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Duct Tape and Prayers – Page 10 – Life as an Extreme Sport
Life as an Extreme Sport

go

Mom, in the last 24 hours, has started to occasionally say that she can’t go. Yesterday, she was sitting up, with the help of Tracy on one side and me on the other, gripping our hands tightly – mine so tightly she left half-moon shapes in my skin. And she started saying, over and over, that she couldn’t go, she can’t, she can’t, she can’t. It became a mantra for a few minutes.

I’m sitting in my room (okay, my sister’s room, but it’s mine temporarily), listening over the baby monitor, and just heard Mom say she has to go. And Tracy told her yes, she does, and it’s okay, we’ll be okay.

It’s time for her to go.

The General

My sister is amazing. She has been my mother’s constant caretaker, day and night, for a month, watching one of the most painful things I think anyone can ever watch – the physical and mental decline of a parent. And she still manages to be cheerful, strong, calm, and collected.

It’s all her years, of course, working in oncology, at RMC, even at CHOP on the transplant project. She’s mastered that art of the distance, of the shield. Me? I’m an emotional wreck. I lost it this morning, and then when my brother started crying tonight, well, that set me off, too.

I cried into Mom’s hair as I wished her good night. I kissed her forhead, I ran my hands through her hair, I told her how much I loved her, and she told me she loves me – and I couldn’t leave. I was choked up and crying and breaking the no hard sobbing around Mom rule, but I kissed her head again and smelled her hair and told her again how much I love her, and then I told her to sleep tight and not let the bed bugs bite.

She repeated that last bit to me, don’t let the bed bugs bite, and then she rewarded me with the most treasured of things, she laughed, what passes for a laugh now, and smiled.

Tracy, though, deals with it all – and does it with amazing skill and grace. She came upstairs to sit with me, hold my hand and comfort me, and talked for a while about her thoughts about going into palliative care, and as strange as it is to picture for me, it was like bells going off at the natural fit. My sister has an amazing gift with the dying – of strength and patience and boundless love.

I envy her for that, and the stillness that seems to be necessary to do this.

I am the restless one. The one who’s job is to hold Mom’s hand, to let her know I’m here, to comfort, to assist Tracy in whatever way I can, and most of all, make Mom laugh. I’m the one thinking forward to funerals and relatives and details, things that keep my hands and mind busy. I guess it’s my own way of having an emotional shield.

I spent a lot of this last year being jealous of Tracy, and a bit resentful (and yes, she reads this blog, and yes, she knows this – one of the things I love about my sister is the fact that we actually do talk about this stuff). She got to be here, be close to Mom, doing all the things she’s done… but finally? I’m not. Not because my back hurts, or my arm, or that I’m tired, or stressed about work, or any of the numerous things. But resenting Tracy her ability to be here is like resenting a sunflower for moving as the sun arcs across the sky – she is just doing what her innate gift is.

We all have our innate gifts, and they are unique to each individual. Being upset and jealous over the fact that my sister managed to have just the right gift is just… silly. In fact, I am, more than anything, grateful. I’m grateful, and thankful, that things have worked out that my family has been able to be my mother’s caretaker. As she has gone through this process, of illness to the dying process, she has not been in the hands of strangers. She has never been in a hospital for long. She has always been taken care of by her family, and fiercely protected by them.

And I’m also grateful, and thankful, that she understands that it’s important that we – Timothy, Dad, and myself – are as involved as we can be. That we can give her water, help to move her, hold her hand. That Tracy doesn’t have to do everything, she just has to be the General leading the rest of us.

She is an excellent General.

slipping sand

I’m in Oregon.

Things got a lot worse in the time it took me to travel – I’m trying not to hold that against people, or most of all myself – I made the decision to stay until I did out of my insane sense of responsibility, after all. And in talking with my sister, I learned that really, Mom hasn’t been “here” since we saw her in August. Thinking back, I can see signs of decline even then – we all can.

That doesn’t make it easier.

Her kidneys appear to be shutting down, and there’s edema. She’s barely cognizant, period – if I’m lucky she’ll have one more period of lucidity before she dies. Hospice, this morning, said it won’t be long.

We’re going to give her permission to go tonight, when the entire family is here. It probably won’t be long after that.

I’m upstairs in my room crying right now. I had finally made it downstairs – Mom likes to have her morning getting together in private, with Tracy, plus she didn’t really sleep last night. (I’ve taken over baby monitor detail for this floor, so Dad can get some much needed sleep. I don’t sleep, so it works out well.) I just…

Yesterday she was drinking out of a straw. Today, she can’t manage that, and Tracy was giving her apple juice with a spoon. And I just lost it. And the first rule of fight club Mom dying is we don’t cry hard in front of her. A few tears seem to be okay, but we want her to be comfortable, content – we don’t want her to be sad as she dies.

Tracy was telling me this morning she was asking for my grandmother, Dad’s mom, last night. To say Grandma and Mom didn’t get along is, well, the most amazing understatement of the year, so… it was interesting, to say the least.

