So not to distract people from a very good advice post on what website hosts to use I figure I will just write up my own feelings and get it out into the ether - which always helps. GT - you have been such a useful place for me. I lurked for years in college before creating my own account at last and I am so grateful to be part of the community and be able to talk about both the positives & negatives in life as they happen and be able to contribute where I can - although I feel like at times I just am glad I can be part of your lives in a tangential way.
So, as I mentioned in a previous blog - Dad has cancer. We did a huge surgery over the summer that had him in the hospital for 42 days. Post surgery he couldn’t do chemo anymore but they were trying an experimental auto-immune drug to handle what was still left post surgery. We discovered that the drug didn’t work, his cancer markers were back up and he had new tumor growth (which because he’s a stoic person hadn’t mentioned he could feel/hurt until it was confirmed via medical tests).
So that weekend when we found out, we sat down with a hospice representative and went over their services and what his new regimen would look like. Hospice seemed like it was going to organized and consistent and would provide counseling for all the family members up to a year after he finally gives up the ghost. We figured we would tell the extended family after Christmas - so as not to spoil the holidays for anyone.
Wednesday morning -December 14 he wakes up, gardens, we text back and forth doing the daily word scramble in the newspaper together (its our little habit we picked up from when I was on family medical leave). I mention I am bringing over a plate of cookies another friend of mine baked for them. I come over and he’s home but the rest of the family is currently out. He says he is in more pain today and goes to bed after a bite of pizza and a single cookie for dinner.
Thursday morning - December 15th. I get a text from my mom to come home as soon as possible because he’s in a very bad way right now. I manage to leave work an hour in with my supervisor saying just go (which I didn’t because I hate just abandoning my clients, so I emailed him a list of people with their info and tentative appointments booked for them). Dad’s... not eating. Not drinking. Unable to really move on his own. Stays in bed all day barely able to wake up or focus on anyone. Family flocks to the house - all his brothers and sisters trek out and a few cousins of mine too. Friends of the family descend with food and hugs and tears. I find it odd that my dad’s friend were more openly emotional and take charge than my family members were.
Friday - Sunday December 16-18th. This was basically the next three days. I finally said I have to go back to work on Monday - I can’t be on a deathwatch. Mentally and emotionally I can’t. I, like my dad, need to be active or I will go insane. All I did was sit by his bedside or curl up in bed with him and watched him sleep and breathe. I helped my mom move him. I kept the family members and friends out of the room when he needed rest. When he was lucid enough, I helped him stand up - because he has no muscles to support his frame - he is so emaciated from not eating for the past week. I was up every night for a watch shift from 1 am - 4am meaning I go about 5 hours of sleep every night if I was lucky.
We wonder if the hospice people missed something. They were as unprepared as we were for this sudden shift. The doctors and nurses thought we had at least 3 months instead of 2 weeks when they made the pronouncement. We made them take a test yesterday for infection to get him on antibiotics. Because even though he’s transitioning because of something we all missed, he still deserves to be comfortable.
I can’t imagine how sleep deprived my mom is. She will only eat if I bring her food and force her to eat. He reaches for her hand when lucid enough. She hold his hand even if he isn’t. Since I am at work I can only hope my brother and her friends are seeing that she gets more than one meal a day. Every day is deathwatch. Every day could be the last. But isn’t. And thus we have to start our goodbyes over again, for me, every morning because I am staying with them which this happens. And every night before we all go to bed, exhausted.
We’ve been going through photos. We’ve been playing his favorite music. Sometimes we pretend he can hear it and is reacting to the music, not to whatever morphine induced dream his brain is conjuring. Friends have been bringing dinners and lunches, snacks and hugs. We try to not interpret his gasps and grunts as words because we just don’t think he’s there anymore. I don’t. I don’t think he’s in that body anymore, everything that’s working is just on autopilot. His body is fighting so hard to stay alive at the same time that it’s trying to give up.
I tell him every time I leave, and its difficult every time:
“We will be able to survive without you and we will not forget you. You’ve been so many things to so many people and they will always keep you in their heart and minds. Please, let go, because you are hurting yourself and everyone is hurting around you. It isn’t selfish. I promise.
I will miss you every day. I don’t want you to be in pain anymore, so I understand if you have to leave. You will always be my idol. I will always be your daughter. I love you.”
Sometimes I manage to say it all. Sometimes I only get through part of it.
But I think it. Constantly.
Thank you for those of you who could stomach this read. I know that many of us have gone through the death of a loved one. Thank you for letting me share this when I struggle to share this with the people around me.