Disclaimer--I am openly talking about Dad's death in this and possibly the next several entries, so feel free to skip it if you want. It helps me to write about it and get it all out of my head.
When a family member gets put on hospice care, they give you a booklet on what to expect in the last few weeks of the person's life. I was terrified to read it and put it off as long as I could. Yes, I was in denial that Dad would eventually be leaving us, but even the hospice nurses even said that Dad still had a few months left in him. I am not quite sure who it was that told me that I should read it, I think it was my uncle Carl, and so I trusted him and sat down with the booklet.
I was amazed to find that death from disease follows such a exact plan. I was skeptical with each thing I read, until Dad followed the same path. For example, a few days before a person dies, they stop eating. This one was hard for me--In the last few weeks of his life, I fixed Dad a lot of his meals and was responsible for his medicine and liquid intake. A woman that we met to help us through the last few weeks told us (before we got the final diagnosis) that food is medicine and we have to keep it up in order to get stronger. So when Dad stopped being interested in food, I was freaked out, and tried everything I could to keep calories in his system. I would wake him up to give him a drink of Boost, then he would drift off, and once he did, I would wake him up again so he couldn't argue and therefore would take another sip. The last full meal he ate was scrambled eggs and ham that Fuzzy made him, and the last solid food he ate was his mother's lemon cake that he loved that she had made for him. It was so sweet to see him enjoy the cake for the last time, and I love that his last food was something that he ate even as a little boy.
In the last few days of life, the patient stops being able to respond to things, but he is still able to hear and process what is going on around him. We had so many visitors in and out of the house (sometimes we had to tell people that they could not come in because it was so overwhelming and we needed some calm and family time) and people from near and far stopped in to say their goodbyes. When Dad was conscious, he loved that, but when he wasn't it was kind of strange to see people just standing over his bed talking to each other. The nurses kept telling us "Talk to him, he can hear you" and it pissed me off when people talked to him in baby talk or like he didn't understand. When things would quiet down I would sit next to him and ask him how annoyed he was when people did that. We played him Jethro Tull music and the soundtrack to Once Upon a Time in the West and we played him "I Can See Clearly Now" the song he had requested to be sung as his funeral. We would sit around his bed at night to be with him, and usually, once a night, he would re-gain consciousness and we would talk about what had happened that day. The amazing thing is, he remembered all of it--every last bit. He would tell us how surprised he was to see old friends, to ask who the people were that he didn't know, he would tell us that he heard all of the beautiful music we played for him. Once he would wake up and we would talk, we were usually able to rest easy and get a good night's sleep, because we didn't have to fear that he was going to die overnight. One time he even woke up and told us that he could get some rest if we weren't all sitting around him talking to him. We all got a good laugh out of that one.
The first thing the hospice nurses all tell you, and then tell you over and over again is that you should make sure you tell the patient that it is ok for them to die, since so many people hold on until they know it is ok. I certainly understand where this comes from and I think it is a sweet thing to do, but to me it walks such a fine line between letting them know it is ok for them to go, and pressuring them and making them feel like they should go. Since we didn't know exactly how literal the "final steps" were, everynight we thought he was leaving us. It was awful, night after night telling him it was ok for him to go and to not be afraid. But then, he would do that waking up, and we would all be able to go to bed. Night after night, me, Mom, Christopher, Linda, and Memaw Reid would go through this process--it was grueling. But when the actual night came upon us, there was no doubt what was going to happen. A nurse came over to check his vitals, and when she came out, she said "you are right--this is it."
(to be continued)