1. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    Anticipatory Grief:
    Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives. It can start as soon as we become aware that death is a likelihood. Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve.
    Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression. These complicated emotions are often coupled with the exhaustion that comes with being a caregiver or the stress of being left alone when someone goes to war or is battling addiction. We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread. More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses. This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.
    When we know a death is imminent our bodies are often in a state of hyper-alertness – we panic whenever the phone rings, an ambulance must be called, or when our loved one deteriorates. This can become mentally and physically exhausting. The same is true of watching a loved one suffer, which is almost always part of a prolonged illness. Caring for them as they suffer takes an emotional toll on us. These things (and others) can contribute to a sense of relief when the death eventually comes, and a guilt that can come with that relief. These feelings are common and totally normal when someone has experienced an anticipated death. And yet we feel guilty for this relief, thinking it diminishes our love for the person. It doesn’t, of course, but this relief can be a confusing feeling. We sometimes need to consciously remind ourselves that the relief does not change the deep love we had for the person, rather it is a natural reaction to the illness.
    There have been numerous studies showing that anticipatory grief can reduce the symptoms of grief after a death but, as always with grief, there are no rules. There will be times that anticipatory grief may reduce the intensity of grief following a loss, then there are many times that the grief following a death is not impacted at all. What is important to keep in mind is that if you are grieving with less intensity or for shorter duration than other losses because of the anticipatory grief you experienced before the death, that is totally normal! On the flip side, if you do not feel your grief is diminished despite it being an anticipated death, that is totally normal too! There is no formula for how an anticipated loss will impact us because we all grieve differently.

    I am the daughter and my Mom has been ill with congestive heart failure, kidney problems, and more, and finally, early dementia. This has been going on for over 8 years and I thought all the above feelings were abnormal and I felt guilt. Now I know better and I hope that this will be of help to some of you. I firmly believe that the stronger the love, the greater the pain.

    Sorry for overly long post.
  2. Bod

    Bod Registered User

    Aug 30, 2013
    I feel that the death after a long and difficult illness is a blessed relief, and so much easier to deal with.
    A sudden unexpected death, is so much harder to comprehend, and deal with.

    Experienced both.

  3. Slugsta

    Slugsta Registered User

    My MIL was terminally ill for several months. As she declined my husband grieved. When MIL left us hubby was relatively unmoved, he had already done his grieving.

    Everyone is different in how they react, there is no one thing that is right (or wrong).
  4. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    I was told that Pete was probably approaching the end of his life on 18/05/2014-I was devastated. A few months later I was told as well as bipolar and Alzheimer's he had Parkinson's and prostate cancer-my devastation deepened. He finally passed on 09/12/14-it was a traumatic death. I was totally and utterly distraught-you see I thought that I had done most of my grieving. How wrong I was. I held it together until after the funeral (a PM and Xmas delayed it for a month). Then my true grieving began.

    As you say Slugsta, everyone is different.

    Take care

    Lyn T
  5. Slugsta

    Slugsta Registered User

    (((Lyn))) I am so sorry to hear of your loss.
  6. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    Thank you for posting your thoughts, which have helped me a great deal.
  7. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Thank you Slugsta. Every death is sad when the person who leaves is so loved-whether through Dementia, accident or other illness.

    Love to you and your Husband and sorry for your loss.


    Lyn T XX
  8. Slugsta

    Slugsta Registered User

    This feels as if I am talking to myself as I am also a Lyn! :D
  9. AndreaP

    AndreaP Registered User

    We knew dad could not survive his cancer 18 months before he died. It was a long and slow progression and when he did finally pass it was something of a relief for our dad and for us. It's hard to watch someone facing their mortality and dad hung on as long as he could. We were so glad his suffering was over and he was ready to die in the end.

    I did not cry when he died, I felt I had done all my grieving beforehand. He had a good life and was very fit right up to those last 18 months. I would have preferred him to go quickly with less suffering but we don't get to choose do we?

    I think love is also about letting go with acceptance and thankfulness for a life well lived.
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    #10 Spamar, Sep 13, 2015
    Last edited: Sep 13, 2015
    Several stages of death because of dementia:
    On diagnosis when you realise you are going to lose that person
    This one is variable, but in my case when they could no longer be left alone
    When they go into a home
    Actual death which may not be due to dementia.

    Depending on what your journey has been, and that everybody is different, varying amounts of grief left at the end.

  11. Emac

    Emac Registered User

    Mar 2, 2013
    Thank You

    Brilliant Post JackieJames. Thank you for posting it! We give ourselves such a hard time when we have a family member with dementia. Whatever we do it is never enough. Whenever we think about our own needs we feel guilty. We judge and blame ourselves the whole long horrible journey...and even at the end we cant accept our right to feel the way we feel and grieve as we want to greive - as if we think there will be a right or wrong way to do it. All of the feelings associated with this journey are all over the place and often qite contradictory. I have not yet lost my Mum, but a we now look at a care home place for her I feel guilt, sorrow and relief all at once! :confused:
  12. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    #12 Lindy50, Sep 13, 2015
    Last edited: Sep 14, 2015
    I agree, a very helpful post, JackieJames :)

    Like Spamar, I think I am grieving in stages. I have just placed my mum in a care home.....everyone I know said it would be a huge relief to me. Actually, it isn't. I feel a terrible sense of loss, for the mum I had, and for our whole family structure. I feel a responsibility to take on mum's role as the moral, practical and caring compass of the family, yet I'm not ready, because I am still grieving for her, and for the relationship we had. While at the same time maintaining and building the new relationship we do have......

