Monthly Archives: June 2011

Things That Go Thud in the Night

 

They happen at night.

Sometimes it’s a resounding thud, the unmistakable sound of a body hitting the floor. Other times, a series of repetitive thumps, as rigid limbs strike the wall or pieces of furniture. My blood runs cold. I never understood that figure of speech before, but now I do. And my heart beats wildly out of control as I run down the hallway to help my son.

Because I know, before I even get to him, that he is having a seizure. Of course, I didn’t know the first time. But from that day forward, a sort of PTSD kicked in, and now, whenever I hear thuds or thumps in my house at night, my body reacts. I leap out of bed, even out of a sound sleep (although since my boys were born, I’ve rarely slept soundly), or I bolt upright if I’m sitting at my desk or on the couch. I’m on high alert as the end of the day creeps near.

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It’s been a year now since Nigel’s first seizure. He went for six months without having another one, and then for the past six months he’s had several. They have all been very similar – classic tonic-clonic (grand mal) with loss of consciousness, eyes rolling back in the head, labored breathing, frothing at the mouth, rigidity and convulsing of limbs, lasting approximately two minutes. Two minutes is a long time to be watching your child’s body betray itself, to be praying it will stop soon, to be wild with fear, wondering if you should run and get the emergency medication which must be administered rectally for seizures that last five minutes. Nigel’s most recent seizure lasted an agonizing four minutes.

And all of them were triggered by screen time – either watching movies or working on his computer. So now, we’ve had to adhere to a new house rule – no screen time after 9:00PM. And for a sixteen-year-old who has loved watching movies all his life, that’s really hard. With all the difficulties he deals with throughout his day, he always had his evenings to relax and do his favorite thing. Now that has come to an end. He can still watch movies, of course, but he has to schedule them so they end by that time. The time when his brain starts misfiring and he is more susceptible to the trigger of images on a screen.

I tell myself that at least there are the two constants of the trigger and the time of day. I tell myself that chances are good he won’t have a seizure while he’s riding his bike to school or taking a shower. I tell myself these things, but the 24-hour EEG he had recently tells us differently. The results indicate “frequent, random” spiking, and his neurologist warns that he could have a seizure at any time of day, in any activity. Nigel started taking an anticonvulsant medication recently, and I’m hoping that as the dosage gradually increases, he won’t experience any of the negative side effects associated with it (among them, dizziness and double vision – not good for those who ride bikes and take showers). Per his doctor, Nigel can never take a bath again, something he had always enjoyed.

The diagnosis of epilepsy, which affects 25% of people with autism, has been a difficult blow for us. As with his autism diagnosis nearly fourteen years ago, our lives are forever changed. I find myself, as I did so long ago, diving into books and searching websites (at least there are those this time around!) and contacting my wonderful blogosphere friends who have lived with their children’s epilepsy for many years. They have been such a comfort to me as I navigate this new territory in special needs parenting.

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A few nights ago, I awoke to the familiar, unwelcome sound of thumping against Nigel’s bedroom wall. I bolted out of bed, somehow had the presence of mind to glance at the clock (3:15AM), and ran out into the hallway.  It’s a horrible way to wake up – shaking, adrenaline pumping, heart pounding, leaping out of bed. But worse was the realization that he was seizing in his sleep, which had not happened before. I opened his bedroom door and turned on his light. His body had stopped convulsing, which was good (this one lasted less than a minute), but he was on the edge of his bed with his arm hanging down to the floor. His breathing was heavy, but regular. I waited to make sure he was fine, and then, not sure what else to do, I dragged my still-shaking self back to bed. I tossed and turned, unable to sleep the rest of the night. I debated if I should tell Nigel and ultimately realized that I should. For one thing, I consider myself very blessed that I can tell him, that at his age and level of development, he can comprehend what I say. And I want him to know as much as he can about his seizure disorder and how it affects him.

In the morning I go to his room and sit on the edge of his bed after he’s woken up. Gently I say, “Nigel, you had a seizure last night in your sleep.” Immediately he says, “No, I didn’t.” I tell him that I heard thumping against the wall last night and came in and found him on the edge of his bed with his arm hanging over the side and his eyes moving under the lids. “No, I was just having trouble sleeping and was rolling around in bed. I remember when you came in and turned on the light, and I was just trying to keep my eyes shut so you wouldn’t know I was awake.”

Relief washed over me. Thank God! He didn’t have a seizure in his sleep. And thank God I decided to talk to him about it, and he could tell me, or I wouldn’t have known, and the worry would have plagued me. Oh, the worry will still plague me for many reasons, of that I am sure. No doubt we will face plenty more hurdles as we continue our journey with autism and epilepsy. But at least for now, sleep is still sacred, and seizure-free. I am hoping it will always be so.

(image courtesy of Wikipedia)

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 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 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