The First Week After Hilary's Passing

WEDNESDAY, MAY 12, 2010

Hospice House

Hilary passed away two days ago. Two days before our tenth wedding anniversary.

Over the course of Sunday, Hilary slipped into a coma. Her last conversation was with her sister on the phone Sunday morning. She was so confused she could not tell the phone that I held for her in one hand, from the water bottle that I held in my other hand. She tried to sip from the phone and said “I’m not getting any.” When she said goodbye to her sister Gail, she said “Goodbye Cathy.”

I said “I love you” to her throughout the day. She repeated it back until she slipped out of consciousness. Those were her last words to me and I’m grateful for that.

I sat up next to the bed all Sunday night. She could no longer talk. She only let out loud guttural moans from the pain with almost every breath. Massive amounts of pain medicine from hospice had become useless because she had developed a tolerance to it. She had been at a very high level of pain for about four or five days. Her right eye was closed and her left eye was half-open, kind of glazed over.

Hilary had the most beautiful blue eyes.

I begged her to let go of this fight, let go of the pain. I told her that her mother and father were waiting for her and that she should go to that place of peace. I told her that I’d be OK. I know she didn’t want to go. She was one heck of a fighter.

Almost two years after her diagnosis of terminal cancer and after three and a half months of me caring for her at home with the aid of hospice, I could see that the end was near and that she should go into the hospice house.

I called hospice and they sent a man who came with a van and stretcher at about 1:00 pm on Monday. His name was Dana and he was a Christian. He had ponytail and wore a cross around his neck. It pained him to see Hilary’s condition, to see what cancer did to a woman who was only 52 years old.

Dana stopped rolling the stretcher in the living room and asked me if he could pray for me. I am not religious but I believe in God. He said the Lords Prayer and then prayed to ask God to give me strength.

I helped him roll Hilary out of the house and gently over the step and curb and I kissed her before he rolled her in. I felt sorrow as my wife left our home for the last time.

I went back into our house and looked out the window. There was a delay before the van drove away. Dana called me today to check up on me and he said that he prayed for her before he left.

I went to the hospice house and sat next to Hilary. She had stopped moaning in pain and was quiet. The nurse said sometimes the ride to the hospice does that. Her mouth was twitching, but that was her only movement. I stayed until suppertime. I told her I was going home to feed our “babies”, our dogs and cats, and that I would be back. I kissed her and told her I loved her.

I went home, fed the animals and a few minutes before I was going to head back to the hospice house, the phone rang. The nurse said that she had warned me that things change fast and that I should come immediately.

When I got there, I asked the nurse “if it happened” and she nodded her head.

She took me back to the room and Hilary looked much the same as before, except her mouth was still and her eyes were fully closed. I kissed her several times.

I cried and I told the nurse that Hilary was all that I had in the world. She said “What about friends and family?” I told her I had none and that I am all alone now.

On my way home, there was a old woman holding a hand-written sign by the side of the road. I rolled down my window and gave her a dollar. She said “God bless you.” I don’t know why I did that, but I’m glad I did.

THURSDAY, MAY 13, 2010

Pain

Hilary had an unusual amount of pain.

The cancer started out in her left lung but at the time of diagnosis it had already spread to her brain, liver and ribs. She had no problems with her lungs like coughing or difficulty breathing. The brain tumors were addressed with two courses of TomoTherapy pinpoint radiation. Her liver was not even a priority. The rib pain was something else.

Before she was diagnosed, she had a crick in her back like when you sleep in a funny position and wake up feeling it. However this pain was persistent. This minor discomfort increased slowly for the rest of her life. In the last year it had become anywhere from extremely painful to unbearable to her.

Oncologists prescribed heavy-duty pain medicines usually reserved for cancer patients, like Oxycontin. She took vast amounts, always more than she was supposed to. It hardly ever brought her much relief.

Since she was a child, Hilary loved to “rock”, as she called it. She would sit up on the couch with her legs crossed and lean back and forth in an easy rhythm. She couldn’t do it on just any couch. When we purchased a new couch she had to test drive it in the store. Rocking relaxed her and she loved to do it.

Nowadays she would take a bunch of Oxycontin pills, and sit on the couch with her face distorted, her eyes dull, leaning steadily forward because she could no longer rest her back against anything. She couldn’t rock anymore. She couldn’t even sit comfortably.

