Four years into widowhood, I’m astounded at how entrenched I’ve become in the grief community. I would have guessed that when my husband died, after twelve years of struggling with dementia, that I would have done everything possible to leave the grief community, having been in it for so long. Caring for a loved one with dementia generates an unusually long and complicated kind of grief. Each new stage of the illness brings with it fresh grief: when you see the first signs, get the diagnosis, lose a little bit more of the person you love each day.
Widowhood came to me in stages, or perhaps it’s more accurate to say that I felt like a widow many different times over the course of my husband’s illness. When he finally had to move into to a residence, for example, I experienced bereavement as deeply as any widow. I dragged myself to work and visited him every day, but the rest of the time I spent huddled under the covers weeping for the husband I had lost.
That said, how is it that, after so long, I’m still so entrenched in the grief community? Grief, unlike your spouse’s clothing that you can pack up and donate to charity, can’t be neatly packaged, and you can’t give it away. You have to do something with it, preferably something constructive. I felt absolutely committed to wrenching something positive from the most devastating experience of my life. I suppose that I could have volunteered in a hospital or raised funds for medical research, but the best way I knew how to do it was through sharing my writing with others.
During my husband’s long illness, I found that writing about our journey was healing, and after he died, I wrote a novel that drew on my experience as a caregiver and widow. It’s about a group of people enrolled in a therapeutic writing course, where they find hope and opportunities for renewal.
Writing had lifted me out of the darkest abyss, and I desperately wanted to get that message out to others. I also wanted to make the point that while grief never disappears, there are avenues for growth and redefinition that the bereaved need to explore. For me, that redefinition involved reaching out to the grief community. It was in some odd way an act of defiance – the only way I knew of not allowing myself to be defeated by what had happened to me. Hearing from readers about how the book had given them comfort and hope fueled my determination to reach out to still others. This was obviously a win-win situation, helping others while I helped myself.
Arguably the most digitally challenged person on the planet earth, I struggled – and I mean struggled – to master skills I needed to publicize my book on the internet and publish articles on line, which involved visiting all sorts of sites where grieving people come together in an effort to heal. Reading their exchanges on Facebook and in other forums, I felt more than ever how important it was for caregivers and the bereaved to share their stories. Who else really gets what it’s like to care for a spouse with dementia or the aching loneliness of widowhood?
There’s enormous comfort in knowing that you’re not alone on what often seems a distant planet or parallel universe, that others have shared your craziest feelings and most bizarre experiences, that they have suffered what you have and somehow survived. What a relief to have your feelings acknowledged and validated, instead of listening to the steady stream of advice meted out so freely by well-meaning friends and family who, never having been caregivers or widows, urge you to “buck up,” “move on,” and “find closure.” Those of us who have, know how hollow these words ring and want instead to hear from others who know, first hand, what grief is all about and the ways they found to live with it.
Our experience of bereavement makes us an incredible resource for others and gives us an opportunity to make our own grief generate something positive. To make our own grief generate something positive. Those eight words are so empowering! Make our grief do something? Be in charge of that implacable force that has swept us up and taken over our lives?
Well, not entirely. Grief is a chameleon that changes forms, swooping down upon us at the oddest times and in the most unexpected places. It’s a ghost that can reside quietly in the attic for days, or even weeks, on end, but has a habit of drifting downstairs to haunt us at a time of its own choosing. We can’t make it go away. But using our grief to good purpose is something all of us can do.