Monday, August 30, 2010

Farewell, My Lovely

Verna, my wife for slightly more than 19 years, died this morning peacefully in her sleep at 12:07.

For the past ten days or so I had been going to bed between 11 pm and midnight and then leaving Verna with a nighttime caregiver. Her two brothers, Jim and Marty, and Jim's wife, Liz, alternated sitting vigil each night since this past Tuesday.

But I sensed Verna might die some time in the middle of the night, so I decided to remain downstairs with her. I climbed onto her hospital bed and lay down beside her. She was very warm. I clasped my hand into hers and told her how much I love her, will always love her, will send all our love with her on her journey, and be enveloped by her love after she is gone.

"Verna, when you are ready to go," I said, "and join your mother in heaven, you should go. She is waiting for you."

Hospice had urged me to remind her several times during the day that I released her. I did. But I also knew that Verna, on some level, had to be aware I was her unconditional advocate because I administered alarmingly high doses of several pain medications--as prescribed by hospice--when some people wavered as she slipped into a deep, deep sleep Friday evening just before 11 pm.

I fell asleep for ten minutes next to her with our apricot-colored miniature poodle, Gigi, atop my stomach. Gigi jumped off of me onto the floor, waking me up. I looked over at Verna and stroked her hair and lightly touched her face. Gigi started to growl-moan as if to say, "OK, I took my late night pee already, aren't you going to give me my treat and put me to bed?"

So I got up and led Gigi to her kennel, where she beds each night, and carried her up to our bedroom. When I came back down, I could hear the Verna's breathing was more labored and her chest was heaving.

It was close to midnight, so I went to the kitchen to prepare her medications for the night, while the caregiver, Faye, sat by her side. As I was loading either liquid morphine, methadone, and ativan into various syringes, Faye said urgently, "Steve."

I bolted into the living room. "You didn't have to run," said Faye. Verna's chest still heaved and the gaps between each breath were a few seconds. She was very pale. I knelt down almost diagonal to her chest and knew she was about to die.

"Faye, please go upstairs to the bedroom on the right, and wake up her brother," I said.

Jim and Liz padded downstairs and minutes later Verna exhaled for the last time. We watched her chest rise and fall, rise and fall, and then stop. She was gone. I buried my head in her left arm and cried. Jim and Liz, each seated above her head, cried. Faye, who later said she was experienced with client death as a caregiver, sat quietly, a stunned look on her face.

Jim left the room to call Verna's other brother, Marty, who was resting at his hotel room with his wife, Donna, one of Verna's closest and dearest friends. He came over and sat with us. He and I held hands and cried over Verna. Marty then phoned his father, Martin, and told him Verna was gone. Then Jim and Marty drove 25 minutes into San Francisco to bring him here to honor his daughter and baby girl.

I phoned hospice and the on-call nurse, Robert, said he would arrive within 45 minutes, by 1 am. He also said he would request that the mortuary come to take Verna's body away at 3 am.

Verna's father arrived at 1:45 am and rushed to her hospital bed, wailing in disbelief. He, too, buried his head against her.

Saying goodbye isn't easy, but everyone does it differently. Since I feared Verna might die over the weekend, I phoned the parents of Miguel's best friend and asked if he could stay there on Friday and possibly Saturday night. Miguel had already told me he did not want to be home when Verna died. I said to him, "Miguel, I know how much you love Mommy and you know how much Mommy loved you. It's OK if you don't want to be home. I am happy that you are making the choices."

His friend's father lost his mother to breast cancer when he was 13.

Maya chose to engage with Verna. She climbed into her hospital bed many times to stroke her arms and hair, and say, "It's OK, Mommy, you will feel better."

I finally got to bed at 4 am and heard Maya rustling at 7. She came over and I pulled her into bed with me. "Maya," I started, "Mommy is now a star in heaven. She is with Grandma Chela," Maya's late maternal grandmother who died in 2008.

"No," she said, "You're joking."

"No, she died," I said. "But she's a star in heaven and will always be in our hearts."

"I'm going to check downstairs," she said.

But the hospital bed had already been stripped clean of its sheets and air mattress. Maya came back moments later.

"Oh, I am sad," she said. "Mommy died."

Then she climbed back into bed and said, "Poor Daddy, I will take care of you." I hugged her tightly and felt such immense love for her, for Verna, for Miguel.

"Maya, you have a playdate today with Annika after school," I said, hoping to keep her daily routine.

"I don't want to go to school," she said.

"What about your playdate with Annika?"

"I just want to go over to Annika's," she said.

I spent the day with two close friends, Amanda and Mercedes, and Verna's brothers, sisters-in-law, and Verna's father. I dropped Maya off in the parking lot of the school so she could go with Annika and her mom, who is from the Faroe Islands, which lie northwest of Scotland and halfway between Iceland and Norway.

