My late husband Bertin was diagnosed with a rare brain disease and died slowly after many surgeries over 4 years. He was a good solid family man, and we had been happily married for 14 years. The diagnosis was sudden, and so was each subsequent attack, followed by emergency surgery. I never knew when it would strike, and kept a bag packed for the hospital by the door.
In the beginning I believed that he would one day fully recover. The doctors never told me otherwise, though they always knew. I spent this time by my husband’s side when he was in the hospital, and on the phone arguing with the insurance company when we were home. My children were shuttled around with other families, and found me barely struggling to care for their basic needs.
The truth slowly dawned on me as his good days went from working, to walking, to getting out of bed, to recognizing us. He would recuperate most the way, and then suddenly decline until he nearly died. Then again. I could no longer rejoice when he felt better because I feared we were again at the top of the roller coaster, ready for a sharp ride down. It was a relief to finally enter a home hospice program: no more panic, no more surgeries, no more hospital. I went from being a wife to a full-time caregiver and single mother. Finally, he entered a hospice facility bed-bound and we had to accept the end would come, but no idea if it would be days, weeks, months or even years. It was years.
I have experienced what there is little support for: Anticipatory (Preparatory) Grief of a young widow-to-be. We also lost a lot of family support, my own mother was also being treated for breast cancer at the time.
I did find support groups for myself and the children that sort of approximated our experience, which helped a great deal. Comfort Zone Camp was the most potent support my children experienced. For myself, Friends in Deed in Manhattan helped me a great deal.
Now, more than a year after his death, we are re-forming as a family. My children are now young teens, forming into adults, and I am facing the approach of middle age. It seems impossible that we lost him, impossible that he’s gone, and yet impossible that he ever existed (it’s like a dream). My children really remember so little about him, remembering him mostly by when he was sick.
I used every crutch I could to alleviate the continual pain during those years: massage, partying with friends, meditation, support groups, private therapy, exercise. They all helped.
What I have noticed after so many years of anticipatory grief is that I also pre-grieved the losses to come: my mother’s eventual death, my children’s eventually leaving home, my own death. I have accepted that loss will happen to everything I have around me, and so I truly savor the moment when my daughter takes my hand. Fear of loss no longer holds me in such a tight grip.
I have to let go of the crutches that weren’t good for me, and continue with the ones that were.
I like to think we have healed and moved on from such a massive, tragic loss. In many ways we have. And then sometimes, I awake still half-asleep and find my hands moving out from the bed covers, reaching, wishing I could touch him again.
Our thanks to Ariel Jensen-Vargas for sharing her story with us.