My Big Fat Portuguese Death Vigil

This is a story about what happens when you surrender to dying and magic happens. It requires believing in ghostly premonitions.

“The entire Matta family was outside standing on the sidewalk last night. There must have been 100 of them. I tried to get out of the building to talk to them, but the doors were locked. When I looked out my windows, they were still there. They wouldn’t leave. Someone would step forward, say something to me, and disappear. Could this have happened? It felt so real. I was so upset. I think they said mean things to me.”

“Oh, Greg, it sounds like a bad hallucination.”

“They’re getting much worse.”

“Yes, the hallucinations are such a horrible part of this Parkinson’s Disease. You know your Matta aunts and cousins would never say mean things to you.”

“I hope not.”

During the next week, my husband’s hallucinations continued. They got violent. He became agitated, frightened, and paranoid. He trashed his assisted living apartment. Fell repeatedly and gashed his leg. Refused to eat. The neurologist recommended a new $4,800 drug. A primary care physician ordered tests for a possible UTI. A wise nurse practitioner told me to call hospice.

“Your husband is in the early stages of dying. This is terminal agitation.”

The ambulance brought Greg to a hospice center late on a Monday night. I called our sons, who live thousands of miles away, and his brother to tell them that Greg was unlikely to live much longer. Come now.

When I arrived at the hospice the next morning Greg was unconscious and calmer, though still trying to rip out the IV and take off his johnny.

“Are you OK with us giving him more medication to relieve the agitation?” asked the doctor. “This means he’s unlikely to regain consciousness.”

“Yes, anything to stop the suffering.”

“Could you just step out of the room for a few minutes while we get him comfortable?”

When I went into the hall, I saw Greg’s brother talking to some of the Matta cousins, cousins who had been in the hallucination.

“How did you know Greg was here already,” I asked.

“We didn’t. Our mother is across the hall.”

“Aunt Irene is dying and she’s across the hall?”

“Yes. She came in five days ago. Can you believe it? What are the odds of two Mattas dying at the same time and being across the hall from one another?”

And so began a week of My Big Fat Portuguese Death Vigil.

My Boston family deals with dying with as few people around as possible. The immediate family and the person dying. We keep things quiet. We talk little, dispense medications, clean the house, hold our mother/father’s hand, make sure we’ve got food in the kitchen, and call the rest of the relatives when it’s all over. Talking takes too much emotional energy. Visitors are not welcome.

“Please, we’re OK. We’ll need you when this is over but not now.”

I thought this is how it would go with my husband. A quiet hospice center, our sons and his brother with me until he passed.

Greg’s hallucination of the 100 Matta relatives was like one of those ghostly premonitions in a Shakespeare play. Here they all were at the hospice center. And no one was disappearing into the ether.

My initial reaction was, “How am I going to deal with all these people? How can I be social and chatty when my husband is dying? Should I have brought him home to die instead of going to a hospice center? When I’m exhausted, I sometimes say snarky things. Do I have any brain cells left to keep my mouth shut if I get irritated or if my bitchy dark side rises like Persephone, the Queen of the Underworld? Please, God, don’t let me say anything I’ll regret.”

That’s the last logical train of thought I had. I just stopped thinking. I was too exhausted to even be anxious about what I might do or say. Years of caring for someone with an unpredictable neurological disease had worn me down. I was out of gas. I turned the lights off in Greg’s room and sat with him. Whatever was going to happen was going to happen.

After a few hours of sitting alone with my husband, there was a quiet knock on the door.

“Hey, Lois, we’re going upstairs to the cafeteria for a cup of tea. Want to take a break and join us?”

Two of Irene’s daughters and I drink our tea in the small cafeteria. The conversation is slow and effortless. We are all out of emotional gas. Though I’ve known them for 40 years, I feel a new closeness, a shared vulnerability. We’re walking in the dark together.

“So, what are you thinking about arrangements,” someone asks.

“I don’t know. Maybe Greg’s mother’s Congregational Church or maybe Our Lady of Fatima. I felt so depressed last Christmas that I went there by myself. I loved that church. I had never been there before.”

“You know the story, right?”

“Um, no.”

“Our — and Greg’s grandfather — owned the land that church is built on. He sold the land to the church and then donated money to build the church and the bell tower. Each bell is engraved with the name of one of the Mattas. How funny you ended up there and didn’t know the family story.”