She would watch the digital clock next to our TV for an hour, waiting for the kick-in. When relief did not come, sometimes she would break down, sobbing and in tears. She would ask me, “When will the pain go away?”

On her fifty-second birthday last October, she seemed surprised whenever I said “Happy Birthday”, because she had other things on her mind. Her pain was the elephant in the room. It didn’t matter to her that it was her birthday.

Last Thanksgiving, Hilary cooked the turkey. She insisted. I lifted it in and out of the oven and to the table, but she did everything else. It was the best turkey we’d had in our entire lives. It was amazingly good.

It was in December that her pain went to new levels and there was very little relief. I knew her increased pain was from the tumors in her ribs growing bigger against her nerves.

Hilary always liked Sunday dinner. I always cooked either a pot roast or pork roast with gravy and Hungry Jack mashed potatoes. When doing the Sunday dishes after dinner, I’d always put away the electric knife in the top kitchen cabinet.

Sometime in December, as I put the electric knife away each Sunday, I sadly began wondering if I would ever need to take it down again. If Hilary were gone I wouldn’t be cooking any roasts or anything.

In spite of her pain, she loved to make the weekly trip to Winn-Dixie for groceries. She said it took her mind off the pain. She always wore her purple UGG slippers that I got for her one Christmas and she always wore loose fitting pajama-like clothes because anything against her skin caused her pain. In fact, I had to be careful not to move the blankets in bed at night or she would scream out in pain.

So I’d help her into the car, nice and easy, and she would sit the entire ride holding that handle thing above the passenger door to keep herself steady in anticipation of bumps or swaying. I learned to drive very slowly and carefully.

Once at the Winn-Dixie parking lot I’d take her hand and hold it the entire time, pushing the cart with my other. I’m very tall and it was an effort to make small shuffling steps as I slowly walked with her.

She told me what brand to get and what not to get and to check the date on that bread and get two quarts of cream this time, advising me all through the store. She always called me a sucker when I fell for those two-for-the-price-of-one deals where the item was actually overpriced and I wasn’t saving much.

Many people looked at her strangely in her unusual attire and cancer-weary body. But I am grateful for the few that said a kind word to her. She loved that and she loved to try to make a little small talk with them, as best she could. Sometimes she would even blurt out “I’m fine” if she overheard another conversation where one person asked the question to another. Sometimes they’d acknowledge her, albeit a bit surprised.

Today I’ll go to Winn-Dixie for some bread, fruit and frozen meals.

This will be the first time that I won’t be wearing my wedding ring.

I’ll check the date on the bread if I remember. And I’ll try not to fall for any of those two-for-the-price-of-one deals.

FRIDAY, MAY 14, 2010

Overpass

To get to any of Hilary’s doctor or lab appointments it was necessary to get on the highway because we live on the outskirts of town. That always involved going under an overpass before making a left and jumping on the highway.

At each exit ramp there is always a scruffy person holding a sign asking for handouts. Also there’s usually one or more homeless people reclining on the slanted cement under the overpass getting shelter from the Florida sun.

Hilary always pushed the button to lock the car doors long before we even got near this overpass. She was scared that one of these people would run up, open the car door and do who-knows-what.

Today I put six dollars in an envelope. I put the envelope in a bag with a small battery-powered cooling fan with two extra “D” batteries. Then I went to McDonalds and bought six hamburgers and put those in the bag. Then I went to a liquor store had the clerk put a cold 12-pack of beer into a bag.

I drove under the overpass, pulled over and put on my hazard lights. I waved to an old man who was sitting alone on the cement. He ran up to the passenger side window. His face was dirty, his clothes thread-worn and he was missing some front teeth. I pushed the twelve-pack out of the window and then handed him the other bag. I forget what he said, “Thanks, man” or “Have a nice day” or something. I just waved my hand a bit and tried to smile and drove away.

There is no way Hilary would have approved of what I did today. Had she been in the car, she would have been terrified.

Maybe that old man today chowed down on some burgers, enjoyed some cold ones with that little fan blowing in his face and still had a little cash in his pocket. Maybe he felt like a lucky guy today, like a king.

Even though I am empty and void five days after Hilary’s passing, maybe I helped a poor old guy have his best day in a while.

SATURDAY, MAY 15, 2010

Sonia

Hilary’s oncologists limited her pain medicine. They flatly refused to acknowledge how much pain she was in. We went through many oncologists because of this.

