The hardest goodbye: The death of my husband, Jeff

I have been quite transparent in sharing my brain injury journey, then our cancer journey when my 44-year old husband Jeff was diagnosed almost two years ago. Now, I would like to share with you how the rest of the story goes.

For those of you who are new to our story: I suffered a brain injury in 2012 during a freak fainting incident while getting a stand-up x-ray at a medical facility. My head went crashing down on the concrete floor and it was lights out for me. I have been in 6 years of brain rehab/clinical trials while Jeff was the primary caregiver for our baby girls and me. My brain injury symptoms have greatly improved, yet I still continue to get headaches.

Fast forward the clock to September 2017. Our family had a bomb dropped on us when Jeff was diagnosed with stage 3 esophageal cancer. This was only a short while after we buried my 66-year-old Dad who died of lung cancer.

Our world felt like it was spinning out of control as we grappled with the fears around the what ifs. A quick google of survival rates for esophageal cancer told us it was within the realm of possibility for him to survive, yet the statistics showed the odds were against it.

Jeff embraced the chemo and daily radiation for 5 weeks like a champion riding a wild rodeo bull. He kept getting bucked off, facing symptoms of severe nausea and fatigue, and then out of sheer determination would climb back on and ride again. Then after he was burned and poisoned, the final piece of the possible cure was for him to be cut. He endured a 7-hour esophagectomy surgery. This surgery removed a large part of his stomach, esophagus and almost 50 lymph nodes. This surgery left him in intensive care, learning how to walk and eat again.

We prayed the cancer journey was behind us. Our hopes were shattered when Jeff and I were told in August 2018 that his cancer had returned…or maybe it never truly went away after his surgery a few months earlier. The cancer had spread to the peritoneal lining of his stomach. This put him from stage 3 to stage 4 and also delivered the heartbreaking news that this cancer was not curable. Jeff had likely months to live.

We cried and held each other and thought about how in the world we were going to deliver this message to our girls. They were 7 and 9 years old. To them, their Daddy was the best thing in the whole world.

Jeff and I approached the girls with honesty and love, like we have throughout their lives and this entire cancer journey. We told them the cancer had spread and that the doctors thought this will be what Daddy ends up dying from. The girls asked questions like – Is our last summer together as a full family? Who will walk them down the aisle at their weddings? Who will take them to the Toronto Blue Jays games? Will Daddy ever live to see them graduate from elementary school? Their minds were running as rampant as ours were, trying to figure out how we could possibly say goodbye and how this would totally change our lives forever. And, for Jeff, he was facing the ultimate fear of life carrying on without him and emotionally scarring the three people he loves most in the world. I struggle to imagine what it must have been like for Jeff to think about his girls and wife continuing to live in a world (albeit missing him at every turn), where he didn’t get to be there to share in the joy, hardships and support us through it all.

But Jeff never gave up fighting. We both knew the odds were stacked against us, yet there are those miracle stories of complete cancer recovery out there and we figured we would never know what was possible if we didn’t try to help Jeff survive. We tried naturopathic treatments, mindfulness, off-protocol medication from his oncologist, palliative chemotherapy. And I made a concerted effort to try and make this the most meaningfully fun time of our lives.

Now, this was a struggle as Jeff was scared, stressed and sick. Yet, we tried our best to build this magical time. We went to Disney World for the first time with our girls. Jeff completed a triathlon in Ottawa for Winterlude where he skated 8 km, ran/walked 5 km, and then I was able to finish the last leg of the race with an 8 km cross country ski. He also participated in the North American Pond Hockey Tournament. His team won the championships, with Jeff scoring the winning goal and being named the MVP. All of this with stage 4 cancer and on chemotherapy. Our girls and I were honoured to be along on the ride with this inspirational man.

But on the morning of our big girl’s 10th birthday, our lives changed yet again forever. We decided to spend the day together doing something fun. But first, I had to take the dog for a walk while Jeff took the girls out for breakfast to celebrate this double-digit milestone in our family. On their drive back from breakfast, Jeff’s extremities stopped working. Thankfully, the car came to a halt safely in the middle of the city street. A woman pulled up alongside them and proceeded to yell and swear at my husband, calling him stupid, before driving away. (It took me a while to get over my anger at this lady as she could have asked if they needed help, especially with kids in the car.)

