Living With Death

We know that mom's time here on earth is coming to a close. She has has cancer for a long time but life has not changed for us until recently. She had frequent doctors appointments but I do too. She would be tired and have pain often but so did I. It has only been in the past month that we have begun to come to terms that she was actually dying. Even then... if we could just get fluids in her.... the right combinations of meds... if we just were more careful about giving lactulose, the medicine that lowers the ammonia levels in her system. We had long "war councils" as a family... planning our next steps.... researching all her different meds to see if her symptoms were caused by side effects of the meds she was on, hoping that changing meds could change the situation. If we just stayed with her around the clock... if we monitored things more carefully...if love could make her well, we would have healed her.

But cancer is a mean ugly beast that destroys everything in its path, including our hearts. Eventually, one miserable day in the hospital after another, we began to realize that the fight had changed. It stopped being about getting her well enough for the next experimental treatment and started being about getting her home and comfortable. We met with the palliative care doctor who confirmed what we had individually come to realize... the medicine wasn't taking her away from us, the cancer is. Her confusion hasn't been caused by meds... exacerbated by them, perhaps... it's because of this evil beast stealing everything from us, even our ability to talk with her. She has moments where we can see glimpses of who she used to be but mainly we just care for the small shell that used to house my amazing mama. Her eyes don't fully open much any more. She's asleep more than she's awake. She stumbles the few feet from the couch where she is more comfortable than the hospital bed... to the bedside commode sitting in our living room.

Friends, family, nurses, helpers... come and go. We leave periodically to run errands and clear our heads but we can't ever escape the fact that we are living with death. We casually discuss funeral arrangements as if we were planning an upcoming vacation. This is our life, our immediate future. I sometimes am so absorbed in this dark cloud that it surprises me to see people who are joyful or just going on with life as normal. Then I remember that this experience is unique to our village. Just beyond our life is life, unencumbered by the weight we carry. Every plan we make comes with a disclaimer... if nothing changes.

Certainly change will come... and has already come. Mom doesn't come downstairs to clean the litter box or collect my dirty laundry. I don't hear her running the vacuum or weed eater. We don't chat about what we saw on Facebook or share bits of family gossip. I can't tell her how much pain I'm in or worry over my kids with her. That part of out relationship has ended. Now I hold her drink to her lips and make sure she takes a few sips. I spoon feed her like she spoon fed me all those years ago. I sit and watch her sleep, grateful that she is escaping the pain for a few moments. I make sure she is comfortable and try to interpret her murmurs to be able to get exactly what she wants.

I remind pop to take his meds. I listen for frustration in his voice to step in when he needs a break. He is sleeping now, trying to catch up on the lost hours from last night... the cumulative loss of sleep over the past month or so when mom has needed constant close supervision. I try to line up help to do the things I can't do and feel like I can never do enough. I visit with people who come by so pop doesn't have the entire burden of entertaining on him. I run errands. I pick up things for dinner that no one has to cook or clean up. I take phone calls and message friends and family so pop doesn't have to.

There is a thick notebook that hospice brought us full of helpful information. In the chapter on "the dying process" I search through to see where she fits... some things are in the 1-3 months left section. Some things are in the days and hours section. Most things, I think, are in the 1-2 weeks left section. Bryan and Helen are coming with Finn in one week. I want her to have that one last visit with Finn. Even if he is too young to remember and she is no longer aware of who is with her... the goal of youngest family member being with oldest family member is an important event that we want to happen before she leaves us.

When she was diagnosed with the cancer in her pancreas in late 2015 I was mad. I felt abandoned. How could she leave me when I need her so much? Irrationally I felt like it was unfair that she would find relief from pain before me, that I would still have to suffer. Many times along the way I have been frustrated by the additional responsibilities I had to take on because she was no longer able. Her being sick didn't fix my back. I'm in just as much pain as before... more pain, actually. But now... as I watch her struggle I know that she has earned the escape of death. Her suffering is too great. Her quality of life has been completely taken from her. It will be a relief to know she is no longer suffering. She would be mortified by the indignities she's suffering now, the loss of modesty and privacy. She would hate to know how tired we all are. She had a brief time of awareness on Sunday and she thanked me for doing all the things I'm doing. How could I not? How could I do any less?

Thank you for your kind words and encouragement and prayer. I'll keep you posted.