Hilary’s suffering was caused by tumors that decayed her ribs. As those tumors grew they pressed against her nerves. Large amounts of Oxycontin, Percocet and Fenanyl patches did little to ease the pain. In January, the pain had become so uncontrolled that she could not eat or sleep.

On my fifty-second birthday, I made the phone call for Hilary to enter home Hospice care. The initial heavy doses of oral Morphine they routinely give patients did nothing for Hilary. After scratching their heads for about four days, they finally fitted her with a CADD pump which administered Morphine directly into her right arm.

It was blessed relief to her. Every time she talked about it, she said it was a “God sent” (sic.) It allowed us to live together for the next three months with a fine quality of life.

Most patients that use the pump need the Morphine cassette to be replaced about every two weeks. But because of the amount of Morphine required to dull her pain, Hilary needed hers replaced about every four days. This meant that it would not always be the regular 9am-5pm Case Nurse who came to our home to replace the cassette. Any other time, the job would fall to one of the two on-call nurses, Amina or Sonia, who were both superb.

Sonia is West-Indian, Jamaican, I would guess. She has a very warm, kind and caring personality. Her eyes are big, brown and soulful.

When Hilary described her back pain, Sonia immediately understood. Years earlier, Sonia had been in the hospital for a procedure. After the procedure they needed to remove a drain tube from her side. As a nursing student herself, Sonia gave permission for a student doctor to do it. He ineptly yanked out the tube and caused her so much pain that she passed out cold.

Since that day, she has lived with unrelenting pain from nerve damage. Sonia said that sometimes all she can do it sit and cry because there is no release from the pain. She can’t take pain pills and still function. Plus they don’t do much for nerve pain anyways, as Hilary had learned.

Hilary and Sonia both knew this type of agonizing pain. They connected instantly because of their common bond. Hilary finally found someone who understood what kind of pain she was suffering. Sonia treated Hilary with unsurpassed understanding and compassion. She hugged Hilary, carefully though, because she knew about the tender spot. She kissed Hilary and told her she loved her. When Sonia came to our house, Hilary was so happy.

Sometimes Hilary would worry that she’s being a baby, when Sonia has to live a normal life with this kind of pain.

Sonia lives in our neighborhood and came by off-duty one evening, with her two little boys. I had just cooked Rice Crispy squares and Toll House cookies for Hilary, as I did almost every day. I offered the shy little boys some snacks and they eventually worked up the confidence to accept them.

I gave the older boy a big children’s book on the Titanic that we stocked for our home business. Sonia told him to read for us and it was remarkable. He read those words with the emotion and nuance of an experienced actor. He was gifted. The apple doesn’t fall far from the tree.

Late last Sunday afternoon, Sonia called and said she was on duty and asked if I would like for her to check on Hilary. Prior to this I had always had to call for a nurse, but this time it was Sonia who initiated it.

Hilary’s condition was deteriorating but she was not yet in a full coma when Sonia got here. Sonia checked Hilary’s morphine pump, blood pressure and pulse. Then she put one of those bed pads under her and catheterized her. She showed me how to change the bed pad and empty the catheter.

She kissed Hilary and said in her accent, “OK Honey, I’m gonna come back tomorrow and visit you. I have to go to New York to visit family soon, but I want to see you tomorrow. I love you.” Hilary acknowledged her with a faint wave of her hand.

The next day, on Monday evening, I drove home from the hospice house after viewing Hilary for the last time. I was truly alone now.

As I neared my driveway, there was a car that had pulled in just ahead of me. I parked and got out and saw Sonia getting out of her car. She was smiling and I knew she was looking forward to seeing Hilary.

In a daze, I said, “Did you hear?”

She instantly knew.

She shouted “No, God!”, burst into tears, stamped her feet and lowered her head and paced to back of her car. Then she spun around and quickly walked up to me, hugging me and expressing her sympathy while tears welled up in her big brown eyes.

We went inside the house and I got a box of tissues and we both cried and hugged for a little while. We both agreed that God must have sent her just at the right time. She said that she had told her husband she was going to make dinner a little late because she wanted to stop by and visit Hilary.

As we both cried and hugged, she said “I’m not supposed to do this, I work for hospice, I’m supposed to give you strength!”

She made sure I was OK and then she left.

I can find the strength to carry on, knowing there are people like Sonia out there.

SUNDAY, MAY 16, 2010

The Dogs

Seven days since her passing and Bingo and Billie still lay at the front door waiting for their mom to come home.