Hard Things

I'm getting asked a lot these days about how my mother is doing. It's never easy to answer, because she's dying. She's pretty comfortable for all that, all of her needs are being taken care of. She has hospice checking on her every time she needs anything. She's being made as comfortable as possible with modern medicine and care. 

Most people end up saying, "That's so hard."  And the only thing I can really do is nod. There's something in my head that always says, "It's not hard the way you think it's hard." It doesn't detract from the fact that everything is pretty difficult right now.

I've always hated my emotions. They're always pretty difficult for me to access, except when I have the opportunity to process them with someone else, extroverted emotional expression seems to be one of the few ways I can deal with them. Grief always eats all my energy. 

When I first came home from San Diego after the Thanksgiving period, I had three  different friends ask me to call them and figure out the time to talk with them. And I went and walked and talked with them. My pastor was also very good about encouraging me to talk with her. That was very useful. and as much as I hate to admit it, everyone asking me about how my mother was doing and how I was doing during all of this really did help me stay in touch with where I was. Having a dozen people ask me every Sunday, having half our neighborhood ask me when we were together for a pickleball tournament, and having people ask me during our Opportunivore dinners were all practice for me voicing what was going on with me.

Karen was one of the two first friends who asked me what was going on, and I clearly remember her asking me how often I was crying or even if I was crying. She said that if I said I wasn't crying that she wouldn't believe me, but I was able to answer to the affirmative. I am crying, sometimes even when I didn't think I would be, and it's always been a good release. She was wonderful with some really good, curious questions about where I was, what I was doing, and how it was going. Her husband had died of four Glioblastoma tumors, and so she had a lot of great advice and thought, including conveying that he just couldn't talk to her near the end, he could talk with lots of other people, but the emotional loading was so much, he couldn't figure out what to say to her and that it was okay.  

My pastor was very compassionate about the fact that family dynamics on top of someone dying are just really hard. She's not wrong. That pastor had a very cool sermon about how the ways we wait for small things informs the ways we wait for large things. That how we practice with all the small things that make us wait in life, like traffic, forms, lines, or for even our tea are a means to practice how we'll wait for big things like decisions, death, or all the red tape, forms, and institutional blockades of our healthcare systems. Are we afraid or eager? Do we take the time to be conscious or use the time to complain about how someone else is taking that time away from us? Are we angry or calm? Are we grateful or bitter? Which do you choose?

The sheer number of insurance, hospital administration, financial organizations, medical staff, hospice management, health care systems, funerary services, and home care phone lines, waiting systems, records, and conversations that have to be initiated, followed through on, waited on, and made is pretty astonishing in all this. John's a saint. I've known that for a long time, but his ability to remain unruffled, assume that the other person on the other end of the line is doing the best they can, and to follow through with all his thousand and two to-do lists amazes me. I've had to do a handful of them as well, and with his example, it's been hard, but not insane making. When you pray to God for patience, this is the kind of practice I imagine She'd give you to let you grow it properly.

We've been out every month. Early December we brough Jet along and Mom was still up and about their apartment, eating Cumin lamb with us when we brough take-out back to their apartment. She got through radiation treatments well, but was terribly tired immediately after, fell a couple of times. Over the New Year, Dad finally decided he couldn't take care of her even with help. So we moved her into Skilled Nursing and put her on Hospice. John and I visited in January.

One of the amazing things was that visit was John, dad, and I taking mom out in her wheelchair to walk. We went all the way around the block of their enormous apartment building. And all along the way, I would point out flowers to her, and she, like she has for my entire life, named them. She couldn't get out many sentences or the names of the things in her room, but "Bougainvillea", "Bird of Paradise", or the Latin name for a purple flower that I didn't know flowed automatically from her lips as we wheeled her about. 

I want to remember that.

Or that when we arrived in February, Mom took one look at us and said, in clear astonishment, "Aren't you cold?"

It was what she'd always said to Jet when he was little, and to us whenever we visited from wintery Colorado coming into 50 or 60 degree San Diego. Jet always refused to put on a coat. 

But it's clearly her way of saying, "I love you."

We're about to visit one more time, before coming home for a week and then leaving for three weeks to New Zealand. We have a tour there that we bought more than a year ago, and we had enough people saying that we still had to live our lives that we decided to go ahead with the trip. I may not see my mother alive again. That was actually true during our February trip as well. In reality, that's true of everyone I see. One friend died of a heart attack one night, completely unexpectedly. There are others who have died of accidents that no one could have predicted. Still, there is an emotional freight to leaving again, and knowing that I won't be back for so long.

Her brain is starting to come apart, though, and in February the hospice nurse noticed that her swallowing reflexes just aren't connecting as well anymore. It takes a long time for Mom to figure out how to swallow and it's always an effortful thing. She's also fuzzier in her interactions with us, sometimes just going blank even when she's with us. I suspect I should find some time to be alone with her, and tell her some of the things I really need to say before I leave. I am grateful that I will get the chance. I wasn't really sure I would when we left in February. 

Yes. It's hard. But it's worth doing and worth being there with her while I can. 

One of my oft said mantras during all of this has been “I have no idea what to do. And that's okay. There might not be anything I can do. It is what it is, and I do what I can do and that's going to have to be enough."