After a 35 minute ride on the LifeCycle to sweat out some of my shock and anxiety, which I know cannot so easily be discarded, I showered and then drove to pick up Miguel. I was waiting for him on the sidewalk near his middle school as he strolled up eating a Ben and Jerry's bar. I put my arm around him.

"Hey, Miguel," I said, my voice wavering, tears clouding my eyes, "Mommy died early this morning just after midnight. I think she was peaceful. She just stopped breathing."
"You were there?"
"Yes," I answered.
He looked sad, but revealed no other emotion. He'd called last night and asked if he could spend a 3rd consecutive night with the Allen family. His friend's mom said he'd been much quieter during the day. I said, "Sure." His friend's parents drove over and picked up a change of clothes for Miguel.
"I put $10 in his shorts' pocket for snack," I told them.
On the ride home this afternoon I shared some of what happened with Verna leading up to and including her death. Miguel said very little. I'd given him three choices: return home for the night, return home to have dinner with family and then bed down at Casa Allen, or dash over to the Allens as soon as he finished his homework. He chose door number three.
"Can I spend the next few nights with Chris?" he asked.
"Yes." I reiterated that he could choose how he wanted to spend his after school and evening time amid this nightmare. I repeated my line about his love for Verna and hers for him. "Just make sure you communicate with me what you need."
Communicating her needs has never been Maya's problem. She played for three hours with our next door neighbors before going to Annika's house, then returned to the park with the neighbors and to their house for dinner after she got home. By the time she came trudged up the front steps after 7 pm, she was exhausted and, I knew, very sad.
After her dinner here of two cupcakes (hey, I can spoil her on this day of all days), we went outside and looked at the night sky.
"Tell me which star is Mommy," I said.
Maya pointed to a very bright one that was twinkling right above our home. "That's Mommy," I said. "And look how she's smiling down on us."
"We can go out every night and look at Mommy," Maya said.
I gazed at the shining star and said, "I love you, Verna."
"I love you, Mommy," Maya said.
Verna, our lovely mother, wife, daughter, sister, and friend, may be gone, but she will never, ever be forgotten. I believed she willed herself to die at a time when Maya was fast asleep and Miguel was away and I was right beside her.
Farewell, my lovely. I am eternally yours.

Saturday, August 28, 2010

Part of the Plan?

Maybe the Azande had it right.

A water tower collapsed, killing two tribespeople, while anthropologists studied the north central African tribe. The Azande blamed witchcraft. The social scientists surveyed the water tower and concluded that termites had eaten through the wooden posts and weakened the entire structure, causing it to fall on the men. The Azande thanked them for their explanation, but asked, "Why did it happen to those two men at that particular time?"

Whether life is a series of random coincidences or is fated one way at the most profound times, as the Azande clearly believed, has occupied my thoughts since Wednesday.

Shortly after Verna was first diagnosed with breast cancer in early 2006, she commissioned a photographer (thanks to our dear friend Christa), who specialized in mothers and their newborns to take a picture of her and Maya before Verna had her double mastectomy. In the photo, Verna reclined on our bed, virtually bald, naked from the waist up, her full breasts supporting the back of Maya.

A year later she had the same photographer shoot Maya and herself in similar poses. Maya the toddler smiled at Verna, sans breasts, and her full head of black hair.

The framed dual photos adorned the wall above our bed for nearly four years until Wednesday. I'd noticed a slight gap in the frame about a week ago but thought it could easily be repaired once I made the time. But when I went into the room Wednesday morning, two sides of the frame were dangling off the photo.

Again, I don't believe much in signs or messages from beyond, but I did pause to wonder why the frame ripped apart at this time? As Verna battled between a state of hallucinations and semi-lucidity, was what happened to the frame some cosmic communique or an explainable coincidence that was bound to happen at some point given the weight of the photographs and the cheap frame?

I know what Verna's answer would be if she could offer me anything. She believed in signs and portents with utmost conviction. She suspected she might have had something wrong with her before her original diagnosis after a series of dreams in which a poisonous spider lowered itself onto her chest.

But she cannot look me in the eyes right now and shout, "Aha! I told you so. The breaking of the frame clearly represents or is a message from the universe." Or tell me that it symbolized the damage we are witnessing to our beloved Verna and to our lives. Or that I am no longer supposed to have the framed pictures in the house.

She cannot speak because since last night, about 24 hours earlier, Verna has been asleep and, I fervently hope and pray, comfortable beyond measure after hospice upped her pain medications yet again.

I don't have the answer to the dilemma of the dangling frame and wires. And I don't believe the Azande's superstitious notions of the world make them primitive versus the rationality of trained scientists. I just don't know how to explain what happened here. Maybe the Azande were right.

