The entry title comes from a song by Death Cab for Cutie called "What Sarah Said," and it is a special, poignant song to me, full of incredible depth and sadness. The official video is worth watching, if you have the time. And also if you need a good cry. This is a good excuse.
"I'm thinking of what Sarah said. That love is watching someone die. So who's going to watch you die?" Whom do you love enough to sit, over time, over days, weeks, months or years, and watch them die?
In essence, we're all watching each other not just live but actually die.
And in truth, I'm watching someone die.
She has fought it good and hard for quite some time. She lost her husband unexpectedly in December 2011. He struggled with lung diseases and COPD, and his loss was a big blow to her and her ability to fight.
She rebounded quite a bit, she had surgeries, chemo, surgeries, stints, chemo and all sorts of things. Last year things got bad, and this spring her doctors ordered her to go on a family vacation with her sister and kids and everyone, and go enjoy herself.
The family went on a cruise in early July. She had a wonderful time, ended up back in the hospital for a little bit, and then released back home.
I didn't realize that she was basically told around then that she had the three months to live. I knew it was terminal, and I knew that the end was near, and that hospice was involved at home. But... that basically brings us to "now" in the three month span.
We were going through our own horrible turmoil, with looking for a place to live. On the last day of school in June we had to go to the superintendent's office, and Marie works in the same building, so we stopped in and visited. She looked fantastic really. Working, happy, smiling, laughing. Getting things done. It was so wonderful to see her, and she gave us so much love and hope with our situation and the fight we were in.
Once the packing process started, after she was home from the cruise and out of the hospital, I talked to her on the phone a couple of times. I knew she was home, I wanted to go visit. I made a few meals for her and her sons. I never seemed to connect with her being there at the house, just the boys. The youngest one recently got Eagle in our troop, and is a really funny kid. He's about 19, and I like him an awful lot. So we had a lot to talk about and I tried to really communicate to him that he could always turn to me and to Doug if he was feeling upset, frustrated, angry. We'll be there for him.
19 year old boys don't pay that much mind, really.
And then the moving started. We moved the next town over from where we were living, and the road to get there goes right by her house... so 10, 15, 20 times in a week I was driving past her house and saying "dang it. I gotta stop and see Marie."
"Doug, please remind me to give her a call later, okay?"
"I'll try, but we're kind of busy."
"I don't want us to be too busy. I want us to make time for her. I don't want to be selfish and focused only on us, when she's dying."
"It is okay for you to be selfish."
"No it is not."
"Do you want to stop in now? I'll pull in the driveway and we can go visit now. If that will make you feel better."
(looking at myself covered with dust and dirt and crap and probably infected with the hantavirus from all the mouse poop in our old house...) "No, I'm not in good condition to stop in and just visit like that."
One day we drove by and there were seriously 10 cars in the driveway. I groaned. "Oh no. Look how many people are there, Doug..." I wondered if she had passed away on us. I emailed a friend and found out that she was still alive and at the house and everything was going as okay as could be expected. Breathing a sigh of relief, I knew I had a touch more time.
Finally, this past Tuesday I talked to her son and told him to let her know I'd come by in the afternoon. I had a doctor's appointment, and would swing by on the way home. I got there and she was dressed nice and groomed all pretty and waiting for me. I felt like a filthy grubby schlub in comparison to her, and smiled and hugged her.
"Thank you for not dying on me," I told her. "I have been so busy with moving and packing that every day I was beating myself up for not getting over here to see you."
She laughed and said she was waiting to see me. She was so happy to see me. And I was so happy to see her.
We talked about so many things, and she totally lit up when we talked about the Boy Scout Troop and how the guys were doing. She wanted to hear all about Geoff's summer camp experience, and the new Sea Scout program. I told her about Schooner Fest and she just beamed with joy.
I asked about her cruise, since I hadn't seen her since the end of June, so she filled me in on all the details. The food and the music and how she didn't care for the rocking of the boat. It would have been nicer to do all these things on solid ground, but it was wonderful to be together as a family.
"And who is going on your cruise with your family?" she asked me.
And here is a lesson for everyone. Right now.
A while back, when Doug's grandmother was dying, we talked about "actively dying" and how the body and brain all do weird things. Especially the brain. Brain chemistry changes, memories shift and change. And sometimes personalities change. Beautiful, kind people turn into ornery bastards. People who maintained a secular or atheist life suddenly cry for Jesus. Not as a death bed conversion, but because their brains are doing wonky things (okay, yeah maybe a little bit of that good old Holy Spirit thing happens but... you know. Maybe not).
So I knew not to argue with her that we were not going on a cruise. I knew to say "Oh, I don't think we're going this year. Money's tight with the move and everything... so we're gonna skip it."
She thought that was a good idea, and then we talked about the new apartment.
It was an easy transition... because I knew how to play it. She doesn't know I'm not going on a cruise. She was talking about her cruise and then her brain just said "oh, She's going on a cruise too, right so yeah let's ask okay purple monkey dishwasher shiny things."
Please always remember this, dear reader, when you know someone in hospice, or someone dying, that sometime they will say goofy things to you. Don't fight with them. Go with it, sometimes ask them for some clarification, and maybe they'll realize what they're saying and correct themselves but if they don't...
no harm, no foul.
We had a wonderful two hour time. We talked about what happens when she dies, how she doesn't want to die in the house because she doesn't want the boys to see her like that and think of the house as the place where their mom died. We talked about all sorts of arrangements. We talked about whether or not she wanted a hospital bed or her own bed. She was a touch angry at hospice because they won't let her go INTO hospice, but they're keeping her at the house. She said that it is because she isn't in pain. If she was in pain, and her pain was not manageable, she'd be admitted to hospice. She wants to be there, not at home. I told her to take things as they come, she might just get her wish. I told her that I was so relieved she wasn't in pain. Pain sucks! Her only real symptoms are exhaustion and nausea. She doesn't eat, she's gone from a size 2x to about a size 6 (no kidding). She's basically wasting away. Her squinty smiling eyes are now huge giant big beautiful eyes, all because her face has ... gone. For lack of a better word.
Her hospice nurse came for a check-in, and was there while we were talking. We talked as if she wasn't there. And the nurse just sat and smiled at our laughter and gibberish. She told me "you can come visit all my patients if you can make them laugh like this."
Nope, sorry lady. Just this one.
So, I'm watching someone die. All the committee members and the moms in the Troop are talking about MassJam weekend, and making sure her son can go on the trip if he wants to. We're talking about doing shifts and spending time with her so she isn't alone, so the son can go be with his dudes and have some fun. We want him to have that, and to be honest, some of us need that time with her.
I'm watching someone die. And I'm putting a strong and brave, assured and confident face on it. I'm laughing, I'm trying to make her laugh. Inside I know we're all terrified and crying though. But... Love is watching someone die. And I do love Marie. Very much.
Today is her 64th birthday. Most likely her last. And yeah. That's some heavy shit right there.
I'm watching someone die.