West Country
    My dear OH has been in a care home for eleven months and I visit him almost every day for a couple of hours. I do this because, even though he often doesn't know me, it's the only care I can give him - my one-to-one undivided attention. I have loved him for fifty-three years and want to grab any brief moments of communication, some imagined and some real. He is severely mentally impaired but still fairly mobile - and so young compared with the majority of residents.
    My family, who live too far away to visit much, encourage me to see him less frequently and to do other things - to make a life without him but I don't have the will to do this.
    I still meet friends for coffee but I don't enjoy life anymore. The things which gave me pleasure were mostly shared with him and I can't bear to do them without him. I used to make beautiful things but I feel too empty to be creative and I seem to cry an awful lot. When I look in the mirror I see a sad old lady, not the youthful person who was there a few years ago. It feels like one long bereavement.
    I'm sorry this is so long and so full of self-pity but I just wanted to tell somebody how I feel and I know people on TP will understand.
     
  2. Essie

    Essie Registered User

    Feb 11, 2015
    566
    We do understand Snowedunder, we do! And it is a form of bereavement that you're feeling now, for the loss of the man your husband was before illness and the loss of the life you had yet to live together.

    This is such a cruel disease. Don't ask too much of yourself all at once, as he is now (from what you write) settled and being cared for in a home you will find your strength and, capacity, for life will return but it has to be at your pace and it your own way - don't feel pressured to do things just because others say you should. If you like to spend everyday visiting your husband then do it but perhaps not to the complete exclusion of other things but find your own balance that you're happy with.

    If you used to be creative could you take something in to do with you at the home whilst you're with your husband? Pop the telly on (or whatever your preference is) and knit or paint or sew, you don't have to be having direct interaction with your husband all the time, it's nice just to be together and with help on hand hopefully you can be more relaxed and regain some pleasant time rather than just being so busy (and so tired) from the daily rigmarole of caring.

    And the tears, well that's just part of the toll this horrible illness inflicts, you are not "full of self pity" you just have feelings, like all of us and they are battered and bashed. Be gentle with yourself, do what feels right for you but try not to completely exclude time with others, a morning/afternoon doing something else will give you something to talk about with your husband and it is good to have a bit of change of scene even if only an hour or two once a week.

    And do keep posting on here, it's good to get to things off your chest, just writing it down helps and there's always understanding and support which is so vital.

    (((((Big hugs)))))))
     
  3. Snowedunder

    Snowedunder Registered User

    Jun 13, 2013
    27
    West Country
    Thank you so much, Essie! I think I just needed the big hugs from someone who understands. I have really kind friends but I just can't let them know how I really feel. xx
     
  4. WIFE

    WIFE Registered User

    May 23, 2014
    857
    WEST SUSSEX
    Snowedunder - how I feel your sadness and loss. I spent the best part of last year visiting my husband every day in a NH. He did not know who I was - just a familiar face he felt comfortable with most of the time. I too felt it was the only way I could stay close to him and after a short time took over his morning personal care because I wanted to do it all for him. I refused to listen to anyone who tried to tell me to make a new life for myself - how? - not to visit so often - why not? - to think of myself and my needs - after 45 years my need was to be with my husband come what may for as long as possible every day - usually 3 - 5 hours though thankfully he was only a 10 - 15 minute drive away. I usually stayed to ensure he ate his lunch and then came home to my poor bewildered little dog - gave her some attention and then took myself to bed. I moved into the NH for the last six days of his life and now find the days are very long and unstructured without the daily visit. Do not listen to other people or family who mean kindly but are not experiencing the pain, confusion, sadness and heartbreak you are. Be strong and follow your heart and the need to be with your man.
    Loving thoughts WIFE
     
  5. Bree

    Bree Registered User

    Oct 16, 2013
    241
    It's heart breaking thinking of your loneliness, but we are here for you. Some of us have suffered or are suffering the things you are experiencing. Some have to face it at a later stage. Family and friends are well meaning, but maybe fail to understand your feelings at this present time, as your husband is your life time partner, soul mate if you will.

    You are his strength now, still his wife, you're there for him now and he needs you as never before. I do hope that you experience some peace from your visits to him, we all think at times that maybe our loved one isn't aware that we're there, but just maybe they are.

    I know from experience that lovely memories can be painful ones, times past, but no-one can take them away. Take your time in all things, take care of yourself, in time hopefully, you will see a little light at the end of the tunnel, it is there. Sending hugs too.
     
