Grief and Time

 Time frays around grief. At least, that's what I'm finding. It's been less than two weeks since my mom died, but it feels rather like forever. 

In November 2019, my parents visited me, my spouse, and our housemates in California for the first time. We'd been in the house a year and a half at that point, and had just finished putting all the floors in when they got there. It was Thanksgiving, and we watched the new Netflix Mystery Science Theater 3000 episodes while we ate hors d'oeuvres (the snacking rather than one big meal being a tradition I picked up from my spouse, it suits me well). Just before they left, mom told me she had been tentatively diagnosed with cancer at a recent health checkup, but that we wouldn't know details until they got the result of a biopsy. My dad had just had successful surgery to remove prostate cancer before they came out, but it was still concerning.

I think it was just after the New Year that we got the prognosis. I remember Laura and I had gone out to do holidays in Ohio, and I came back and was very sick for a day, although the fever was gone within a day. Mom let me know she had pancreatic cancer, they'd caught it by chance, but it had already spread to her lungs, so they couldn't simply remove it with surgery like they had with my dad. It also seemed to be malignant, so it wasn't just sitting there. Official estimates were about 6 months to live with pancreatic cancer, but with a chemotherapy regimen she could maybe get more time. I flew back to Ohio in April to spend more time with both my parents. When you suddenly have less time than forever to be with someone it feels imperative to see them as much as you can. I have a picture from that trip, when mom and I made my paternal grandma's sweet bread for Easter. My aunts on my dad's side swear they've never gotten their mother's recipe as right as my mom did. 

I flew back from this trip just as the COVID-19 pandemic was hitting the US. Any later and I may have been stuck in Ohio, it was within a few weeks that travel started shutting down for non-essential business. I started keeping in touch through weekly FaceTime calls just to chat. It was a long summer, autumn and into winter, not being able to see them. But the chemo seemed to be working. The cancer in the pancreas slowed down and stopped growing. Harder to tell with the lungs but we were buying time, even if mom was pretty miserable for days after a chemo session and it took a long time to get doses right for her. I remember early on she told me she couldn't handle anything colder than room temperature in her mouth, even water out of the tap was too much with how sensitive one of the drugs was making her. 

In December 2020, my brother was able to come back to the states from Taiwan with his then-girlfriend (they're separated now), and along with Laura we were able to take the train (overnight Amtrak for the first time in my life) out to Cleveland. It felt like the safest way to travel, train stations aren't crowded, and we got the private roomette so we weren't breathing around other people, and masked anytime we were out of the room. Mom was severely immunocompromised from the chemo, and we didn't want to take any chances of bringing COVID into the house, but she also dearly wanted to have us all in the house. We spent 6 weeks there (almost 2 weeks masking at home in the beginning. This was before home tests, so we got tested for COVID at the local CVS and had to wait on the lab results). But it was a really good visit. We spent a lot of time doing puzzles, and watching Wheel of Fortune and Jeopardy and Columbo (the evening ritual). And just enjoying each other's company. 

I don't remember well if I made a separate trip out again, I think I didn't go back until fall or winter 2021. Laura taught over the summer, and I don't remember taking a train alone until this past April 2022. And I certainly didn't fly. I went back again in March or April for a few weeks. Between that visit and our next trip in July (via plane. We'd hoped to visit in January, but cancelled due to Omicron) the chemo stopped working. The cancer in her lungs had only vaguely been held in check, and with it growing again, mom decided it wasn't worth the misery of chemo sessions. By July 2022, she was on oxygen. They had a noisy oxygen generator in the living room, and tubing enough to go up to the bedroom so mom could sleep upstairs at night. And a portable oxygen generator that sat well in the car so mom could still go out sometimes although she didn't like to. ("Nobody wants to be around that" she said.) But we were able to play some games, and even did a mini-golf trip, although mom had to sit for awhile in the middle of that to get her breath back. She had really bad coughing fits, which seemed to get worse and more frequent over time. My brother was able to visit again in September, and mom was still able to walk around the block with him then. 

In October, there were more and more times when mom could only do a few minutes on our FaceTime chats. Twice there were emergencies where dad couldn't get her O2 levels up and had to call in the hospice nurse (by then they'd started hospice). They put in a lift chair for the stairs so mom could still get up and down them. I had planned to take the train out myself at the end of October for a few weeks, a trip I scheduled right after our July visit. But after the second time dad had to call the nurse in I couldn't take it anymore, cancelled the train and flew out so I could at least be here.

