Failed-testIn the past two weeks since John’s most recent hospitalization things have been changing fast. Adjusting to the feeding tube has been a much bigger challenge than we anticipated, but we’re so grateful that we pushed to have it put in because it’s essentially the only nutrition he’s been getting since he got it. He just can’t bring himself to eat. We’re working up to 1000 calories a day on the pump but it doesn’t always work out. Sometimes he throws up the hard earned nutrition. Those are the worst days. He’s lost a lot of weight and is down to a skeletal (for his 6’2′ frame) 154 pounds as of today.

We are both struggling. He’s physically and mentally exhausted and has no reserve. Simple tasks like taking a shower or walking up the stairs completely wear him out. His always present smile has been absent for the past week or so. It’s becoming harder and harder to help him find it. Since throwing my back out a week and a half ago, I’m still feeling some pain (although I am able to function now) and am emotionally barely holding on. There is nothing I can do to ease his discomfort when he has one of his horrible chills or experiences multiple night sweats and that helpless feeling is extremely challenging for me.

Christmas was stressful, with family visits and the usual traditions feeling more like chores than joyful occasions for me. My mom was here for a week (from the 20th until last night when she left) to help out and that made a huge difference, but I still went to bed last night feeling overwhelmed with grief and worry.

John has a new node on his left groin, in the exact spot where they removed one in June and did reconstructive surgery to cover the excision site. It’s becoming infected, which is what’s causing the fevers, chills, and night sweats. It will need to be surgically removed but getting a response from the surgeons in Seattle via phone or email is a challenge. We’ll probably do what we did two weeks ago and just head over there to the ER to see if they will admit him and fit him in for surgery. Another trip over the mountain (this time with lots of snow and the possibility of a closed pass), and another few nights in the hospital.

I’m trying very hard to take care of John but I know it feels to him like I’m being bossy and telling him what to do, which annoys him. Add the fact that both of us are exhausted, and too often our interactions feel contentious. I hate that and do try never to take things personally but our relationship is changing. I am now more his caregiver than his wife. It’s a role I gladly embrace but it’s a devastating realization nonetheless.

I told my mom last week that, when someone dies from a terminal illness, they gradually fade away. It’s the most heartbreaking thing I’ve ever been through. Some days I stand at the window in our upstairs bathroom after brushing my teeth and stare out of it, trying to imagine what it will feel like, what my life will be like, once he’s gone. It’s probably a bit of a morbid thing to do, but someone told me if you can imagine what’s coming, it makes it easier to take.

I still can’t imagine how my life will possibly go on once he’s gone. It’s beyond the scope of what I can cope with right now. I’m walking around with a lump in my throat, trying not to lose it in any given moment. Blog posts and magazine articles encouraging me to plan for the upcoming new year make me feel numb. How can I plan for something I have no idea how to handle?

Right now it feels like my life is a test that I’m failing.