Within moments, my husband regained strength in his body and chalked it up to bad neuropathy in his hands and feet from the chemo. But when they arrived at our home, he couldn’t get out of the car. I went out to the driveway when I heard the kids flying out of the vehicle, crying and telling me the car wasn’t working properly. They said some lady was yelling at Daddy.

I opened Jeff’s car door and he was in tears. “I can’t move,” he said fearfully. “Here, I’ll help you,” I said as I put my arm around his neck and prepared to hoist him out of the car. But he was like dead weight and even though he’d lost 100 pounds from his athletic frame since his cancer diagnosis, I couldn’t budge him.

I shut the car door and ran into the house to call his nurse, bringing the phone back outside so I could be with him. The nurse advised calling 9-1-1. I made the call. They notified me to gather all of his medicines to give to the paramedics. I called the girls back outside and told them they need to stay with Daddy and also call Grandma to see if she could drive to our city and meet us at the hospital to take care of them. The girls were crying, and our oldest asked if we are going to be able to go away still for her birthday. “I don’t know,” was my honest answer. I felt like everything around me was moving in a weird combination of super-fast speed, alternating with slow motion, waiting for the ambulance which seemed to take forever. I promised our birthday girl that she would still do something to celebrate with Grandma and if we couldn’t do something as a family, that we’d do something another day to make it up to her.

As the ambulance pulled up, neighbours came outside wanting to assist. There was a crew of people who helped transfer Jeff from the car to the ambulance stretcher as my girls cried. The stretcher rolled over our Hosta plants in our flower bed that Jeff had built, ripping them all to shreds. “I am sorry,” one of the paramedics said as she looked down at the flowers wrapped around the stretcher wheels. “I don’t care,” I said. The only thing I cared about was Jeff being healthy. Our life has been ripped into shreds like these flowers since my brain injury and then Jeff’s cancer diagnosis. None of this other stuff mattered in the least. When it comes down to it, it’s all about our relationships and love. Health, happiness, and safety.

I instructed the girls to get buckled up quickly in our SUV as I wanted to follow that ambulance closely. Our youngest asked, “Aren’t they going to turn on the sirens?” wondering if the ambulance was going to start making some noise. “It’s not that kind of emergency, honey,” I said. Within two seconds of me saying that the ambulance sirens started up. “Oh shit,” I thought to myself. It is that kind of emergency.

At the hospital, Jeff was told he had a stroke. The stroke had paralyzed him completely down his right side from his arm, hand, core, leg, and foot. He was admitted and we heard a doctor say he could be in for a week. Thank god he will be okay and home to us in a week. One of my Grandma’s had many strokes before she passed away last year. They seemed to knock her out for a short while and then she’d be home and back at it again. Albeit a bit slower each time, but she seemed like herself again in many ways. I was hopeful the same would happen for Jeff… But, it didn’t.

After the first few days of being in the hospital, Jeff was moved onto the rehab floor with the intent of helping him get some movement back in his extremities by stimulating them and his brain. This move to that floor is a good thing, the doctor assured us. But, when one of his rehab workers came in and wrote Jeff’s scheduled departure date on his whiteboard, Jeff was devastated. It was two months away! What happened to the departure plan in a week?

But as time went on it was very clear that Jeff would need as much time as he could get in rehab. His movement in his arm and hand on the right side was returning slowly but was very weak. Jeff had always been super smart and very athletic. He was always good at things. So, this was tough on him to have to work so hard to barely move a finger as he clumsily slid a ball across the tray in front of him before it hit the ground as he couldn’t stop it.

Jeff’s leg still had no movement. He had to be transported by a mechanical lift, his body encased in a hammock attached to a motorized apparatus that resembled a small crane used to elevate his body above the bed and then move it so he hovered above his quadriplegic-style wheelchair at the side of the bed before gingerly dropping him into the chair. Jeff could tolerate sitting in this chair for about an hour before the pressure in his lower back became unbearable. You and I are constantly shifting when we sit down. Likely we don’t realize it, but we are. That is our body’s way of alleviating pain caused by pressure resting on one spot for too long. Jeff couldn’t move due to the paralysis from the stroke. I couldn’t believe he was doing triathlons months ago and scoring hockey goals and now he could barely move. Life can change in a moment.

