Coming Home

I'm home for the first time after officially moving to Northern California in December, and it's both comfortable and alien at the same time. Or maybe it was only alien before I got here, before I remembered I would know what to do when I saw my mom, and how to take care of her. I spent the day or two before coming home incredibly anxious about it all, but not really able to understand why.  I know my mom is dying, she's been dying for two and a half years, and I was there for almost every day of it, so it's not like I would be walking into something unfamiliar or unknown. But there have been changes for her since I've left, more changes than have happened in a short period of time up until now. Or so it seems. Being away from it, I've realized how hard it really is to gauge accurately what's happening - although being close to it may be just as hard, as it's difficult to realize what is changing, if the changes are permanent or if this or that change (from sleeping to eating to speaking) means that this is it, it's happening, she's really dying. Really, really, dying, which seems to me different from what she's been doing the last few years, which is more like a slow fading while living, not exactly dying. But of course, she's dying all the same. 

However, it's hard to deny at this point that things really are changing; she's sleeping more, talking less and/or just not struggling as much to talk, more easily overwhelmed and a bit more exhausted by the small things, like getting dressed. My stepdad, Jim, has very diligently kept me in the loop, letting me know there has been a handful of rough days recently that aren't like the other rough days we've seen. This is especially poignant to me, given that Jim is a master of the gloss, as in glossing over a bad situation and making it seem like everything's fine. Best example? When he flunked at EKG so badly a few years ago that the cardiologist immediately stopped the test only a few minutes in.  Just afterwards, Jim appeared at the door to his hospital room where we were all waiting, with a frozen smile that seemed to say everything was fine. Sometimes it is difficult to to discern exactly what smile he's wearing, given his psuedo Sam Elliot moustache, but the "everything is actually fucked" smile is one he holds for a longer period of time, and then it dawns on you that holding a smile for that long isn't quite natural. At any rate, he was admitted for surgery that night - his "widow maker," a major artery of the heart that someone in the medical field decided to give that lovely name, was 80% occluded and he could have had a massive heart attack at any time.

Now, I've been here for a few days, and I'm entirely comfortable being home and happy to give Jim some hours to himself everyday. I've been thinking about those days before I flew out, how my anxiety rode backseat until I was curbside at the airport and saw Ma and Jim drive up, Ma waving and half-smiling, adorable and sweet in a white poncho sweater.  I think part of the anxiety was that in the last month, I'd acclimated to having my days alone (for the most part, although many mornings were just plain strange with no one to talk to but the cat) no one to take care of, and suddenly I was headed back into that world. Or as Matt put it, "Of course you have anxiety! You're going home to see your mom, who is dying. That's not exactly fun." I guess he has a point, although I love her so much that I assumed that would wash away any other issues I might have.

I know Jim and Ma have a had a nice month together in my absence, not to mention a small return to the privacy of their marriage and living in their house alone, together - but several caregivers have either been injured or on vacation, so Jim hasn't had a lot of help. As in, he hadn't really left the house for more than 20 minutes at a time since I'd been gone. They need to hire help, and so when the two of them picked me up from the airport, I didn't even ask how they were - or maybe I did, and then I launched into my caregiver campaign.

"Well, we've done fine. I'm fine," Jim said, smiling that frozen smile.

"I know," I said. "But you can't keep doing this for months on end."

He shrugged, and then I told him I was interviewing a potential caregiver and that he really needed 8-10 hours a week of help, and it wasn't really a suggestion. He shrugged again. That was all I needed to understand that he was giving in, because if he wasn't, he would have fought me tooth and nail and hammer and screw.

Sidebar: As my boyfriend, Matt, pointed out before I left, "I know Jim will miss you and your help, but you've got to know he is the tiniest bit relieved to not be bossed around anymore." Me? Bossy? Yes, it turns out, incredibly. Especially when it comes to Ma. Within minutes of arriving, I was right back into my caregiver/advocate role and trying to control and organize everything. Trust me, it's for their own good. (And, it's working, the new, lovely caregiver, Ray, started this week.)