    Yes, I have to feel relieved that she is relatively safe and well cared for....yet I don't know how to accept that I couldn't look after her when she needed me.

    Then I feel selfish for even having these thoughts.....and so it goes on.

    Anticipatory grief indeed. It is hitting me almost as hard as the grief I felt after my father died.

    Lindy xx
  13. SitsThere

    SitsThere Registered User

    Jan 7, 2013
    Lindy50, you have described my feelings exactly. Mum will soon complete a whole year in residential care. We will complete the sale of her house tomorrow. We've already done all the really hard things, and now mum is settled, seems very contented, and it should all be a huge relief. Instead, there is this looming sense of loss, and of course of much worse to come because this is dementia and it is a terminal illness. I really wish I could just snap out of it and get on with life; then I go to see mum and
    she is just so happy to do little things together that it all feels worthwhile; then after leaving her I get sucked back in to the sadness of it all.
    People of 89 with or without dementia are not going to be with us forever; we all know that. But there's something about knowing too much about what lies ahead for mum that I really struggle to handle.
    Is this 'anticipatory grief' ? I guess it's as good a label as any.

  14. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    Grief may be felt when you gradually lose someone to dementia but at least they are still here in person and you are involved in their lives, even when in a nursing home, and you can help them to make the best of the life they have left which can be of some consolation, no matter how little.

    To me, it is nothing like the absolute grief you feel when you lose that loved person forever.
  15. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Dear Saffie :) I know what you mean about absolute grief, it is just that.....absolute :(

    Personally, I was taken aback by the strength of my feelings when mum went into the CH......grief seemed the only word in any way adequate to describe them. Already, however, a matter of weeks later, I have felt some occasional periods of acceptance, that I doubt I would have felt so soon after a bereavement. Perhaps 'grief' is similar to 'love'....it can be experienced in all kinds of ways, and can be more or less devastating....

    Sending you a hug

    Lindy xx
  16. Emac

    Emac Registered User

    Mar 2, 2013
    Greif and Dementia

    I think this is a long ongoing grieving process with many little bereavements or losses along the way before the final blow. I can identify with the comments re care homes. After the initial shock of mum's diagnosis I was able to focus on enjoying what I had with Mum while I still could. Now the disease has progressed and we are looking for a residential place for her I can honestly say this is the worst I have felt so far as yes, our family is now split and broken forever and mum will go into care and will die in care. I feel really have lost her now.I know there will come some acceptance of this new stage and I will try to make the best of it and adjust to my new relationship with Mum. I think the many little 'deaths' over what can be many many years prolongs the pain and makes this awful illness very hard for everyone to cope with.
  17. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    Thank you Lindy.:)

    Emac, the way I coped when my husband went into a nursing home was to continue to concentrate my time on making his life there as comfortable as I could. His needs were paramount. He was unable to comunicate these so I just hoped I was managing to do that but I was never really sure.

    The nurse and carers became his family and as such, became part of mine too.
    Even to the extent of them having to be nagged by me from time to time!
    I visited daily for most of the years he was there but did eventually did have to miss some days. However, I know that this isn't possible when you have a family to consider so it is different when it is a parent involved.
    What I'm trying to say is that your caring for your mother won't stop because she has to go into a home, it will just be different.
    As for dying there, we all die somewhere and better there with people around caring for her than alone in her own home.

    I can't believe I am actually advocating for a home when I resisited so strongly to my husband going into one but I suppose I can see that it is sometimes a necessity when I never accepted that it was for him!

    As for grief. It is really a multi-faceted concept isn't it with love and guilt, loneliness and regret, all mixed up in it and as such is different for everybody.
  18. hhb

    hhb Registered User

    Apr 5, 2013

    Another angle on this: People in the emotional predicament in which we find ourselves are sometimes described as experiencing 'ambiguous loss'. Degrees of the relationship are 'lost' and must be mourned, but the physical person remains alive and loved. Dr Pauline Boss has written helpfully about learning to deal with this. I would recommend her books - 'Ambiguous Loss' and 'Loving Someone Who Has Dementia'.

  19. rocketscientist

    rocketscientist Registered User

    Jan 8, 2012
    Grief all the time

    My mother is in fairly advanced stages of dementia, in a care home. She lives quite far away, but I visit as much as I can. I used to phone regularly, but this is no longer viable. It seems like a very long time since we ever had a "real" conversation of any kind. I feel like I have already lost my mother, and I feel grief constantly. At least, grief is always there in the background. And there are a series of losses, which do not become apparent unitl later - the last time we had a proper conversation, the last time I saw her in her own home, the last time we went out for lunch. This grief goes on for years, even though she is still alive.
  20. Omaha

    Omaha Registered User

    May 22, 2015
    Grieving way before a person dies

    Over the last year I have felt that by the time my husband dies from Alzheimers I don't know what a funeral would be for. I need it now. I need people to know how hard this is and to help me out now. But he is still walking around talking and we don't have a way to acknowledge the huge losses in personality that occur to the people closest to the ill individual. YOur post helped me a lot.


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