After ten years in severe dementia brought on by a reaction to surgery, my dad died in my arms. Was it painful to lose him? Of course. Yet, his passing was one of the most intensely beautiful moments of my life.
Dad’s dementia was a shock to the family. He came out of a fairly routine brain surgery in a severely demented state. His ability to differentiate between reality and what was going on in his own head varied, but it seldom was good. He had picked up a permanent voice in his head we came to call Herman. His anxiety was difficult to manage; his frustration gut-wrenching. Dad lived in this state for ten years.
Our family grieved his loss even as he lived. Much as the families of people with Alzheimer’s grieve the loss of the loved one who is changing over time, we suffered from what is called anticipatory grief - the type of grief a person feels when they know someone is slowly dying. However, our grief was a bit different than true anticipatory grief. We had to deal with the shock of instant change, as wll, while we scrambled to figure out how to help Dad have some quality in his life while remained alive.
Dad’s friends were in shock over the change in him. His doctors were evasive as to the cause. Hardly anyone came up and said, “I’m so sorry,” as they do when someone dies. Yet Dad, as we knew him, was dead.
For ten years we did all we could to help him live a purposeful life. We coped and we grieved what we’d already lost, all the while knowing we’d eventually lose what was left of him.
Upon Dad’s physical death, I felt his spiritual presence with me in a way that had eluded me during those ten years of dementia. The shell that had trapped him for a decade was buried. I sobbed as they lowered his flagged draped casket while taps rung out from the bugle of an aging Korean War veteran. Still, I felt relief. Relief that his suffering - and ours - was over.
When I speak to groups of caregivers, I tell them that many of them will feel relief when a long, hard battle with a loved one’s suffering ends. I tell them they are not bad people to feel relief mixed with grief, when the death finally occurs.
Heads nod and often tears flow. Many people feel ashamed to admit to even an inkling of relief. One brave friend told me she had to fake sadness at her mother’s funeral. Oh, she was truly sad to lose that last remnant of her mother, but she’d been sadder before, as she watch cancer ravage her mother’s frail body. She knew her mother was ready to go. So, while sad to bury her mother, my friend was relieved that her beloved mother’s suffering was over.
Mixed emotions after a long, drawn-out death, aren’t odd or unusual at all. However, talking about them is. I believe the shame and emotional pain people often feel when they recognize their own relief at the death of a loved one is part of our cultural denial of death.
As we move forward to a place where we can talk about the fact that each of us will one day die, I believe we’ll find fewer people ashamed to admit that they are relieved when the suffering is over. This is not to say we who feel relief don’t miss our loved ones and feel grief that they are no longer with us. But having societal permission to admit that we are glad that the suffering is over will help many people heal. I think that kind of understanding is evolving, and for that I am - relieved.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.