After the trapeze day, Trish slept for three days straight. Her body is giving out. Our amazing nurse, Sheila, told us this is what the end is like. Sheila’s words ring through my head as I hold my coffee and watch over Trish: “A day she gets out of bed and talks, is not a day she will die’
Trish stirs but is groggy and just wants more pain killers from the automatic pump. I press the Dilaudid button a few times knowing that each press of the button means she is closer to death. (This post, two years after her death, is constructed from notes and drafts. I wasn’t able to write about this for a long, long time. It completes the story of our journey with Trish and the cancer that took her.)
I keep the girls home from school hoping they could get some good conversation time with her, not knowing that she was in her final 48 hours. But Trish isn’t interested in talking, much less getting out of bed. She’s too weak. And she’s so stubborn!
“GET THE FUCK OUT OF BED”, I think in my head, knowing that it’s useless to demand anything from her, but wishing that somehow enough rage and tears would change the situation. I shake her, and offer food. She dozes again…. FUCK FUCK FUCK.
“The girls need to see you , honey.” I say, softly, desperately. And it works. Her back straightens, her eyes focus, and the awareness comes over her silently. She doesn’t say anything but I know she’s willed herself awake.
After a minute, to let her acclimate, but not long enough for her to fall back asleep, I lift her gaunt, paralyzed body and put her in the wheelchair. The pain pump and catheter have to be disentangled so she can move freely. She winces. Traveling to the other side of the house is as hard as her toughest adventure travel.
Trish’s brain is still going, but it’s shriveled like her body. She mumbles softly and is confused and is really there for long moments. But in between the the painkiller is too strong she becomes an opiate zombie, confused and delirious.
We roll her into the living room for what will be the last time in her life. Old friends Lori and Greg were with us, as was Trish’s Mom, Suzanne, and sister Becky. And her daughters. Trish, the mom is with her daughters in her home for one of her last days.
The leaves are changing outside, and the weather is gradually cooling. Birds are becoming more scarce, and the perennials are getting yellow. The tone is somber but calm compared to the insanity of August and September when I was trying to care for her myself. The nurses come daily and clean her and deal with the pain management pretty effectively.
Family and friends are here regularly, so many that I have to schedule them tightly, and it’s always uncertain when Trish will be awake anyway. Several go away without getting her lucid attention. As much as possible, I try to help friends and family grieve, by giving them time with her alone, encouraging them to reminisce, feeding them and holding them when it becomes unbearable. I’m the griever-in-chief, responsible for this community of sorrow.
Inside I’m a more a wreck than ever. The grief has control now, hope has surrendered. I cry constantly. I see her stuff that will out last her body. I walk through rooms she will never see again. I sleep next to her hospital bed on our old brown couch just to get my last few hours with her. The beep of the pain pump and low raspy breathing keep me awake.
And I’m administratively preparing for her death, especially the memorial service and disposal of the remains. The simplest are the cremation and documentation plans. We’re not sure yet where we will put her ashes, but neither of us wants to be buried so it will most likely be an ash scattering.
Last week I asked “Where do you want your ashes scattered, Trish? San Francisco? Here?” It’s not a question she would have been comfortable answering in health. It’s too abstract and symbolic, and she preferred the pragmatism of the moment. She had no answer, just silence. “Tahoe, maybe?” I suggest, and she nods, with a tear.
The Tahoe area has been a place she has been going since she was a teen, swimming and water skiing in the summer, downhill on the ski slopes in the winter. Her family met at least once a year there for a few decades, and more recently it’s where her nephews and nieces would play with Emma and Lily, the next generation to enjoy Tahoe’s natural beauty.
Helpless as she suffers through her final weeks, I decided to go through her accumulated personal stuff. Trish was kind of a pack-rat. She didn’t acquire much, but she had a very hard time throwing things away. She saved every concert shirt she ever owned, the best of which is a ratty Blue Oyster Cult from the late seventies. And there were oh so many charms and knickknacks and little things.
Last week, I asked her permission to go through them when she had a moment to think. She unhesitatingly agreed. And then when I found several pictures of an old boyfriend’s hairy penis on polaroid, she mumbled ‘That’s what you get, mutherfucker.’ I didn’t scan than one, nor post it. You’re welcome.
To my surprise, the letters and diaries showed so much vulnerability. They cover the times in her life when she struggled, especially her mid twenties, a few years after the near death car accident and before I knew her. But I realize now that’s probably when people write the most, when they are in pain. I read a few to her, and she gave me little reaction. I wonder what she would have said to her former self, upset about the loss of a boyfriend, 20 years earlier?
Trish is waking up in the wheelchair. The girls surround her, a little uncertain how to act. They want their mom, and she’s only barely there anymore. To lighten the mood, I pull some of Trish’s wigs out and we all put them on, being goofy. We understand silliness.
The love around us is obvious. Trish’s best high school friend, Lori, dances with Lily, Emma and Trish to ‘Just Dance’ on the Wii for a while. Trish clearly enjoys it, moving with the slightest of motions and holding the wii controller. It was the summer of ‘Call me Maybe’. The girls don’t need words to share with Trish, they can just dance.
And then they read Trish the poems they were going to read at her memorial. I picked up my camera, sitting on the table with the hundreds of sorted photographs and hit record, suspecting that this might be an important moment. But what happened is the saddest and most powerful moment I have ever experienced. Trish and the girls shared goodbyes. She knew she was close to the end and it was time to give them the words they would hold for a lifetime she couldn’t share in person.
We lived that morning. We lived the shit out of it, and not by crazy activities, thrill rides or adventure travel. But just by loving each other and being present and joyful. Trish’s goofy delusions and Lily’s donut appetite marbled the grief and unbearable loss with laughter.
Later that same day she said cheerfully to old friend Greg, ‘See you on the other side.’ I knew she had come to terms with the reaper then. The girls played outside, blew bubbles and played on the hammocks we got in Mexico four years earlier. She got very tired, but good naturedly posed for a few final bad ballerino pictures with Monty our beloved dog.
There was little life left in her at the end of the day. I put her body, so light from weight loss, back in the bed. It would be the last time I held her, 18 years, 7 months, 17 days and a few hours since the first time our bodies touched on a date in New York City.
And then she slept. And slept. And slept. We never had her awake again. In her penultimate moments of life, the girls gave her cards that she would never read or understand. They had images of what mattered to them: travel, fashion, hair, laughter.
Her sisters, Paula and Becky had spent the sleepless night with her so they could wake us. They said Trish stirred and quickened her breath when I held her hand. And then she let go, surrounded by all of us, quietly weeping, holding each other, scared of a future without her, relieved she was no longer in pain.
Goodbye Trish, Mom, wife, daughter, sister, friend. We love you. Don’t rest in peace. That wouldn’t be your style. Just keep kicking ass, wherever you are.