Due to the stroke, Jeff was not able to continue his participation in palliative chemo. He was too weak, and the chemo would just further beat him up. This time away from chemo allowed the already aggressive cancer to ravage Jeff’s body with no obstacles in its way. Jeff’s health deteriorated and he was moved off the rehabilitation floor to an acute care floor. The doctor on duty told me he will not be leaving the hospital. Even though I had researched this cancer extensively and had developed a friendship with Jeff’s oncologist who would call me once a week for us to brainstorm possible options for Jeff, this news put me into a tizzy. I gathered Jeff’s belongings from the rehab room with my heart beating so hard I felt it was going to leap out of my chest. This all felt like a bad dream.

Jeff and I celebrated our 11th wedding anniversary on July 26. When I arrived in the morning at the hospital, Jeff was in a panicked state. “I feel like I am going to die,” he said. He told me it had been a really rough night for him and that he felt like he had been holding on to see my face. I held him and tried my best to calm him while stepping out to see the nurses and doctor on duty to ensure Jeff’s medication would be adjusted to control his pain. Then I spent the day with him in his single-sized hospital bed, watching the movie Second Act with Jennifer Lopez and other shows on the TV. I ordered dinner from Skip the Dishes for us. He wanted so desperately to eat, but all he could do was pick at his food. Before, I would be on his case a bit on the eating as I wanted him to stay strong to heal. Now, I knew that this was part of the dying. I didn’t want him to go through this and I was definitely not fully accepting he would die, yet I understood I needed to trust the intelligence of his body.

From there, Jeff declined more and more each day. On August 5, the doctor told me he felt Jeff could be within 3 days of his death but that it is hard to tell when someone is young with a strong heart. I brought up the idea of transporting Jeff to a hospice. I had been in contact with the hospice since Jeff’s cancer came back. I wanted us to have options for whatever Jeff wanted for his death, if that day should arrive. The doctor told me he feared that Jeff would die in the ambulance. He didn’t think he was strong enough to be transported the 10-minute ambulatory transfer. We agreed to monitor Jeff.

That evening, I helped Jeff transfer to his wheelchair (much to the amazement of the nurses that we were still doing this transfer and leaving the room at this stage in Jeff’s journey) and then pushed him to an outdoor patio that the two of us had spent a lot of time at that summer. We had included our girls in many of these patio visits as they made frequent visits to see their Dad.

We sat in silence and then Jeff said, “I better go to that hospice place soon.” I asked him what he was thinking, and he said he felt like he was dying. I told him that the doctor thought the ambulance ride could wear him down a lot and that it was okay to die at the hospital. I wanted him to feel like he could give himself permission to let go there as I wasn’t sure we would be making it to the hospice.

But Jeff’s brother Jon had come down and spent the evening with Jeff at the hospital. He told me the next morning that Jeff had been restless all night. I knew that Jeff needed more intensive evening care than he was getting at the hospital, so the decision was made to move him to the hospice. I was praying the whole way, but he made it there alive. His stretcher was wheeled through the front doors and to the backroom, number 3, with a beautiful view of the lush gardens and gazebo. Looking outside, this place looked like what I envisioned heaven to be like with bright blue sky, lots of colorful flowers, and bright green grass and foliage.

The staff at this hospice was amazing and Jeff was able to get more care here due to the better staff-patient ratios, and a focus on quality end-of-life care.

On the evening of August 6, I stayed with Jeff at the hospice holding his hand all night long. His breathing was very soft. The girls came in and I got pictures of each of them holding his hands. Jeff was heavily medicated on a continuous pump for pain as well as an additional pump to help him remain calm as he was really fighting his death. He desperately didn’t want to leave our children and me and this was putting him into a state of anxiety. The doctors, nurses and I didn’t want that for him so I gave my okay for this pump so he could find more peace in his final days or hours, knowing that this would also cut off my communication with him as was would be really out of it.

