- By Dan Browning
Editor's Note: This is the 13th blog post in a Next Avenue series by Dan Browning about his family's experience coping with his wife's frontotemporal dementia, or FTD. Find earlier posts here.
What’s the right answer when someone asks how you’re doing after your wife dies?
“I’m all right,” I say.
They look at me with concern. Do they wonder why I’m not falling apart? Do they think I’m putting up a front? I’m not.
If they pause long enough, or probe further, I say that grief comes in waves, which is true. A song will jerk out a tear. A visit to the graveyard will bring me to my knees. There, I talk to my wife, Liz Cummings Browning, who died May 23 at the age of 53 from complications related to a brain-wasting disease called frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS). I weep. Then I leave and get on with life.
What Does Grief Really Feel Like?
I have two adult children, 21 and 19, who still need me. My son has autism and is learning to navigate a new world without his mother and the family dog, who had to be put down two weeks after Liz died. My daughter is entering her sophomore year of college, wondering what she wants to do with her interest in math and physics. As for me, I have a demanding job writing about medical research and health care at the Star Tribune newspaper in Minneapolis.
A dear friend who I haven’t seen in nearly 30 years wrote recently and said she hoped that I had friends to support me in my grief. “Stay away from turkeys and don’t listen to music. Of any kind,” she wrote.
(MORE: A Surprising Way to Handle Grief)
But my wife was a gifted musician. She cut her only album — Finally! — just before her 50th birthday, when the disease began distorting her personality. For the first two weeks after she died, I awoke every single day with one of her songs playing in my head. It stopped for a while, but it’s happening again now. It’s like Liz is speaking to me from the netherworld.
Is that grief? It doesn’t feel like it.
Liz was the sixth of 10 children, and her absence was underscored by her siblings at their family reunion this summer.
Recovering From Caregiving
Perhaps some people fall into an abyss after the death of a loved one. I don’t know how that’s possible. I feel shell-shocked, numbed by survivor’s guilt, yet energized by the possibility of starting a new life.
After two years of intense caregiving, I am grateful that I don’t have to chase after Liz anymore when she wandered away. I’m glad that I don’t have to guess where she or her personal care attendant decided to put the cutting board or dishes, and that I don’t have to mop the floor every day because Liz could no longer swallow. I no longer have knots in my stomach when a black person approaches, since Liz isn’t there to blurt out to a stranger that she loves black people because she attended a performing arts high school in St. Louis that was 60 percent black.
The scourge of FTD that turned my family’s life inside out has vanished, leaving a vacuum in its wake. I realize now that I had become co-dependent. I had defined myself as a devoted husband and caregiver and yet those roles died along with Liz, leaving me to define myself anew.
I’ve been cleaning out my wife’s things, filing for her Social Security “death benefit,” straightening out the errors Social Security made on her disability income, wading through bills and trying to keep my family intact as we struggle to redefine our roles without the connective tissue Liz had provided.
A Wife’s Unending Care
And yet Liz is continuing to take care of us. Because she insisted on having life insurance, I suddenly have enough money to pay off my daughter’s college loans. I have enough to buy some things I’ve wanted for years: camera equipment to replace the gear that was stolen from my apartment in 1989, perhaps a flat-screen TV to replace the tube version that I bought in 1990 shortly before Liz and I married. I’ve been to two martial arts “camps.” And I’m taking the kids to Yellowstone for a week.
I’ve donated to a handful of charities that supported my wife and others like her. I’m replacing a window, getting the floors refinished, fixing the plumbing and making other home repairs that we’ve neglected for years. When that’s done, I’ll invest the rest.
I know that Liz would have wanted the money to ease our suffering and help pave the way for our children, to whom she was so dedicated. Yet, each expenditure comes tinged with guilt.
A couple of people have told me that they’ve been waiting for the commotion to settle down before checking in with me and the kids. They know that’s when the pain will deepen, that our loss will be felt as summer fades and we head off to the Minnesota State Fair for the first time without Liz.
It won’t be long before winter tramples her grave, concealing a connection that helps keep her alive in my memory. What will my answer be then, when people ask how I’m doing? Will the grief fall with the snow?