  6. Snowedunder

    Snowedunder Registered User

    Jun 13, 2013
    27
    West Country
    Oh Wife! I am so sorry to hear of your empty days now that your dear husband is no longer here for you to visit. I'm glad you had those six days with him and all those hours before that but what a toll it has taken on you. I hope that you will gradually be able to recover something of yourself, even if that's not what you're looking for at the moment. Hugs for you.
     
  7. Snowedunder

    Snowedunder Registered User

    Jun 13, 2013
    27
    West Country
    Thank you Bree. You are so right about the lovely memories being painful - it's those that cause the tears to flow, knowing that that part of our life together is over. I know we've been fortunate to have shared so much and now I just want to show him love in the time he has left. Hugs to you too.
     
  8. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    No need to apologise, your post is not too long and not full of self-pity. You are saying how it is and many of us can deeply relate to what you write. We truly do understand. It is indeed one long bereavement.

    We have been married for 56 years. My husband has had dementia for 12 years and has been in a care home almost 4 years. He had been in hospitals 6 months after a fall and I visited him daily most weeks and seldom less than 5 days a week. Soon after he went into the care home my elder daughter who lives a long distance away said there was now no need to visit him more than once a week. She meant well, and was thinking about my welfare, but she did not understand….

    Much of what you wrote could be me writing. Unfortunately my personal situation has changed due to health and I do not manage to spend all the time with my husband that I long to do. HIs dementia has considerably progressed. Those times together are even more precious, and when I do manage to be with my husband I savour every moment. Even when he is lost in the dementia fog. Just being there, holding his hand, be it in silence, not only comforts me but still comforts him. We know our men. When there are moments of eye contact I see it in his eyes. I feel it when his hand tightens in mine.

    Now my post is too long……

    As WIFE has said, although family and friends mean well they are not personally experiencing all that you are.

    Keep posting….it can help you by writing about it, and knowing that many here truly do understand. So few people do understand unless they also have a close relative with this destructive disease.

    Love
    Loo xxx
     
  9. Snowedunder

    Snowedunder Registered User

    Jun 13, 2013
    27
    West Country
    Thank you Loopiloo for your kind words. I feel so lucky to be able to visit my husband most days and I'm so sorry to hear that your health is not good and that you are now unable to visit your man so frequently. I'm glad for you that you still have those moments of recognition - they are precious indeed.

    Big hugs xx
     
  10. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    I totally understand your wish to visit so often, I visit my mother most days for 2/3 hours. I accept that she has probably forgotten I've been there 5 minutes after I've left but I do believe that giving loving one to one care must improve a loved one's quality of life.

    I'm sorry that your husband doesn't always know who you are, but I hope that he does give you the feeling that he enjoys your visits.

    It's great that you still meet friends for coffee, so important to do something to distract you from the great sadness. Essie's idea of working on something beautiful while visiting your husband sounds good - if your husband doesn't talk much it will give you something to chat to him about that he can watch.

    Please don't feel pressurised by your family to do things that you are not ready to do. They are hopefully just trying to be kind and encouraging and are not trying to make you feel as if you somehow could or should love and care for your husband less.

    Hope you feel a little better soon and that you can find something to bring a bit more joy back into your life. Take care.
     
  11. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    #11 truth24, Mar 25, 2015
    Last edited: Mar 25, 2015
    As the other posters have said, snowed under, you must do what's right for you. I visit my husband every other day. Would go every day but it's nearly 40 miles round trip and petrol bill is too high to go every day. I will probably cut down a little if he gets to the stage that he doesn't recognise me but, as he is still the centre of my life afte 51 years of marriage, I have a need to be with him even if it is more for me than him these days. He is content and well cared for and is more affectionate with his carers than with me now but I try to be happy that it is so.

    My son and daughter live about an hour and a half away from the CH in different directions so visit him very rarely. I keep them updated but neither have suggested I visit less frequently. A couple of friends occasionally visit with me and my grandchildren sometimes take my greats to visit but everyone is spread out these days so it is a special journey for every one.

    Like you and others, I isolated myself for a while grieving for the man I have lost but have made a conscious effort now to 'rejoin' society. It is still an effort and easier to be by myself but I am making myself do it and enjoy the renewed friendship with those who care. It has been nearly 9 months now and, as you and others, am still looking for my purpose in life instead of drifting aimlessly but, although life will never be the same again, I do hope to find some sort of contentment in due course. Thinking of you in your sadness.
     