On the morning of August 7th, I was awoken early by a nurse who came in and announced joyfully that he made it through another night. I was happy to hear this news, although, knew I should probably feel conflicted as we were in a hospice after all and Jeff was in a state far from the form of existence, he would want for himself. The nurse went through his closet and held up his green St. Paddy’s Day shirt. “Is this okay to wear?” she asked. I felt like someone kicked me in the stomach. Jeff was born on St. Patrick’s Day and had worn this shirt every birthday we have been together. Something inside me said this was going to be the shirt he leaves the world in too. All I could do was nod at the nurse as she began to pull this special t-shirt over the head of my husband who resembled a rag doll in his movements, his eyes mostly closed but showing some whites due to even the energy it takes to fully close his eyes now being too much.

I laid in the bed with him. His eyes were open, but I don’t know if he could see me as they didn’t really look focused. I could tell he heard me as I played a song for him song by one of our daughters and he raised his eyebrows and kind of smiled and squeezed my hand. We talked before about this and I asked him to squeeze my hand if he got to the point where he couldn’t verbally communicate but could still hear me.

Then I held him, and I told him,

“Every time the sun touches my face, I will think of you.

Every time the winds blow against me, I will think of you.

Every time a raindrop falls on my face, I will think of you.

When I dive into the water at the beach (my favorite place), I will think of you.

When I close my eyes at night, I will think of you.

And when I wake up in the morning, I will think of you.”

Then I was so exhausted with almost no sleep from the night before that I decided to go into the reclining chair beside him and try to catch some shut eye. But I didn’t sleep. After 30 minutes, I opened my eyes and looked over at Jeff. I noticed his breathing had big gaps. I got out of the chair and went onto the bed with him. I held both of his hands and told him I am here and that I love him so much and I am so proud of him. “You rest, honey,” I told him. I watched as a single tear fell out of his right eye and rolled down his cheek. I kissed it and tasted the saltiness of his tear. I remembered my Mom telling me that my Dad had three tears roll down his face in the moment of his death. Is Jeff dying now?

Then he took another breath and I noticed his lips turned a bit blue, but his facial colour was still the same. And then there was a 10-second pause and I thought, is he dead? Then he took another breath, and I thought selfishly, “Oh good, he is still alive.” That was his last breath. It had been about one minute from the time I got out of the recliner to sit with him on the bed. Thank God, I had looked up at him at that moment.

I held him briefly, waiting for the next breath. I didn’t see a breath but thought it could still be coming as breathing with long pauses in between can be part of the dying process. Then I rang the bell and anxiously stood in his doorway. The PSW asked if we needed help, I whispered I think he is gone. She said she’d go get a nurse and ran to do so. I rushed back and curled up in the bed with Jeff. I began to cry as the nurse came in and I said, “I don’t think he is breathing.” I could feel the panic build inside of me as I kept repeating, “I don’t think he is breathing.” The nurse put a stethoscope on Jeff’s chest. “He is gone,” the nurse said. I let out a mournful wail as I laid with him, clinging onto him so tightly and kissing him all over. “I love you. I love you. I love you,” I said over and over again as I tried to stock up on enough kisses to get me through the rest of my life.

Then, I phoned for the girls to come. I just laid with Jeff and cried and cried. When the girls came, I told them in the sitting room right outside of Jeff’s door that he had died, and they began to cry. I brought them into the room, and they were devastated. For five hours, the three of us laid in the single-sized bed with Jeff. I put his arms around us so he could hold his three girls one last time.

Watching the funeral home staff come and take Jeff away was the hardest thing I’ve ever had to do. To get up from his embrace and know I will never feel his arms around me again. To know that the four of us will never be together in one room like this again was the most heartbreaking feeling I have ever experienced. Yet, I knew I had to get up. I knew I couldn’t stay in that room forever and that I have children to take care of and they were going to need every ounce of me that I could give them.

When we came home after grabbing something to eat with my Mom, the girls were going nuts with emotional agony. Jeff knew that nighttime would be especially hard for us, so he had pillows with pictures of him and each of us made to give to us on his first night in Heaven. He also wrote letters for each of us and birthday, graduation, wedding cards for the girls for the future. He had a special package set aside for me, too, with a shirt, letters and a few gifts.

I know this is a long blog, but I am processing this as I write, and I want to do Jeff’s dying the justice of sharing his/our story. We miss him with all our hearts.

Jeff had set up a ‘Jeff’s Girls Education and Care Fund‘ in place of flowers since nothing meant as much to him as his family. Thank you for sharing in our family’s journey during this time. We miss him so.

I also invite you to follow our story on Twitter @potentialultd