We share ideas on which funeral home, cemetery, and florist, where to have the post-service lunch and post the obituaries. I feel so grateful. I hadn’t given any thought to what to do, but now these logistical decisions feel easier.

We gravitate back to the rooms where we sit, keeping our individual and collective vigils.

Cousins arrive after work, visiting one relative and then another. My son arrives from Miami.

I go home and sleep like the dead, knowing people who love Greg are with him tonight.

“I stayed and talked to Greg until 10 o’clock,” one of his cousins tells me the next day.

This cousin is known as the family talker and storyteller and as a compassionate, big-hearted guy. When Greg moved into an assisted living facility last summer, this cousin asked if he could visit. “Yes,” said Greg. “But tell him no more than an hour. You know how he can talk.”

“When I was with Greg last night, I think he said something to me. It was hard to hear him, but I put my face close to his and he said it again. I think he said, “Shut up.”

I burst out laughing. My husband’s last words were honest as always.

I regale the other Matta cousins with the story.

“Shut up? That is priceless.”

The death vigil is getting loud, and social.

I tell Greg I won’t have the service at a Catholic Church. When he was a child the nuns at his parochial school repeatedly told him that his mother was going to hell because she was a Protestant. He despised the church while I had a soft spot for it.

“Aunt Irene’s service will be at Our Lady of Fatima, but we’ll go to the Chapel. It seems right. It was your mother’s church and both Greg Jr. and Ian were baptized there.”

He squeezes my hand hard in acknowledgment, so hard that my wedding ring crushes my finger. This worries me and I go to the nurses’ station to find the doctor.

“My husband is still so strong. Are you sure that he’s dying?”

“He really is dying,” she says so kindly.

On Saturday, everyone is here, bouncing between rooms.

Greg’s sister’s son, a minister from Connecticut whom I’ve asked to do the funeral service, arrives with his four children. “Dying is part of life,” he tells his children in Greg’s room. “It’s very sad, but not something to be afraid of.”

A cousin brings a flowering spring plant into Greg’s room. “We need to have some beauty here,” she knowingly says.

An aunt arrives with her rosary beads and does a prayer ritual. She holds Greg’s hand, kisses his head, and takes a deep breath. “Greg and I were never close. But we were never far apart. Do you get what I mean?”

I do. So many relationships are like that.

“Now I have to go across the hall and see my poor sister.”

Someone brings in their sweet, gentle puppy.

“A Portuguese Water Dog!” the cousins gush. “So adorable.”

“No, it’s a Hungarian Water Dog.”

“No way.”

They choose to believe that any creature so intelligent and well-behaved must be Portuguese.

Sunday night gets quiet.

Different groups of relatives get together and make dinner plans.

“Want to come with us?”

“No, I’m going to stay here. I’ll get some mac and cheese at the cafeteria.”

Irene’s youngest daughter who was been the lead caregiver for her 96-year-old mother hangs back, too. Our spidey senses know that The Big Fat Portuguese Death Vigil is coming to an end. That and the increased morphine that the doctor is giving to these dying Mattas.

“Go home, Brenda. It probably won’t be tonight.”

“I don’t know.”

“I’m telling you. Get some sleep. I’ll be around for a while and will check in on Irene.”

She reluctantly goes home.

One son leaves Monday morning after being with me — and all of the Mattas — for most of the week. Another son is due to arrive later in the day.

I close the door to Greg’s room. I want my husband all to myself.

When I open the door several hours later, there is a ceramic heart dangling from the door handle.

“I thought you might need that today,” says one of Irene’s daughters.

Greg’s breathing is changing. He looks so handsome and peaceful that I want to take a picture. I want to remember this peaceful version of him, not the hallucinations and agitation, not the furrowed brow from so much pain and discomfort, not the mottled, cracked skin from taking so many medications for so many years.

I see Brenda getting ready to leave for the day. I go into the hall to say goodbye.

“I don’t know what I’m going to do if I get here tomorrow and you’re not here,” she says.

We hug. We know.

Greg died at 10:30 that night. Irene died the next night.

There is no right way to do dying. Quiet and intimate like my Boston family. Big and boisterous like my husband’s Portuguese família. The only thing I know is if you can let life — and death — naturally unfold, you might be lovingly surprised.