There are moments when I look back and realize that however sad I am, I know that at least my mother didn’t have to grieve her grandson too, and for that, I’m eternally grateful.
When my son, Alex, was killed, my mother had been dead for 14 months. She had died following years of debilitating early-onset dementia which had stripped her of her health, good humour, charm, vivacity, mobility, and ability to talk.
For her, a woman who had once been a ballet dancer and had always lived life on her own terms, the worse affliction was not the fact she was bed-ridden in a room she could not escape, but instead, it was her loss of freedom and self-determination.
You may be trapped in a chair or bed, but so long as you can still decide what happens to you, your life is still your own. As her illness progressed, it denied her that right, and consequently, we were obliged to watch helplessly in the face of a disease that ravaged her body and mind.
Yet in all of that time of encroaching darkness, she was loved and surrounded by those who very much cared for her and ensured her welfare.
Back then, I didn’t have a word to describe my feelings but now I do – it’s called ambiguous grief.
The term ambiguous grief was first coined by Dr. Pauline Boss who used it to describe a physical absence with a psychological presence, as was the case when soldiers went missing during the Vietnam war. It also covers agonizing situations such as 9/11 when families ‘know’ that their loved one is dead but the body is never recovered.
The term has now been extended to include psychological absence with a physical presence, such as in my mother’s case of dementia. The feelings surrounding addiction, traumatic brain injuries, and the mental illness of someone you love can also fall into this category.
Dementia steals the one you love, bit by bit, taking them away from you, from themselves, until the very end when death comes and the essence of who they once were is extinguished forever.
During those years of ambiguous grief we, her children, struggled. Losing a mother is tough. There are times when you need to reach for the phone to ask for advice, to share news, to just chat, and she’s not there… and yet she is, somewhere, herself and not herself, out of reach, fighting her own demons, facing her own despair, unable to support her own children and those who seek consolation.
The frustration, the overwhelming feelings of loss, the sadness, the impotence at what was happening, and of how to deal with what was often an unhelpful medical community, wore us down and created friction within the family.
We held each other, argued, were as lost as she was.
We wandered through memories and a stolen future that we knew we’d never have, and we grieved not the fact that she was slowly dying, but the reality that in many ways she’d already gone.
The day my Alex was born she burst into the birthing room and held him tight. He was her first grandchild, and she loved him fiercely. His adoration of her was no different.
They were kindred spirits, free thinkers, no-holds-barred souls that recognized in each other a desire to live life to the full. Theirs was an inner fire that burned so bright that people couldn’t help but be drawn to them.
I observed their relationship with joy and saw how she took delight in all her grandchildren, sharing in their achievements, being present at their music recitals, their plays, birthdays, cooking cakes, favourite meals, hugging them, and loving them without reservation.
She was in her late 50s when she began to notice something was amiss and had it not been for the terrible disease that befell her, she would still be here today.
And yet, it’s bitter relief that she’s no longer with us and so does not have to witness the devastation wrought by Alex’s murder. In dying, she was spared the horror of facing the truth of how he was killed and what life is like having to go on without him.
She may not have been alive to comfort me when Alex was killed, but I know, that for me, had I had to see my mother grieve not only his loss but also my suffering, it would have been doubly unbearable.
Oh, how I miss these two vitally important people in my life who should be here, and yet are not.
I can only pray that my mother was waiting to wrap her arms around Alex as he ascended into heaven and that they are now both together in eternity, free of pain and free of suffering.
For more information on Ambiguous Loss, please click on link to Dr. Pauline Boss webpage