Support for all members of special needs families

What My Father Taught Me

Last year on Father’s Day, I wrote a post at Hopeful Parents celebrating my father’s life. Little did I know that a year later I would be writing here about his death. How do you say goodbye to a parent? Such a post takes a lifetime to write – a lifetime of learning, a lifetime of experiences, and a lifetime of love.

Although my father had battled colon cancer for three years, his rapid decline and death came as a shock. Around the time of Dad’s diagnosis, I read a statistic listing colon cancer with a survival rate of 85%, and I thought, Oh, he’ll be fine. But he wasn’t. He was in the 15% who didn’t survive. And I thought, why my dad? Why did my dad have to be in the 15%? At age 64 when diagnosed, he hadn’t eaten beef or pork for over thirty years! After all the treatments, the dietary changes, the positive thinking and prayer – why him? To lose a loved one to cancer is to have to live with many unanswered questions.

In addition to my unwavering belief – nay, my assumption – that my father would easily beat the cancer, there was his own unshakable, infectious optimism that he would do the same. He dove into his therapies – two rounds of chemo and one of unconventional hyperthermal treatment and radiation – and started drinking daily green smoothies. On his own he researched various supplements he could take (and took them), read tons of books on how to heal oneself of cancer, and listened to brain entrainment CDs so that his mind could help with the process. A devoutly religious man, my Orthodox Christian father, who had been a deacon for many years, also had countless people praying for him.

But what really made me believe that he would be fine was his positive attitude about all of it. He continued to travel the world, adding to his growing list of ultimately 55 countries he had visited throughout his abridged retirement. He called and emailed every week with updates about his health, and no matter what his condition was, including at one point a botched surgery leaving him with a severed ureter and a painful stent to fix it, he never complained. He never asked “why me?” or expressed resentment. Even at the end he retained his positive attitude. And the end was about as horrible as an end could be.

A month before he died, my father’s doctor told him he should stop driving because his hyperthermal and radiation treatments had made him too weak to do so. He was also experiencing ascites, abdominal fluid build-up due to his liver shutting down, but Dad made it sound like it was a side effect of his treatment, and I believed him. Because of the fluid build-up (ten or more liters in his abdomen at any given time), he was not able to eat much of anything. Somehow I believed that if he just took a break from the treatment (to stop the ascites), then he would be able to eat more and get some strength back. And then he could resume treatment and be fine. Oh, he’ll be fine.

But the ascites got so bad that he had to be hospitalized, and it was there that the doctors informed my brother and sisters that our dad had a few weeks left to live. My two teenage sons and I flew down to southern California from our home in Oregon, and my sister Macrina, who also lives in Oregon, flew down with her three-month-old daughter to say goodbye. Per Dad’s request, our sister, brother, and sister-in-law who live near him had brought him home to spend his final weeks on hospice care.

After we arrived, my sons spent the afternoon visiting with their loving grandfather, who had provided Grandpa Daycare for them when they were little and took them to Thailand when they were big. They held up various fascinating souvenirs around his house and asked, “Where’s this from, Grandpa?” They marveled at his massive movie collection and told him they loved him. Then I took them to stay with their dad, who lives in Los Angeles, for several days so I could care for my father.

There is nothing that can prepare you for the reality of caring for an incapacitated, dying parent. Yes, you get to say goodbye, but it is a horribly painful goodbye. Dad’s abdomen was so swollen with ascites that he could not walk. I spoon-fed him soup and small chunks of fruit and held straws to his lips for him to drink liquids. Per his request, I cleaned his teeth with a toothpick. I brushed his teeth, washed his face, and changed his adult diaper with the help of my siblings. When he was ready, Macrina lifted him, and I guided the bedside commode underneath him so that he could forgo the diaper for a bowel movement. Then she sat with him and patiently, lovingly coached him through the process while I ran to the other room and cried.

Combined with the sadness of caring for my father because he was dying, I tried to clean out his kitchen in preparation for the live-in caregiver we would need to hire and burst into tears when I discovered four identical bottles of organic extra virgin olive oil that Dad would never be able to use. That he had probably bought on sale, anticipating that he would beat the cancer and be around long enough to use four large bottles of olive oil. My sister Anastasia found a pint glass from her college that Dad had bought during a visit to her, and she had never seen it before. We found my sons’ birth announcements, worn at the corners, along with probably every card we’d ever sent to him. Everywhere we looked there were reminders of both his love for us and his hope for the future. He never gave up. He tried so hard to fight the cancer and at the same time to keep a positive attitude about it.

That night, Macrina and my little niece slept in Dad’s bedroom while I stayed on the futon in the living room, where his hospital bed was set up. All night long, Dad whispered what sounded like prayers and supplications. Usually I couldn’t make out the words, but many times I heard him say “thank you,” over and over again. Even as he faced an awful, untimely death, he taught me to be gracious. Sometimes I heard him say, “I’m ready,” and at one point he called out, “Take me now, please,” and I bolted upright in bed, my heart in my throat, listening to his breathing. I remained on the futon in the far corner of the room to give him his privacy, but a while later he called out to me, and I ran over to him. Thankful for the darkness so he couldn’t see the tears streaming down my face, I said, “Dad, I know this must be so confusing for you.” In his weak voice he said, “I just don’t know what’s going to happen to me.” I took his hand and, choking on my words, said, “In my heart, I feel – I know – that what a person believes is true for them. What you believe will be true for you. I’m certain of that, Dad.” He said softly, “Thank you. I needed to hear that,” and then he went to sleep. It was about 4:30 in the morning, and I lay on the futon and quietly cried.

