Spent the afternoon cleaning out my mother’s apartment with my brothers, who are in town for this task. We got a lot done, but it was intense and draining. Shout out to my wonderful niece Anne who took endless loads of clothes and personal effects to the Agrace Hospice thrift store. I am so grateful for my amazing family as we help each other through this difficult process.

Have a family member you love who you haven’t spoken to in a while? Give them a call this weekend. It will be worth it.

Pop culture is really kicking my ass right now. My friend Paul and I recently saw “Victoria and Abdul,” which while I knew was about an elderly Queen Victoria, I did *not* know that a large portion of the end of the movie takes place at the dying Victoria’s bedside.

Then there was “The Meyerowitz Stories” on Netflix, where Dustin Hoffman’s character spends a chunk of the movie in a medically-induced coma, and the family speaks to grief counselors about what to say to their ostensibly dying father.

I had always been able to make my mother feel better. Even before she became ill, when we would have lunch together on Saturdays, I could tell that whatever was going on, she would be happier after our time together.

This only intensified once she started needing daily and then nearly constant care. Many days were so difficult for her – every step, every time getting in and out of a chair, was a struggle. Sometimes – not often – she would admit to me how hard it was just getting through the day.

This was the first time in my life I’ve gone to a funeral home to make arrangements for someone who has died. Maybe that’s unusual; I don’t know. But I was unprepared for how utterly strange it all seemed.

My brother and I sat across the table from each other in the funeral home meeting room, both struggling to keep our chins off our chests. Outside, a thin rain fell in fits and starts. On the other side of the door, there was what I can only describe as an Irish wake going on, with lots of music and raucous laughter and loud talking. We did our best to focus on the task at hand.

We don’t talk about dying or grief much at all in our society. That’s a shame, because it’s a complex topic that pretty much everyone has to deal with at some time. I thought I would share (with his permission) an email I sent to my oldest friend Paul Harrison recently after my mother’s health declined sharply. I thought it might help someone else struggling with these issues.

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PDH:

Several times since I’ve been home tonight, my brain has done this weird flop. I’m home, this is normal, my brain announces. And then it crowds in what is really happening. This is not normal. Mom is dying. This is as “not normal” as it gets.

It happened just now when I was jolted awake for some reason. For a second before my brain focused, it was just a normal night, and I would be going in to the office in the morning as usual. Then, nope. That’s not it at all, brain. Get with the program! This is a tragedy in the making, and you have a long way to go.

Then sometimes it feels like it flops over to the other side, and she’s already gone. There have been flashes of her real self over the last few days, but not that many, if I’m honest. The door is already open.

Maybe my brain is just trying to let me be anywhere else than where I am.

I think about all the times that I thought, without any real understanding, why don’t we let people express grief? Why must everyone be so stoic all the time? And I think about all the times over the last few days when I have been on the edge of melting down, and I have expended so much energy to just stuff it back in. No one’s telling me that – just the opposite. But I feel this intense compulsion to “keep it together.” And I’m incredibly embarrassed when I get emotional, especially in front of people. It feels shameful, like I’m doing her and everyone else a disservice. I know intellectually that’s wrong. But every fiber of myself says the opposite. I’m doing it as I write this.

I find I never really realized the extent of my connection to her. She is literally a part of me. That makes all of this so strange. At the same time, I rebel against that and I think, don’t make this about you. It’s about her, not you. All she’s gone through – the pain and loneliness and loss of so much that was so important to her. And now this is the “reward”? It’s so unfair.

I know there are many aspects of the last year or so that have, as you said, been so much better than many other people experience. That’s true. She has been surrounded by things and people she loves. She has had a fair measure of agency. And I have had the great good fortune to spend amazing time with her. But right now, in this moment, the pain can be absolutely overwhelming.

So I guess this is my way of trying to get some of this out of my head. You are my best friend in the world and what would I do without you? Which means, among other things, that you are the recipient of emails like this. Aren’t you lucky? 

Love,
Adam.

Thought I would share a couple more stories about my mother that I love. Again, they are especially funny because they go against her normal quiet, intelligent, unassuming self.

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My mother and I were in the theater watching “Searching for Bobby Fischer.” At the end of the movie there’s a tense climactic match involving the young chess prodigy. My mother is leaning forward in her seat, grabbing both armrests tightly, completely immersed in the action.

“This is so nerve-wracking,” my mother said to me. “I’m so glad you kids never did anything!”

“I love you too, Mom,” I said. 🙂

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The family was in Chicago over Christmas years ago – we used to spend every holiday at my grandmother’s house in Hinsdale, where my mother grew up. We were all in the car together, and I was in the backseat absorbed in the Chicago Reader. I came to the back of the paper, where the “adult services” ads were. I just had to tell the entire car how funny I thought it was that one of the “adult services” had a phone number that was listed as 382-DUCK.

“’Duck’? Why is that funny?” said my mother.

I prompted her that D, E, and F were all on the same telephone keypad button. She thought about that for a minute.

“E-U-C-K? Well, that doesn’t even spell anything!” she said.

Most of my favorite stories about my mother involve her behaving outside the bounds of her normal calm, intelligent, graceful demeanor. They sometimes had a very Gracie Allen feel to them, which was hilarious because she and Gracie share very little in common in Mom’s everyday life.

There was the time we walked out of “Forrest Gump,” and my mother sighed contentedly and said, “I’m so glad they hired that man with no legs to play the man with no legs!”

Gary Sinise was amazing as Lt. Dan, but he was definitely not an amputee, despite appearances in the second half of the movie. Hollywood magic!

“Mom, did you see in the beginning of the movie when he had legs?” I said, laughing. “They didn’t chop off his legs in the middle of production.”

Then there was the time we were at Barnes & Noble just before Christmas, and I saw on the gift book table a giant compendium of Anne Geddes photographs that were combined with a CD of music by Celine Dion. Amazed at this clear sign of the apocalypse, I held up the book for my mother to see the cover, as we were surrounded by shoppers.

In an extremely loud voice my mother exclaimed, “Well, that’s just a bunch of crap!”

All the people around her began to laugh, clearly sharing her understandable reaction.

I began to see that when I would tell these stories to people who had not met my mother, they got a very skewed vision of what she was like. Because unlike my stories, my mother is quiet, unassuming, and gracious to a fault. Her whip-smart intelligence, especially with words, was legendary. And she and I share a very off-center sense of humor, something that has given me intense pleasure over the years.

She also thought of everyone before herself. She drove friends to the doctor. When my grandmother was ill, she drove down to Chicago about once a week for months to see her. She wrote copious thank-you notes, sometimes to the point where I had to tell her that no, a thank-you note was not a necessary response to a thank-you note.

So when she became ill, and eventually had to have Hospice care (at home), she mostly worried how it would affect her family. But one of the many blessings of the last year, after she moved from Dodgeville into an apartment in Madison, was that she was surrounded by the people and things she loved. She had many challenges as her health declined, but she dealt with them with grit and determination and grace. She is my hero.

Barbara Bartlett Bunker Blust died this morning at the age of 79, quietly, surrounded by family.

If you would like to commemorate her amazing life, please send donations to Agrace Hospice.