There should be a word

Yeah. There should be a word for someone who is no longer themselves (not physically, none of us are teens forever!) with a fatal illness but not dead. Or a word for those of  us bereaved this way. The experts – folks who write books – talk about anticipatory grief or disenfranchised grief because the loved one hasn’t died yet.

But what’s the word? What’s the special status? For him or for me?

Revenue Canada has most kindly invented a status for the money of “Involuntary Separation” which helps with part of the issue. So far i have refused to accept that because I can’t bear to acknowledge it. My heart cannot bear it.

Nonetheless we, the partners, both of us, and probably all the people grieving and caregiving their parents with this fatal dementia which wreeks havoc with the person before the body – we need a word, a social status to explain our state.

Do other cultures have a word?

All this is in part brought on because i can’t go see my estranged love right now due to flu at the facility.  My yearning and grief has overcome me, but it is still the grief of separation, as if one of us was on a trip, or we had been quarreling, as we often did.  Not really true as a feeling, because even when I can go back and hug him and hold him, whether he remembers me or not, we are separated by much more than a temporary factor.

What’s the status? What’s the word? This might continue for years. I am not single or widowed. He is most definitely not dead. I hope he is still getting music to dance to.

Words would help. Any one? Any culture?


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4 responses to “There should be a word

  1. Is it OK to share this Delores? It’s a great question!


  2. The closest word I can think of is Bardo – The Tibetan word bardo (བར་དོ་ Wylie: bar do) means literally “intermediate state”—also translated as “transitional state” or “in-between state” or “liminal state”.


  3. Anonymous

    I agree BARDO is the word ..


  4. Jean Manness

    I am so lonely too during this lock down.

    I cannot believe how much I center my life around visiting Ken and just holding his hand and being with him.

    Yesterday some one told me that what happens is we keep normalizing the situation and when it constantly changes it throws us off again.

    I. E. she told me about a friend that was dying from cancer. Each time she visited her the situation had worsened and she had to make herself realize the new normal and adjust to it.

    This happens to us Delores. We get used to the stage they are at, and learn to live with it. Then the dementia progresses and we are thrown for a loop until we “normalize” the new stage.

    It is very easy to falter. And cry.

    Thank you for being brave enough to share with us the pain.

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