Long Goodbye

Discussion in 'Middle - later stages of dementia' started by tryingtosmile, Mar 13, 2018.

  1. tryingtosmile

    tryingtosmile New member

    Mar 13, 2018
    Hi ..first time..I am living in a long goodbye situation. My hubby has been in the home for 15 months now. I also go 4 times a week. I live close by. He is only 70 , he had a brain injury at 41. They tell me that his dementia doesn't follow any rules because of the brain injury. He has almost died 4 times since summer. I have sit by his bed and felt him dying and some how he manages to keep coming back from the edge. At first I thought I was lonely in the house but after awhile I realized I am going through the 7 stages of grief. I feel all kinds of strange feelings. When people die at the home, it is like I am jealous, I think they don't have to suffer any more. I try not to think about my life , or that I live around my routine of going to the nursing home. My husband is very bad, in late stage , he is in a wheelchair and diapers , he can't see much or use his hands, or words when he speaks. He lost his ability to understand conversations and answer me back more then 2 years ago. That was really when I noticed I no longer had him and started missing him even while he was still at home with me. I live with 100's of memories. They are my company. I do not like crying , I would rather be happy, but the more I try to happy, the sadder I feel. I am looking for things I can read or do that will help me deal with this long good bye. How do you get over losing someone when they are still there?
  2. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    Welcome to TP. I can’t really offer any thing, but this reply will bump you up again and someone will be able to offer support.
  3. Carmar

    Carmar Registered User

    Feb 2, 2016
    @tryingtosmile, what a terribly sad and painful situation for you and your darling hubby to be living through. Perhaps, even though you seem to be holding it back, it might help you to have a seriously good cry. I know it won't change your situation but it may just let out some of the terrible pain you have inside and be a form of release for you even if just for a little while. Anticipatory Grief and Ambiguous Grief as they are called are excruciatingly painful because there is no let up from it. The person is still alive and still needs tending but they are no longer the person you know and it can feel like a death before a death. I don't think there are any answers as to how to get over these feelings as they are so personal to every individual. You must do whatever you need to do for yourself to help you through and try to be kind to yourself. Do you have family or friends you could talk to about how you are feeling? Perhaps a dementia carers group nearby? Sometimes just saying the words out loud relieves the weight of them a tiny bit. Posting on here is the next best thing to talking to someone in person if you have no-one close you feel you can tell. So many of us here have felt and are still feeling the pain you describe and it does help to know that you are not alone. There will always be someone ready to lend a listening ear on Talking Point. Come here whenever you need to and you will be welcomed.
    There is a factsheet from the Alzheimer's Society about Grief, bereavement and loss that may help you just a little. Here is the link to it:-
  4. C14

    C14 Registered User

    Mar 1, 2013
    How do you get over losing someone when they are still there?
    I have asked myself that question so many times!
    It is my father who has vascular dementia, he has been in a care home for nearly 2yrs now as he became aggressive towards mum, and I became concerned for her safety. They were married for 65yrs last March, and she actually moved into the home two months after him because they couldnt live without each other. I felt it would be ok because there was always someone there for her if he kicked off, and they knew when she needed her own space.
    I have been through so many emotions, similar to the ones you describe. When I slept on their settee the week before he went into the home I would listen for his movement in his bedroom in the morning, and be upset/angry that he was still alive and we would have to deal with whatever was coming. I wanted an early escape from the disease as I have already gone through it with my MIL. She is also in a nursing home with late stage alzheimers, bedridden, double incontinent, mostly withdrawn but comes out of herself occasionally, and we have been called a few times thinking it was 'the end', but she bounces back!
    So many times I have wished both of them could be released from their 'prisons', and find myself planning the funerals, imagining life without them, even planning holidays and a future free from worry, anxiety, guilt and anticipation of the 'final moments'. Then I visit dad, and we make eye contact and we listen to Al Jolson on his little tape recorder, I sing to him and sometimes he is not impressed but on the whole he enjoys it and very occasionally he joins in!
    He is still my dad, and he is still in there whatever form he takes, however he manages to communicate (or not), at some level there is a connection I just have to be open to it.
    To go back to the original question, I don't think we ever get over losing someone, whether they are still here or not. I was looking on the Cruse Bereavement website the other day, mum died last September and I am just beginning to feel the effects now, as my primary concern was dad and how he was managing his grief. Dementia has given him a safety cushion, as he does not remember most of the time. They had a video from the BBC, about 'Why grief is not something you have to get over'. It helped me to understand grief a little more and how to deal with it.
    Grief is a process, whether the person is there in body or in spirit, it's how you deal with it that is the key. I also have read the book 'Letting go of the person you used to be' by Lama Surya Das. This book has supported me through a few tough situations regarding loss and change, two things we do not take very kindly to a humans!
    I hope this post helps, it is also my first, even though I have been a member for quite a while xx