That day was Sunday, the day Macrina had to fly back. She had the wonderful idea of giving a little goodbye party for Dad – just his four kids and his youngest grandchild. We toasted his life with his favorite drink, Pisco Sours, and opened a bottle of 2005 Andrew Murray Roasted Slope Syrah, which was divine. Dad wasn’t able to speak much at that point, but we could tell he was happy to have us all there with him. Then Macrina said goodbye to him while my brother and I distracted ourselves by entertaining our niece. I can’t even write about it because I was trying not to hear it. I was trying not to think about how I would have to do the same thing in three days, when it was my time to go back home. While sitting with my dad that afternoon, he had said that he was ready to die, and, fighting back tears, I told him that even though he was ready emotionally and spiritually, according to the doctors his body needed another week or so to catch up. A look of dread passed over his exhausted face, as if he couldn’t bear the thought – and pain – of being in his broken body any longer.

That night the priest came to give my father his last rites, which was surreal. I tried to dissociate from my feelings, telling myself that this was just a prayer service, that, as his doctors said, he still had a few weeks left. I tried not to think about that, either. None of this seemed right. To further distract ourselves, after dinner my brother Lex and I watched a movie in the living room, turning Dad’s bed so that he could see it, too. We watched RED, and Dad seemed to enjoy watching us laugh at the funny scenes. Afterward, Lex slept on the futon in the living room while I tried to catch up on sleep in the bedroom. It sounded like things went a little better for Dad, only needing water once or twice that night.

The next day, Anastasia and our sister-in-law, Niika, came out to the house (they live about an hour and a half away). It was a busy day – the hospice nurses came to drain Dad’s abdomen a bit, and a representative from the caregiver company came to do an assessment. The phone frequently rang with friends and relatives wanting to speak to Dad, who was even weaker. I had to hold the phone up to his ear, and he would whisper what he could in response. By that afternoon, he was completely worn out and no longer spoke. Lex had to work the next morning, so he and Niika left, and Anastasia and I remained. The hospice nurses sent over a worker to install an inflatable mattress topper on Dad’s bed in order to avoid bedsores, and Anastasia and I had to move him out of his bed. I sat him up and had him put his arms around my neck so that I could lift him, and Anastasia came up behind him with the wheelchair and guided him into it as he continued to hold onto my neck while I lowered him. This was the man who had climbed Machu Picchu and Mt. Athos, and who, just four months ago, was sprinting through Bangkok as his daughter and grandsons tried to keep up. After I sat him in the wheelchair, I started to stand up, but he kept his arms around my neck, continuing to hold onto me, holding on for dear life. Anastasia, through tears, said, “He just wants to hug,” and so, sobbing, I hugged my father, for what I didn’t know was the last time.

The worker came in and quickly installed the vinyl mattress topper, and then Anastasia and I painstakingly moved our father back into his bed. We covered him and made sure he was as comfortable as possible. Completely exhausted, he fell asleep, and we ran into the bedroom and held each other as we cried, realizing that Dad was weakening by the hour. The hospice nurses had admonished us to give him an antibiotic so the site of his abdominal draining would not get infected, so I crushed the pill and mixed it with juice for him to drink, since he wouldn’t be able to swallow it whole. Within minutes, he vomited it up, and then he continued to wretch and vomit every ten minutes for eight hours straight, throughout the night. It was absolutely horrible. Anastasia and I took turns holding his head over to the side and then running to empty the kidney-shaped container. Several times I called the hospice nurses for help, and finally, at 2:45 AM, one showed up to give him a suppository that would stop the vomiting. It took an hour to take effect, and then we tried to sleep.

I awoke at 7:00 AM and went out to the living room. Anastasia was sleeping on the futon, and Dad’s breathing was extremely labored. I washed my face and got dressed, and then I went to sit by my father. I said, “Hi, Dad, it’s Tanya. I’m here.” Much to my surprise, he opened his eyes and turned his head to look at me for a moment. Then he turned and faced forward and looked up, his jaundiced eyes wide open. His ragged breathing stopped, and I screamed for Anastasia. In my hysteria, I thought that I should hook him up to the oxygen machine to regulate his breathing, so I inserted the tubes in his nostrils and turned on the machine. Shortly after that I realized that the oxygen couldn’t help him, and I shut it off and removed the tubes. Anastasia and I were sitting on either side of him as he exhaled his last breath. I panicked, not sure if that was really it, and I tried to check his pulse and listen for a heartbeat. Finally I acknowledged that he was gone, and then Anastasia and I sobbed our goodbyes.

The aftermath of the days that followed with planning the funeral, canceling the boys’ and my return flights, making dozens of emotion-filled phone calls, shopping for a dress and shoes to wear to my father’s funeral (because I hadn’t packed any), getting through two church services and burying him, and spending an additional week sorting his belongings and cleaning out his home is another story for another day (and this post is long enough already – sorry). In short, I made it home with many lovely international souvenirs, dozens of DVDs, a few bottles of high-quality alcohol, and one bottle of organic extra virgin olive oil. Of course I have my memories; that goes without saying. But I also have the experience of caring for my father in his final days, his final moments, and I am forever changed. In life, he taught me the value of learning and fostered an appreciation for literature, travel, gourmet food and wine, and art, which I will always enjoy. But through his death he taught me to be gracious, to keep trying, and to show love. And as I face life without him in it, I know that what I learned from him will help. And I know that he is always with me, always in my heart.

With my dad in Thailand

17 thoughts on “What My Father Taught Me”

Leave a Reply

Your email address will not be published. Required fields are marked *