Tuesday, August 24, 2010

Heart of the Matter

Yesterday was Terms of Endearment meets the Twilight Zone meets the Wefald and Friedman household. Verna basically said goodbye to Miguel and Maya. And, like the moment when Debra Winger addresses her children from her hospital bed, buckets of tears gushed forth.

It all started last week when Verna asked the spiritual support counselor in a barely audible voice, "I want to say goodbye to my kids."

So hospice arranged for a social worker and a bereavement counselor, who is also trained as a therapist, to help Verna facilitate the conversation. We decided on yesterday because Miguel was still home (school started today) and Maya returns from preschool in the early afternoon.

Prior to the meeting Verna asked me, "So hospice thinks I'm going to die?"

"Yes," I said. "But they don't think it's imminent. They just wanted us to schedule the meeting sooner rather than later."

Verna was pretty alert on Saturday, but dazed and slightly confused most of Sunday, so I was worried how coherent she'd be when she spoke to the kids. But she was surprisingly present once the gathering began.

Our social worker Deborah Schwing started by asking the kids to assess how Verna was doing through their eyes. Miguel said, "She's been getting weaker and is in a lot of pain." Maya parrotted Miguel's view.

"Maya," I said, "What's happeing to Mommy?"

"Mommy's going to die," Maya said.

"And then how will we see Mommy?" I asked.

"She'll be in star in heaven like Grandma Chela," Maya said.

Deborah then asked Verna to describe her feelings and how she understood her situation.

"Well, I'm dying," Verna said. "I'm angry that I won't get to see the kids grow up, won't be there for so many milestones--graduations, bar and bat mitzvahs, weddings. I am sad I won't ever meet my grandchildren."

Tears were flowing freely down Verna's face and mine. I felt intense anger and sadness as well that we and Verna were being robbed.

Deborah asked Verna to talk to the kids and share her hopes and dreams for them.

"I want you to find your passion in life. Always be good," she said. "Do unto others as you have them do unto you. Work hard. Work hard in school. Always do what is right. Be a good role model."

Miguel was quiet, head down, and preoccupied with a booklet near him on the recliner chair. Maya moved from the hospital bed, snuggling against Verna, to my lap. She was growing restless. At one point the beareavement counselor, Andrea, who will soon see Maya for play therapy, took Maya upstairs to play.

"The two best days of my life," Verna said, "were February 9, 1998, when Miguel was born, and January 19, 2006 when Maya had to come early through a c-section (so I could start cancer treatments)."

Maya and Andrea returned. "I love you both so much," Verna said. "And I will always love you forever and ever."

Deborah asked Miguel how he was feeling about Verna dying. Tears welled in his eyes, one of the few outward expressions of emotions he's allowed himself.

"I've been thinking about how I'm going to be without a mother," he said. I lost it again and rubbed my wet, wet eyes.

"And it's OK for you to be angry sometimes, Miguel, with your dad for not being your mom," Deborah said.

"I could wear one of her dresses," I said as Deborah and Miguel smiled.

"Just be gentle with each other," Deborah added. Then she turned to Verna, "Is there anything else you want to share?"

"Miguel's 12 so he'll have memories of me, but Maya is so young. I am worried she won't remember me as she gets older," Verna said, tears streaming.

"That won't happen," I said. "We will always remember you."

"No, Mommy," Maya said, "I won't ever forget you," a look of unconditional conviction on her face.

We will never forget Verna. Her life will always be a blessing and a legacy for the children, me, her friends and family. I truly hope our session brought her comfort. As her pain increases, she needs that positive energy to cope and rest.

Wednesday, August 18, 2010

Cosmic Stars

Our emotional roller coaster continues.

Maya sat on the living room floor this evening with me next to her and Verna's sister-in-law, Donna, on the couch. Miguel was at soccer practice after having spent the day with me and a buddy of his at a water park. Verna was asleep on her special recliner chair right behind us.

"Mommy's going to die," Maya said, lying on her back.

I got on my knees and edged towards her. "Yes, she is," I said. "But she will always love you so much. And she always be able to tell you how much she loves you. She'll be a star in heaven--"

"--Just like Grandma Chela," Maya interrupted. Verna's mother died in October of 2008, and we've always told Maya that she is a star in heaven illuminating the cosmos (but not in those words).

"That's right, Mommy will be a star in heaven," I responded. "I hope not too soon. But then we can go outside every night and see which star is Mommy shining down on us."

Maya looked up at the ceiling and said, "There's Mommy. Let's pretend Mommy died." She waved. "Hi Mommy."

Verna suddenly woke up and said, "Hi Maya."

Our hospice social worker said when these moments occur to take extreme advantage, which is why I engaged Maya and affirmed for her that, yes, Mommy is going to die. I tried to maintain an almost light or humorous demeanor as she and I talked. Donna, however, turned towards the window with tears in her eyes. Later, she and I held hands and I admitted, "I almost lost it out there with Maya."