  12. Snowedunder

    Snowedunder Registered User

    Jun 13, 2013
    27
    West Country
    Hi Gigglemore - what a glorious name! Thank you for your response and your suggestions. I know my family are trying to make sure I take care of myself - my daughter who lives 200 miles away said recently that she had feared that she would lose me too when I was still looking after her father full time.
    I'm glad you are able to visit your mother most days and I'm sure she loves having you there.
    Thank you again.
     
  13. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,486
    Female
    England
    I too visit daily and have been told many times that I should go less. I lived with my husband for 46 years before he went into care and saw him every day. Why should I not see him every day just because he now lives elsewhere?

    I have the occasional day off, things have to be done and I have recently taken a weeks holiday with our Son and his family. I have decided that short holidays are going to be taken or the odd day but I visit, not out of duty but because I want to. He may not know who I am ( nearly five years since he lost me as his wife) but I know who he is and I like to be involved with his care. Most days I give him his lunch and can often found reorganising his wardrobe. He was particular about having clothes hanging in order so I swap them around.

    We all must do what we want to do, we have been through so much and have more to come.

    I am having a day off today to finish painting the bathroom and think I should get back to it now, just another job to do:):)
     
  14. mj10867

    mj10867 Registered User

    Nov 20, 2012
    18
    God I understand all this Snowedunder. I feel everything you are feeling. Only difference is it's my Mum, she's only 67, taken away from me a year ago. She's in a carehome, she knows she's there but she's forgetting me. I feel like she's left me suddenly although it happened gradually over 3 years really. I hate the carehome, the care shes receiving, and the carers, the way my whole family have fallen apart and unable to talk to each other anymore. I grieve for her every day, I cry every day and I work to block it out and no one really understands how it feels because she's still alive. I should be happy for that but I'm not. I would rather she die and be taken away from the miserable life she is living. I want to take her home and show her where she used to live, but no, everyone interferes. My poor Dad is now on his own with his own health problems. I cant help him, I cant even visit him as Mum is there, all around, still in the house. Ive ripped up photos or hidden them as I cant look at the happy memories we shared. I am trying to get through this but do not seem to be able to get through it on my own. How do I move on, how do we all move on?
     
  15. Trisha4

    Trisha4 Registered User

    Jan 16, 2014
    2,442
    Yorkshire
    Poor you. You are in a pickle. I think you probably need someone to help you with all those emotions. Can you speak to your GP? You need to stay well if you are to help both your parents. Keep posting. We care about you on here and we can listen although we can't give practical help. Hugs from me x


    Sent from my iPad using Talking Point
     
  16. WIFE

    WIFE Registered User

    May 23, 2014
    857
    WEST SUSSEX
    I sincerely feel for everyone who has a loved one in a Care/Nursing Home. To Snowedunder - look after yourself and your needs as well as those of your husband.
    mj10867 - please see your G.P. - sounds to me as though you are suffering from stress and depression caused by the early dementia of your Mother. Sorry to learn that it is causing so much heartbreak within the family. You must try to visit your Dad - he needs you more than anything now that your Mother is in care. You don't like to see her being looked after by "strangers" - I know that feeling from my own experience but as long as she is clean, fed and watered and kept safe you can provide stimulation by visiting her even if she does not always recognise you. Hard times but don't give up on your parents - no-one chooses dementia.
    Truth - you are a tower of strength for Fred and I am sure we all admire your fortitude and love for him.
    To everyone else I send loving thoughts for strength to face the future whatever it may turn out to be. WIFE
     
  17. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    Thanks WIFE. Just following in your footsteps. xx
     
  18. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    Thanks WIFE for your words to all of us with a husband, wife, parent or another loved one in a Care/Nursing Home. Very much appreciated.

    Loo xx
     
  19. Silver Lining

    Silver Lining Registered User

    Nov 20, 2013
    224
    #19 Silver Lining, Mar 28, 2015
    Last edited: Mar 28, 2015
    You all moved me to tears.............

    My OH is in a Care Home/Nursing care he is there because he has complex medical health needs and Alzheimers and has a continuing DoLs. He is 69 in May and has been there since January 2015.

    I would love to feel that I want to visit every day but I never know if he will be in an aggressive mood or the other end of the spectrum and kind and loving. I am visiting every other day but cancelled a visit a couple of days ago when he was shouting at me down the phone. I just couldn't face walking in to it. Of course he didn't remember it the next day. I too do not feel up to making a life for myself and I am quite content to be in our house making plans for the jobs here that never got done, even that has sadness attached to it.

    I did feel very moved by all your comments, we have been married for 48 years, not without the ups and downs I might add.

    Hugs to you all - Silver Lining.
     

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