I have decided the only way I can get Max's last days out is to write them day by day. I originally thought I could write the lot in one go but I can't do it because so much happened in such a short amount of time. I don't think I could cope emotionally and that is what has refrained me from even getting started but I really need to write this down. So day by day it is.
Friday 7th May 2010
We had installed the hospital bed at home a couple of days prior. Max was finally a little bit more comfortable after sitting and sleeping in the his new recliner chair for almost a week. The recliner gave him bed sores and he was in a lot of pain, between his sores his broken humorous and his usual tumor pains he was very uncomfortable.
I had set up a baby monitor in the bedroom so if Max needed me I could hear him call out. He had become very, very breathless so speaking loudly was an effort. That morning it was the usual routine of the nurses coming over to check on him and give him a sponge bath. Since he was now in the bed he was a lot harder to maneuver so two nurses came to sponge him down. He got on well with them and knew them quite well since they had been visiting him at home for many months now. As the nurses washed simultaneously Max joked with them saying that he felt like he was in a car wash. They all had a laugh.
During the week it was decided that Max would no longer take oral medication instead he was going to have a subcutaneous medication pump inserted. He wasn't managing getting all his pain medications down any more. The day before I had filled his pill boxes with his meds and after completing them I knocked the whole thing over, there were 100's of tablets all over the floor. I was really glad I didn't have to do them ever again. So the nurses inserted the pump in the morning but we needed to wait to get a palliative care Dr to come over and sign up his scripts and then get them filled. The house was filled with people all day coming in and out, that was what it was like the last few weeks. Drs Nurse, counselors, people dropping off or installing aids, oxygen tanks etc. I had also reached out to my family and friends and asked for help by this stage so I had extra hands helping with Bubbaboo whilst I spoke to Dr's or nurses or had to run around getting scripts filled etc. By the afternoon I had his medications and the nurses came back to administer his meds which was mainly morphine, anti-nausea drugs and something to help him sleep. If he needed any top ups I needed to administer it, so I had the lessons whilst my mum and sister looked after Bubbaboo.
That evening my girlfriend M came around with some dinner and to help out but the evenings where ok once Bubbabo was down for the night. So she sat and had a chat to Max whilst I had a break from him. He was very demanding and kept needing me to shuffle him up or down or help with this or that. You can imagine how frustrated he was when he had only the use of one arm and very little strength left to lift himself in the bed. I sat in the lounge room and could hear their conversation through the baby monitor, talking about music and realising that they appreciated the same kind of music a conversation they obviously had never had. Max was struggling getting his words out, his breath was so laboured but I knew he was really enjoyed having a chat. As I listened to them talk I was envious because I hadn't been able to have a conversation like that with him for weeks. Because all I could do was help him with this and help him with that and we could never just have a chat because it always ended up with me trying to make him comfortable. They started talking about holidays and Max was showing M our holiday photo book of Thailand, our best ever holiday together. I had walked into the room when M asked Max what the best thing about the holiday was he replied "that apart from the food and the beaches the best thing was definitely having Vee with me to share it with". I smiled at him and blew him a kiss.
Max was becoming quite drowsy now that he was on the medication. He seemed to have had the best night sleep he had had in quite a while, which meant I had a decent nights sleep too. It had been a long while.