Grief: a deadening blanket of unbearable and invisible pain

escaping my thoughtsThe loneliness of my grief is sometimes like my private torment, only visible to my heart and soul… I try desperately to hide my tears, to live inside my ‘denial bubble’, but every now and then the pain escapes. It is then that I realise that my eyes are filled with tears, and the indescribable sadness, sometimes escapes as a moan. The cold loneliness of the loss of living without someone I once loved stayed with me for a long time, and the similarity to life living with dementia, facing each loss of a function, is not dissimilar.

It is devastating, isolating, energy sapping and occasionally, almost soul destroying, the reason I ‘hide’ it as much as possible. When this happens, nothing makes me smile, no words can comfort, no rational thought seems to stay with me… When it is a death of a loved one, we mourn, others mourn with you, and send cards and flowers, attend a funeral with you, ask after you, at least for a while.

But the grief of dementia is different, most don’t even realise it is happening, therefore never acknowledge it. And it is complicated and complex – never going away and just as you feel like you are recovering from the latest grief over the loss of yet another part of functioning, another one disappears, and we go right back in the pit of grief.

Grief is not just a state of mind, but a physical thing, a void, a deadening blanket of unbearable and invisible pain. The only protection is to ignore it and when that is no longer possible, then to sit inside the pain and allow it to be over. Tears, intense sadness, loneliness, isolation, whatever it takes to get through the barrier of pain. My initial palisade of non-communication (with others about it) is my protection, and yet, once I start to get over the intensity of the pain, my writing is my healing, my salvation.

Grief can rob us of joy, inspiration, motivation and tries to steal ones life, and although it has to be experienced, it also has to be beaten, not with a stick, but with some sort of ‘therapy’ or technique to dissolve the pain, and writing, for me, does just that. It is the other side of my silence, the way I manage to heal, rather than being trapped by the grief.

When my mind is not bursting with memories, which it is more prone to these days, I try not to neglect it, or to ignore it, but to fill my being, my life, my belly, with laughter, love and tenderness, and friendships, and most of all with caring for others, so that it is possible to see I am not alone, and that there are others also are experiencing their own grief and pain, and loss and sadness… none of us are really alone, even though we can feel that way some days.

Thank you to all my wonderful friends for being you… I love you all. xoxox

42 thoughts on “Grief: a deadening blanket of unbearable and invisible pain

  1. Beautifully written, Kate {big hug}. Unfortunately even after the grieving we are still faced with losses, the pain of which is still hard, years and years after. My memory loss is still particularly hard for me ……. even 19 years post diagnosis …..

    • Losing memories, is for me, perhaps the worst part of dementia… those blank holes in my own life, wondering what the hell happened on days or even weeks of it! Also the reason for the title of my first book. Sending big hugs xxx

  2. Oh Kate, your blog makes painfully clear what both living with dementia and long term grieving are like. Each person suffers their losses uniquely, but you have tapped on to so many universal parts of the journey with both. As you can imagine I am feeling the grief ride again as we approach Christmas, no one can take that pain away and I wonder if even time will. It just gets a little easier to tuck it way for brief periods of time. Feel my hug and love!

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  4. These end times are extremely challenging Kate….Just about everyone I know is being faced with massive emotions that bring them to their knees as our challenge as to how we will handle them. It is exhausting at best, crushing in its entirety. I guess this is when we find out how much we believe and trust in ourselves for only we can bring ourselves through the flames. Friends are an immense help thank goodness and fortunately writing has been a solace for you….Hang tight my friend…Thinking of you…VK

  5. You write beautifully. You really are a voice for those who cannot speak for themselves. You write from the heart and your message is felt. You touch lives. You messages will never be forgotten.

  6. Kate,
    May the above outpouring of love and mine added patch part of the hole of your grief. You put into words so articulately, so eloquently, so beautifully what I have been trying to write about for the last eleven years with Gregory and my journey through Dementia/Alzheimer’s. (http://mhorvichcares.blogspot.com) But your words are from your side of Dementia, not someone looking in and that makes them even more powerful and more profound! I too find that writing helps heal. But your hole of grief is also a sacred one that you are entitled to, no one can or should try to take that away or pretend that it doesn’t matter or exist. You and it should be respected, be supported, be loved as you walk through it to the side of acceptance and peace. Acceptance and peace will arrive. You are fast becoming a large part of my life and I send you supportive energies.
    Fondly,
    Michael

  7. Thanks for sharing your grief and pain Kate.

    I believe these feelings are universal. I don’t have dementia (yet), but I have personally experienced the same kind of pain you describe. I have found myself curled up in a foetal ball on the floor feeling like my guts were being torn from my body. I have begged god or whatever force there is to take me. We all suffer the pain of grief. It’s part of the human condition. It’s good to share it and to know we are not alone.

    I’m sorry for your loss Kate. I am also inspired by your courage.

    I’m sharing this on my FB page.

    #FightTheGoodFight

  8. Kate, I relate to your description of grief as a deadening blanket. I described it as a big soft pillow pushing me backwards with no escape. My only answer was to sit and write and write. I still find escape in sharing my thoughts with a piece of paper. Jeff

  9. Hi Kate, your blog has just described exactly what I have been going through with my wife who has alzheimers.Your ability to put it into words is very helpful.

    I feel I want to talk to people and hesitate as to who but those that i do, they don’t really understand.I think only those who live with it every day truly understand.

    Life has been so unhappy for me lately and the cold hard reality is, its only going to get worse. Like you said, I feel trapped by my grief… However I am trying all sorts of things to maintain some positivity. Laughter is very healing. I too have a journal which helps at times. I have people I can talk too. I have professional help. They are all extremely helpful but the grief, the sadness and the things that are robbed are hard to deal with.

    Once again thanks Kate. you are an inspiration and this blog in particular has helped me so much

    • Grief is such a universal thing, regardless of the loss. of course, there are differences from yours to my experience, as I’m in your life’s boat, but the pain, the sadness, the sense of loss, all so similar… hugs to you both xx

  10. Kate darlin’, what you write fills my so-often empty heart. Thank you for writing this.

    I grieve Veda, you n’everyone I meet in this new phase of my life. I grieve me. I grieve the 3 I loved so deeply before all this. 20 years of grieving and it goes on….
    Maybe we get accustomed to grief.

    But I’m only a semi-powerless onlooker, when all is said and done. I don’t stare in the mirror in the same way as you n’Veda do.

    This time though I wonder what shell of me will be left when I’m 70.

    We count our likely years in the world and wonder what difference our remaining energies can make, eh?

    I tell’ya GF, I’m doing my own playlist very soon. Only music has ever helped me ride the grief wave.

    PS Eat your heart out- we’re going to Vera Wang doing Brahms at the Opera House in a few weeks…I’ll be smudging my mascara and having a late night scotch to the memory of my dad, who died at my age doing what he loved best, running along a beach.
    We love you and are proud to know you. 💜💜

  11. It seems intrusive and crude to say anything about this blog and your last one Kate, they just say so much – about you of course but you’re also speaking for millions who have felt the pain, whether because of dementia or for some other reason and who can’t articulate their thoughts as wonderfully as you do. Finding your blog has been a godsend and I wouldn’t be without it.
    Peter

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