Feb. 9, 2012
Not a good evening for Andrew. So much so that I decided to sleep over. But I didn't get much sleep as he awoke at 1 a.m. and wanted water almost every half-hour.
The nonagenarian gentleman next door died today. It was a bit sad as his birthday was in a few days. Andrew is still not doing that well, so I'll be sleeping over again tonight. But I'll bring our cat, Marlowe, over for the weekend as her visits always perk him up.
A really good day today – a nice change of pace from the past few days. My friend Trish visited and shared some stories of her son, Michael, which got Andrew laughing. I hope it continues through until tomorrow, as the Globe and Mail reporter and photographer will be back tomorrow for my sister's visit with her clan. I always worry about the visits from the kids, as I want them to remember their uncle in a positive way. Matthew, who is 12, is very sensitive to even the most subtle of changes and is always very concerned. But they're so good with him and have been these many months.
Woke up early and drove over to Pusateri's to get Andrew his favourite breakfast: eggs Benedict and the mascarpone-stuffed French toast. Although his appetite has been quite diminished for some time, he ate all of it which made me exceptionally happy. It's funny how the simplest things will lift your spirits when you're going through something like this. He did really well during the visit with the Globe and Mail folks (even had a small sip of Jameson), and the kids, but we had real difficulty getting him to swallow his night meds. Didn't leave the hospice until 11 p.m.
I got the call that I've been dreading for almost six months. Nadine (Dr. Gebara) called around 10 a.m. to say that Andrew's condition had changed again. I quickly threw some clothes into an overnight bag and rushed over to the hospice. Andrew was sleeping when I got there but woke up shortly thereafter, was agitated and then had great difficulty falling asleep again. The nurse who had successfully roused Andrew from his unresponsive state that morning said she was never so happy to have a patient swear at her. One of the few times I laughed that week.
Andrew finally fell asleep around 9 a.m. after being up for almost 24 hours. My twin sister, Annie, and her family were here with us for Valentine's Day. They came with the loveliest of Valentine's cards for us, and all held their uncle's hands for some time. That night, he asked for his brother Jeff and best friend Bill. Annie stayed overnight and we took turns watching over Andrew and feeding him ice chips, as he could no longer take liquids. It broke my heart when he told me he didn't have the strength to swallow anymore.
Jeff came today, which was a great comfort to Andrew. Bill was in Florida, so he sent the most beautiful note via e-mail this morning and asked me to relay it to Andrew. It took all the strength I had to read it to him.
Another long, tiring day. Andrew was really fighting sleep. We can't seem to reassure him. His strength and will to live (despite saying repeatedly that he was ready to die) is really astounding. My friend Lorraine came to spell Annie off for the evening so that she could go home for a few hours and organize Cuckoo Corner (as Andrew so lovingly called my sister's household).
At 3 a.m., I texted Father Glenn McDonald and asked if he could come by today to reassure Andrew. While Andrew said repeatedly this week that he was ready to die, he still seems afraid about what lies beyond. Father Glenn came later that afternoon, spoke and sang to him and was able to get him relaxed enough to sleep until about 9:30 p.m. I had left and was just outside the room to talk to Roger (Dr. Ghoche) about increasing his pain meds and changing his sedatives so that he would be more peaceful – what we had been using thus far just wasn't working very well – so I hadn't been privy to their conversation. Father Glenn let me know that he'd told Andrew that all the love I had for him, all the love of his family and friends was waiting for him on the other side and that it would be so beautiful. Spilled more than a few tears over that.
The increased pain meds and sedatives (now administered continuously via a pump) have put him comfortably at rest. The doctors had warned me that doing so might also mean that he wouldn't wake up again. But that was going to happen at some point and it was more important for him to be peaceful. I simply couldn't watch him in that terrified state any longer.
Our friend Paul arrived with Burrito Boyz for lunch … a nice change of pace after grilled cheese.
The "death rattle" started today. I had been advised that because his ability to swallow was impaired, the accumulation of saliva in his throat would cause his breathing to resemble that of a rattle. While I knew he wasn't in any pain, the noise was incredibly disturbing.
Around 6 p.m., the nursing team came in to change his bed sore dressing. It had gotten so incredibly bad that I couldn't bear to look at it any longer, so I left and joined my family in the hospice great room, who had popped in on their way back from a function in the city. A few minutes later, one of the nurses came upstairs. My heart was in my throat. She said that Andrew was awake but unresponsive and that it might be a good idea to come back to the room. I flew down the stairs and thought this was it, as his respirations had slowed considerably. My friend Trish, my sister and my mother joined me in the room. Trish played Gabriel's Oboe from her iPod and then sang all the hymns we had chosen for the funeral mass. I held his hand and put my other hand on his heart and read God's Garden. But he wasn't ready to leave us. After about an hour (but what seemed like an eternity), his respirations climbed back up again.
At that point, we sent my brother-in-law, the kids and my mother home. But as they were leaving, my sister said that Matthew wanted to see his uncle. I had told Annie that I didn't want the kids seeing him like this, but Matthew was so brave that I took his hand and brought him into the room. He told him that he loved him and thanked him for being such an amazing uncle. I was so proud of him for doing that – I know he was more than a little bit afraid.
Bill and his wife Jeanne flew back from Florida late that night and came directly from the airport to the hospice. Although Andrew was asleep, I believe he was aware that Bill had come and spoken to him. I was so happy that we had been able to fulfill these last requests before he died.
Annie and Trish woke me at 8 a.m. to say that the nurses felt he was close to dying because his respirations had declined again. But by noon, his respirations were back up. While I knew that the nurses really had no way of knowing for sure, the emotional rollercoaster I was on was taking its toll.
My friend Lorraine dropped by with Starbucks for us a bit before noon. We had been sitting in the room quietly talking and reminiscing for some time when I got a sense that something was different, despite the fact that his breathing hadn't changed. I jumped out of my chair, ran to his side, put one hand on his heart and kissed him as he took his last breath. Out of the corner of my eye, I noticed that the light on the humidifier clicked off at that exact moment.
I arranged to have the procession a few hours later. When we came back, pretty much the entire hospice team was there, as well as Cynthia and Doug who'd received my e-mail about Andrew and had rushed down to the hospice so they could join the procession. (I had been part of the procession when their mother Gini died last October.) I was so incredibly touched by this outpouring of love and friendship; I know that Andrew would have been so proud.
The sun had been shining that day and one of his friends commented how it was "remarkable he passed away on such a beautiful day … a sign we are to remember him for the brightness and goodness of his spirit." Another commented, "I remember thinking to myself how spectacular and somehow special the sunset was driving home from the cottage yesterday – I now understand."