While it's taken me two years to leave Ma, and many false starts and claims of, "In six more months I'm going, no really, I'm going" by finally leaving and spending an extended time away, there has been a feeling of relief and freedom. However, these feelings come with them more than a twinge of guilt; as in, shouldn't I miss my mother so much that I can't eat or sleep or think? What is wrong with me?!? Shouldn't I be worried all the time, and sobbing intermittently throughout the day instead of merely teary every once in awhile?

I know Ma would shake a finger at me for feeling guilty, and probably eek out an empathetic, "Please!" but I didn't expect to feel this way.  I think part of why I do is because I have a gut-level knowledge that I made the right decision -- and it's what Ma and I agreed upon. Plus, we Skype several times a week, which helps with the angst quite a bit. Then there is the sort of giant fact that I'm finally with the love of my life after two and a half very long years. It's great, but let us remember the wise word of Maroon 5, "It's not all rainbows and butterflies, it's compromise that moves us along," and this is especially true given my crumb-bly habits and/or the fact that he feels I eat rice cakes like the Cookie Monster, and that I'm know to use a "grotesque" amount of toilet paper, but there have also been diamond earrings, a book tree, beautiful meals and many lovely, lazy days together as we both adjust. (His cat, Miles, is still adjusting, but for the record, she did curl up and sleep on my lap one night when Matt went to bed. This is nothing short of HUGE.} It is not easy when two almost 40-somethings move in together, but at moments, it's hilarious in it's utter absurdity, as anyone who's ever had to live with another person can understand.

So all of that helps in the wake of leaving Ma. Not to mention I have someone who almost every night tells me it's going to be ok, no matter what happens, and that I can go home whenever I want, for however long I need to. (This may, however, just be a rouse so that he can have his weekends back to watch football and not have to leave the house. Whatever the case may be, he is one of the only reasons I'm surviving any of this, and being with him every day is just the sort of balm I need.)

I think I struggle against or feel guilty for being relieved from my caregiving duties because I never felt oppressed during the time I took care of her -- I knew I was doing what I should have been. Not that I didn't get antsy or feel as if someone had pushed a pause button on my life; but that would be for an hour or an afternoon and then I'd have some moment with her that would remind me of why the pause was important, why the pause was the exact right thing.

I've grown so used to being with her that now, having my days to myself feels indulgent. I vaguely remember living this way several years ago, although I can't really recall then what I did with my time. Tried to write, I imagine, waited tables, daydreamed about finally meeting someone, worked out and was amused by my terror of a pug, Wally. My days are not so different now, except Wally's gone (RIP, buddy) and I no longer wait tables and I know I'm coming home to the person I've always wanted to be with. It is the only thing that would somehow make it ok to not be coming home to Ma. I lucked out.

This first trip back, I've stayed longer than I planned because Jim needed the help, and I'm glad I have. With all the changes happening, it occurred to me that maybe I should just stay, as it feels palpable to me (although I've said it before god knows) that her clock is winding down. But to stay is to go right back to where I was for two years, on permanent pause, exactly the place I know Ma doesn't want me to be. All the same, I had to ask her just to be sure.  She's managed to communicate that she feels things are shifting, that she's changing, so I asked if she had any sense of the timing of when she might go, and if I should stick around.She said she didn't know for sure, but that this phase could go on for awhile too.

"But I feel guilty for leaving," I said.

"Whoah, whoah, whoah," she said. This has become her favorite phrase as of late and it can mean anything from joy to shock to excitement, but I took this one to mean, "Jesus Christ, you have to be kidding me."

"I do, though, you know?" I said.

"Really. Really," she countered. This is her second favorite phrase, and sort of means the same as the whoahs, and I also took this to mean, "Jesus Christ, you have to be kidding me."

"Ok, Ma, I'll go," I said. "I mean, I'm not going to miss it, you know? I'll be here when it happens."

"Really, really," she said, laughing.

So it's settled, and I'm going back Thursday. Back to my future, you might say. Back to where I'm supposed to be.