But Maya knows what is happening even if she can't fully digest what death means. Last week, on the day Verna and I found out she might only have a few days left, I was driving Maya to her 1/2 hour swimming lesson after preschool.

"When we get home," I said, "we can see how Mommy's feeling."

"Mommy's going to die," Maya said. "And I'm going to be sad."

I reached for the proverbial brass ring and said, "Yes, Mommy's going to die. And we're all going to be sad. But we'll always have Mommy in our hearts, and she will always, always love you very, very much."

Yes, Verna is going to die. Sooner rather than later. Just not yet. Today her pain level hovered at a seven (on a scale from 1-10, with 10 being the most pain), she said, and didn't subside very much even with all her pain medication. Aside from insisting on going out to help Donna bath our dog who'd thrown up on herself in her kennel last night, Verna slept or was in a foggy state for most of the day. So tonight, just before I helped her upstairs to bed (she still prefers to sleep in our bed mainly because Maya, who shares a room with us, wants her around), I said, "Verna, where's your pain level right now?"

"Seven," she answered.

"Is it unbearable?" I asked.

She clearly shook her head. We have an agreement that once her pain becomes unbearable, she wants me, as her healthcare agent and POA, to instruct hospice to steadily increase her pain medication and cease the steroids, both measures that will hasten her death.

But tonight she did not hesitate to move her head quickly from side to side against the hospital bed pillow. Sometimes non-verbal communication is a beautiful thing.

Monday, August 16, 2010

What The !@#$&%?

Verna picked out her casket today. Yes, that's right. I wheeled her around a room filled with steel and wood caskets, ranging from $3200-$11,000, and she chose a dark wood one with the Pieta (Mother Mary cradling Jesus) and the Last Supper etched into the metal moulding around the perimeter of the coffin.

Surreal beyond the Twilight Zone would not begin to describe the swirl of emotions we experienced today at Montes Chapel of the Pines in San Anselmo (we get 10% off if I mention him in a blog--just kidding), about five miles from our house.

As I pushed Verna in her wheelchair to the front entrance, the door opened and two friendly beagles greeted us. Verna immediately smiled. I was worried for many reasons how our appointment might go. As hospice has increased her medication she has grown foggier and drowsier, so she spends a chunk of the day sleeping on her hospital bed in the living room. Would she even be awake or semi-lucid?

I'd promised Verna months ago that she'd be able to choose her casket. Knowing that her situation was becoming graver by the day, I called the mortuary this morning. The receptionist transferred me to the voicemail of one of their intake counselor's, Ed, who we later learned is the funeral director, owner, and sole fulltime employee. He also drives the hearse.

"I've worked here for 15 years," he told us. "And I bought it two years ago from the family that'd owned it. Mr. Montes still works with me parttime."

Well, my fears about Verna's cognitive condition were unfounded. I haven't seen her this alert in at least two weeks. She chose her casket, guest book, and prayer card scenes and poem, and decided to forego embalming and a rosary service on the eve of her funeral.

And as I sat there amazed yet again by my wife's unshakeable spirit, I also kept thinking, "This is not happening. This is not happening. When will our nightmare end?"

We shared that crushing anxiety with her father, brother, and his wife before we left the house for the funeral home. Maya was at school, Miguel at baseball camp. In the presence of a hospice nurse, the five of us kissed Verna's forehead, rubbed her arm, and cried. She cried, we cried, and all of us not so silently railed against how unfair it is that we are days, weeks, months away from Verna's death.

"The hard part is not knowing," Verna said to the hospice social worker as tears streamed down her face. "I just wish I could know how much longer I have."

The social worker nodded and then said, "I know."

In the middle of our appointment with Ed, the phone rang. "You can take that if you need to," I said.

"It's the Humane Society," he said. "I have to."

It turned out that either Ed or his assistant left the door open after we wheeled in and one of the beagles ambled into the neighborhood, where he was found by a Good Samaritan who'd called the Humane Society and left her phone number. While Verna and I surveyed the caskets, Ed walked a couple of blocks away to retrieve Fletcher.

Although we found out last Thursday that Verna could be dead within a few days, according to hospice and her oncologist, she seems to be doing pretty well after hospice adjusted some of her pain medications. "And I still have things to do," she has said.

She's been writing cards to the kids for all the birthdays, graduations and other special occasions she will miss; she's helping plan her nephew's wedding in mid-September. He and his fiance, who have a gorgeous 20-month old daughter, decided to take the marital plunge sooner in order to accomodate Verna. Today was also part of Verna's process of accomplishing tasks and creating more peace of mind for herself, and another of example of how she controls as much as possible in a situation that has mostly spiralled beyond all control.

"Well, we took care of that," she said as we left the mortuary.

Yes, we did. Verna picked out a casket today and I still can't f@#$%ing believe it.