  5. Carmar

    Carmar Registered User

    Feb 2, 2016
    I think you have put that beautifully @C14 and I am so sorry to hear about your Dad and your Mother in Law. A belated welcome to Talking Point.
  6. father ted

    father ted Registered User

    Aug 16, 2010
    Tryingtosmile, I have just read your post and felt moved to reply.

    I am not in your situation but can only imagine the strength and fortitude you have had to show for so many years especially as you say your husband's brain injury occurred when he was a much younger man.
    You do not say if you have children or other family nearby to support you. If you do this must surely be some comfort to you.

    You say you try and be happy but this makes you feel worse. I have had trials and tribulations too and when I have tried to shake myself out of feeling so low and down those closest to me will remind me that I have every right to feel that way because I am dealing with an awful lot of responsibility and worry and it can't be minimised and I now say that to you too. You are strong and are coping with so much. And the 'strange feelings' you have are not strange at all for someone coping with such sadness. When you witness someone you love decline to the point where there is little or no quality of life it is perfectly natural to want their suffering to end and being honest yours too. You have 100's of memories with the man you love. Hold onto those now and for the future. Don't underplay the great job you have done and continue to do be kind to yourself. Post on here how you are doing. Someone is always listening.
  7. C14

    C14 Registered User

    Mar 1, 2013
    Thank you Carmar, and thanks for the posting the factsheet, I will read that with interest myself x
  8. Pollylongsocks

    Pollylongsocks New member

    Mar 14, 2018
    I feel you said goodbye to the man you knew and loved a long time ago and now you visit with no hope but as a dutiful, loving wife
    Starting to begin a new life now would make you feel disrespectful and guilty, however starting to accept a single exsistance and being kind to your self doing things you always wanted to do may help to rebuild your confidence and self esteem and bring you some happiness and strength to cope with the ulrtimate final goodbye
  9. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    East Midlands
    I can understand how you feel. I feel like I am in some sort of twilight zone with my mum. As her cognitive decline progresses, my mum looks more & more vacant. Sometimes she makes sense & other times she doesn’t.

    Outwardly she sometimes doesn’t look ill at all. However her decline since her diagnosis is shocking & she was ill way before then.
    I do feel she is drifting towards the end stages & I do hope when the end comes that it is quick & pain free.

    She hasn’t led a very happy life - some of it has been self inflicted though & she has caused other people & myself a lot of grief. I guess I have made my peace with the fact that my mum
    will never be the same again.
  10. pamann

    pamann Registered User

    Oct 28, 2013
    Hello tryingtosmile welcome to TP you have come to the right place for advice and support. l am in the same situation as you 3yrs ago my husband went into a CH TP was my lifeline.
    As time goes by it does get easier, we have been married 54yrs, l have wonderful memories of my very happy marriage and a kind and loving man. l visit everday to feed my husband, as he can do nothing now for himself, he is in a very good CH, l help with the activies, also help with feeding other residents. Maybe you could try to get involved with the CH so you are closer to your husband, some days my husband does not recognise me, but it makes me feel good to be with him. Do you have any interests, hobbies or belonging to clubs, you need to keep yourself busy, it helps to keep you from feeling upset and lonely. l belong to 3 bowling clubs, l also sing in a choir, it is very uplifting. do you have friends and family that give you support, l do hope you can do something to make life a little happier for you, keep posting there will always be someone to help you. Pamann xx

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