Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma

Monday, August 5, 2013

Golden Slumbers

That dangerously high fever at the end of June marked the beginning of Adam's last week. He spiked a fever on that Friday night, and then again on the Sunday. Over the weekend, he lost the ability to hold his head upright, and by Tuesday his chin was completely resting on his chest. The liver pain was constant, but controlled by painkillers. He was still as stubborn as a mule, however. He insisted on coming downstairs when he should have been in bed. While taking to his parents on the phone one morning, once again trying to convince them that he was fine, he refused to sit down and he fell. By Tuesday night, it was the fifth night in a row of Adam needing through-the-night care. He was having episodes of incontinence and needed his bedpads changed, and also needed morphine every two hours to keep his pain under control. It was clear that I was in way over my head, and I needed to summon an on-call nurse for help in the early hours one morning. A friend also stayed one night to help me bring Adam down the stairs when he insisted on getting up at some ungodly hour and needed a change of scenery. By Wednesday, the nurse agreed that it was time for Adam to be transferred to the hospice care unit. Adam was so debilitated that morning, that he couldn't even lift his head. He agreed to be transferred. As the day wore on, he started to feel better, and when my mom and I weren't looking he escaped out the front door to go for a walk on his own. I yelled for mom to quickly follow him, and the hospice transport ambulance pulled up at that moment. The paramedics were quite confused, as they didn't expect their patient to be standing outside the front door on his own two feet. The last they had heard that morning was that Adam was completely bedridden, and he was. But, those past few days, Adam would go from lying in bed, needing to be spoon fed and completely unable to lift his head, to walking down the stairs on his own two hours later. It was the most incredible emotional roller-coaster I had ever experienced.

Once in hospice care, Adam felt much better. They connected him to a morphine pump, which thanks to his catheter took mere seconds after he arrived. The regular dose of painkiller perked him up and made him much more alert. It also made him feel much better than he really was. He kept asking day after day when he was going to be discharged, which was really difficult. I managed to convince him each afternoon that it was too late to be discharged home, and why don't we just spend the night and see how he feels in the morning. I was beyond exhausted, and the break I got from being in the hospice unit was priceless. My prayer group friends all created a schedule so we didn't have to spend one moment alone. At least one or two friends were always in the room, even through the night to offer company and support. I can't put into words how magnificent that was. And the hospice nurses did everything. Absolutely everything. I was able to eat, sleep through the night, and relax. Adam's parents arrived from England, and were there to provide Adam with company and cherish some tender final moments with their son. As each day passed, Adam spent longer periods sleeping. I had suspected all along that he wouldn't make it through the weekend, but Saturday morning I left to go home and cuddle the boys, get a shower and change of clothes, and run a couple of needed errands. I had remained in contact with one of the ladies who was “on shift” and she told me via text messages that Adam was alert and smiling. But by the time I had returned with Calum (who wanted to come and spend the night), he was already asleep. And he never regained consciousness again.

It was late afternoon when the nurses noticed that his breathing had changed, and he seemed to be struggling to inhale. They changed his position and increased his medication, which helped somewhat, but the nurse let me know that she thought Adam might only have 24 hours left. We all started making phone calls to invite close family and friends. Within a couple of hours, the room was packed. My parents arrived, and my sister with her husband drove three hours to get there. By 10:00pm everyone was accounted for, and Adam continued to sleep. The nurse explained to me that it appeared that he was suffering from a brain bleed, and he was deteriorating quickly. We all watched as Adam took one breath after another.  Suddenly in the early hours of the morning, I had a really uneasy feeling and felt that I needed to pray for him.  I prayed like I had never prayed before. After what seemed like an eternity, the uneasy feeling went away. It wasn't immediate, but after a short while I smelled a sweet fragrance, like lilies but much much stronger. That is when I knew with all certainty that Adam was going to be fine. I was filled with a euphoria like I had never felt. For hours I rode the most unusual wave of joy, while watching my beautiful husband slip away. I kept whispering to him that I was so proud of him, that he was so strong, and that he was almost there. I kept encouraging him the best I could. My mother-in-law suggested we play some music for him, and I found the Abbey Road album in his iPhone. It just felt right, and when “Here Comes the Sun” came on I started to cry. We always loved that song, especially the boys. It was like a family anthem to us. I leaned over and asked Adam if I made the right choice in music, and he smiled. It was so fast, but he smiled, and that was the last communication I had from him.

The late night hours of Saturday turned over into Sunday. A couple of times the nurses excused everyone from the room so they could reposition Adam, and I stood behind the bed holding his head. When they would turn him, he would stiffen, but as soon as I stroked his face and assured him I was there, he relaxed. Eventually, as the early hours of the morning passed, I began to break down. I was so tired, but everytime I closed my eyes, Adam would stop breathing for a second. I couldn't do it. No matter how tired I was, I had to keep watching him. I just didn't want to look away for one second and miss his last breath. Finally, my bladder was crying out so loudly I had to take a break. I quickly went to the bathroom, and was able to stretch my legs and revive myself. It was nearing 5:00am. I got back into the room and my friend rubbed my back for me. I was in so much pain from bending over the bed, holding Adam's hand and his head for so many hours. A few minutes later the nurse came in and swabbed Adam's mouth. She tested his reflexes, and inserted the swab deep into his throat. There was so reaction, and she assured me that he was feeling nothing. A few breaths later he was gone. Nothing dramatic. He just didn't take another breath.

In the Catholic faith we often pray to St. Joseph, the Patron of a Happy Death. I never understood what that meant until that night. Adam had a Happy Death. He was surrounded by family and friends who loved him dearly. We were all praying incessantly through the night. He listened to his favorite music. And there were even moments of joy, like when we were listening to some of Adam's favorite 60s music and a few of us just couldn't help dancing a bit in our seats. I cannot imagine a better send-off into the next life, and I am so glad that Adam had that. I'm not going to lie, and say that this was easy to write. It was awful. I have put it off for many weeks, but I really needed to do this. I started this blog, and so I have to finish it. I don't know what the future holds for myself and my boys, but I am not despairing. I am completely at peace with Adam's passing, and I am so happy for him now that he is healed and with our Heavenly Father. And, oh by the way, he is still very present. He has communicated things to me, to family and to friends since his passing that could have come from nobody else. I smell him sometimes when I am walking through the house. And I have seen bunnies. A few times. I always called him “Bunny”, never “Adam”. He was always Bunny to me. And now I know that when I see a bunny, he's here. I saw him when I went to pick out his final resting place in the cemetery, and I saw him again on our anniversary. And he is still providing for us as head of this family. We have received incredibly generous gifts that covered the funeral costs and allowed me to pay off all of our debts. Every last one. And I know that's him. He always agonized over not providing a better standard of living for me and the boys, and now he's doing it from Heaven. There are brief moments when I feel tearful, but otherwise I am fine. I miss him. But, before I know it, I'll be taking my last breaths. We all will. And when that time comes, I can look forward to being with him again. It won't be in sickness or in health. It won't be for richer or poorer. It will only be perfect.