But right now I’m in my sister’s bedroom, which is mine for the time being, crying and, of all things, working and typing, because I need something to do with my hands. I also took half a sedative – I’m going to need to live on those for the next few days.

I am rambling. But I made the decision I was going to write about this, and everything that goes with it, because no one does. No one talks about it. People just tiptoe around and say platitudes and… my mother, my beautiful, amazing mother, deserves better than that.

under a bus

There’s been a lot of language about not throwing people under buses, and being careful in action. I learned today just how one way that expectation can really be. While I’m trying not to be pissed off, I’m furious. I’m livid, to be honest – madder than I have been in a long time.

I spent a long time talking to someone who’s found the most adorable animated bear for “giving hugs” online, and we talked about how similar we are in hating large gestures and big compliments. I realized, when talking to him, that the big gestures are almost offensive because they seem to imply there’s something special about just doing my job. And I am many things, but I am not lazy, and I have a strong and fiercely determined work ethic – once I become involved in a project, especially emotionally, or if I at all begin to view it as mine, I will work my ass off to make it the best thing possible. Because that’s what you do – that’s what it means to have a work ethic.

I hate giant expressions of gratitude for doing, what at the very basis, is simply doing my job. S~ has compensated for this by saying things like “I know you hate compliments, but you’re the [fill in the blank].” It’s humorous and gets the point across.

But when we were talking today, we realized we’re the same in that for us, expressions of gratitude are the small things – as are expressions of empathy, friendship, etc. It’s the picking up of a latte when at Starbucks, because you know it’s what the person would want or because you’re just thinking about them. It’s about giving rides to the airport, or picking someone up. It’s insisting on taking someone out to dinner as a thank you for a specific project, or a birthday. It’s leaving a bottle of wine as a gift, unsaid, because you think it will be enjoyed.

These small things for me are the things that say “I appreciate you.” I know I’m needed – it’s not arrogance, it’s simply knowing I’m good at what I do, and that I pour my heart and soul into it, because if I’m going to do something, I’m going to be excellent at it. That’s just how I am. For me, what matters is those small gestures of appreciation and shared time. Of, for example, S~ spending the hour talking to me he didn’t really have, this afternoon, when he realized how upset I was, because he knew I was upset and that talking was just the thing that was important.

Maybe that’s it, too – about prioritizing importance. You can tell me something as much as you want, but if your action doesn’t match your words…

I don’t know. I’m tired, I’m angry, I can’t lift something as simple as an empty suitcase to pack, and didn’t have a chance to FedEx the boxes of packages – which means I do it in the morning and risk losing the important parking spot, or just figure out how to get it on the plane with me. I don’t know. I’m overwhelmed, because I had the rug pulled out from under me, and was unable to complete several long lists of things I had made and needed to do prior to leaving.

Maybe in three days I’ll laugh about this. I can only hope.

Sally’s Song

I have a problem. I’m being treated for it – for at least the chemical symptoms, I’m on antidepressants, which is a good thing, since it addresses the problem with my arm, as well as that other problem. The one about not handling my mother dying at all well, or with anything approaching grace or dignity or serenity or any of the things I should be.

But I can’t motivate myself to do much of anything, other than lay in bed. I realize this is exacerbated by just finishing ASBH, and being tired from that, but I have spent the last two days alternating between sleeping and crying until I decide that’s enough and sedate myself to stop crying, which often leads to falling back asleep. I’m slipping further and further behind on schoolwork, and the fact that my stomach has once again refused to keep anything down the last 12-odd hours isn’t helping. (No pain control, no sedatives, no nothing but me, raw thoughts, raw pain.)

I don’t know what to do. I don’t know how to get around this. The prescribed antidepressants don’t appear to be doing anything – I haven’t seen a difference, anyhow, or felt one. I’m not sleeping more, if anything I’m sleeping less. The pain is ratcheting up and out of control, and I know that’s because it’s connected to dopamine and serotonin levels in my brain, which are obviously bottoming out.

I’ve mentioned this to the university adviser, who’s told me that maybe it’s time to just stop, step back, and take care of myself. I haven’t mentioned it to the other adviser, because I haven’t been able to get a meeting. I’m sure I could if I made it dramatic, if I said I think I’m starting to fall apart at my seams, but that feels disingenuous, even if it might be true.

It could be weeks, it could be months – hospice hasn’t told my family to start preparing, so there’s some time. But every morning I wake up thinking I don’t belong here right now, I belong there. Every day is a day wasted, a day I could be spending the precious little time left with my mother. My career is safe, my job can be done anywhere – as evidenced by the fact I do it from home more often than not. School will wait, but Mom won’t. Mom can’t.

I don’t even know where to begin. I’m so stuck, so behind, and the person I should be telling this to, who should be helping me figure this all out, just isn’t available. Not without some grand statements and gestures on my part, and that just makes it feel so false.

For whatever illogical, fuzzy reasons, right now I think I need truth more than anything else. I don’t need false pity or socially expected responses, I need truth. The truth of spending time, or listening, of caring. I need a truth that feels so fake when it is only given when demanded.

and i should edit this to note that so far, the last batch of meds have taken hold, so i will probably regret this when sober…