When this all started, I had some long talks with my therapist, working on not catastrophizing, not assuming the worst was going to happen right away. Reminding myself that even if the diagnosis was terminal, I shouldn't get caught up in that and try to enjoy the time we still had together. And I think I did pretty well with that. But in October, it really started to feel like the time was near. Mom kept talking about the end, and all the preparations she'd been making. So it was difficult. I didn't want this to be the last trip to see mom. But I'm glad I was able to come nonetheless.

We had two good weeks in the house. I helped dad with dishes and getting mom around. The cancer in her pancreas had kicked in since ending the chemo, and apparently that can block blood flow from the legs, so mom's feet had gotten very swollen. It was very painful for her to stand up and walk anywhere. She managed most days with some hiking sticks, and on her worst days we pushed her around in a wheelchair, mostly from the couch to the bathroom. She wasn't eating much, and even with the coughing fits didn't want to drink a lot to cut down on bathroom trips. It was a good day when she felt up for doing anything at all really. I worked a lot of puzzles, and took apart some of the Lego sets she'd put together at her request.

After two weeks, the day my brother was able to fly in, the hospice nurse convinced us to send mom to the hospice facility for a few days to try and get the swelling down and also to get the pain meds at a good level. The facility was nice, right on Lake Erie. with a good view from her room. There was a cot in the closet that dad ended up using almost every night to keep her company, because the night was the worst time for her. And the swelling in her feet did seem to go down a bit, although with the pain meds increased she spent less time awake. My brother and I visited every day for at least a few hours, even though the road construction nearby made driving out a bit of a nightmare. 

After almost a week, we got them to release her to come home. It was always her intention to be home to pass away, although there was some mixed communication apparently and the people at the facility were reluctant to let her go. But we got a hospital bed and rearranged the furniture here for it, and she came back. Laura flew out the next day. 

The next week was good. Mom spent most of her time in bed, even with the swelling down, it hadn't gone entirely and her legs had atrophied from a week in bed already. At the beginning of the week we were able to get her in the wheelchair to watch TV in the other room. As the week went on dad moved a TV into the dining room, and we watched Wheel and Jeopardy in there so mom didn't have to get out of bed. She was still having us sit her up several times a day, but also was becoming more afraid of the night. She'd read about people passing away in their sleep, and was afraid to sleep because of that. She wasn't ready to let go. My dad, my brother and I alternated nights sitting up with her. We got a call button so she could summon us if she needed something. Things were better in the daylight, the dark of night were especially hard for her. We had a few extremely tearful gatherings, the nurse called it the "confessions" stage, where mom wanted to tell us about things and worry about us after she left.

The final week was hard. She was less and less coherent, and started having trouble hearing and understanding us. She stopped sitting up. The last night, I was on call, and slept in the living room recliner (moved to be at the foot of the hospital bed). I slept all night, except for times I'd wake up and watch to see if she was still breathing. She seemed to sleep all night too. And a lot of the next day. We'd been instructed by a nurse to shift her around to prevent bed sores. We tried to do that as best we could. She was not responsive at all the final day. That evening, my dad, my brother and I were gathered around her, wondering how long between breaths was too long, and when we could determine it was her last one, when she did breathe her last. She went peacefully in her sleep. 

The next day was Thanksgiving. She didn't want to ruin anyone's holiday, so I think that might be why she was finally able to let go. Or perhaps that was just when her body stopped working. We like to assign meaning to things, as humans. 

The following week felt like a year. Mostly just kinda doing things on autopilot. I keep a journal, mostly writing what I do every day, so at least have record that I did things. Th along weekend didn't help, it wasn't until Monday that dad and my brother met with the funeral home, and a few days after that that we got the obituary and times for the visitation and funeral. That was just last week? Like I said, it feels like a long time ago. 

Tomorrow evening will be two weeks since she died. I have hardly had knight I didn't dream about her. One night I dreamed about something I wanted to tell her, and woke up in tears realizing I would no longer be able to. Another night, I dreamed that she woke up again, and was fine. The doctors were like "yeah, sometimes they only die a little, and then get back up, it happens". Then I woke up of course. I'm mostly able to distract myself, get through the day. Sometimes the grief sneaks up on me, something reminds me of her or I realize something I'll miss (she'll never meet me at the airport with my winter coat again, for example). Sometimes I purposefully think about things, like now. And I go to my room and cry for awhile. Like now. 

Mostly I've just felt tired. 

I've been avoiding this post for a long time. Well, less time than it felt like. But I've had the tab open to the blog since mom died. I needed to write something, but I didn't know what it was. I don't think this is all. I want to write about what I remember of her. She's been there all my life. I may write about what I'll miss, about my regrets. I would like at some point to write about how I'm going forward. But for now, I guess I needed to just write what happened, as I remember it. 

Until next time, then.