My mom always had a garden, everywhere we lived.
That’s the first line of a eulogy I’ve already begun writing for her. Here’s one of my notes, jotted down during a doctor appointment this time:
…the clinical staff seem really distant today. I don’t blame them. I get the need to move things along etc, but god, I feel like they’re looking through me most times. Which is me, not anything they’re doing, my rational brain tells me. But this just sucks. It really really just freaking sucks. I hate this. I hate this so much. I want to go back in time and fix it before it starts. Somehow. This is wrong, this is wrong, this isn’t how it’s supposed to go. Everything sounds muted and harsh at the same time, my throat hurts, and I’m so freaking scared.
My mom’s been battling lung cancer for over two years now. It metastasized to her brain this year. I know more about radiation and chemotherapy than I ever really wanted to learn.
…She just came back in from her walk with the home health aide, very excited about spotting an alligator at the pond next door. She’s perked up and glowing more than I’ve seen her in days.
My mom is very much alive at the time of this writing. I feel like I’m dying inside as I watch her, day by day: shifting from alert to confused seemingly at random. There are no good or bad days any longer, just good and bad hours.
There’s a constant scream in the back of my head, like Arthur Dent’s early morning shriek of horror. My knees frequently feel like jelly, and I’m forcing myself to eat against a background sensation of nausea. Let’s not even talk about when the actual anxiety attacks hit.
On so many fronts, my litany of woes seem petty, unremarkable, only to be expected, martyrdom implied simply by stating the problems aloud. I’ve told myself I’m strong enough, I’ve told myself this is worth all the hassle, I’ve told myself that I love my mom and she’s done so much for me over the years that this is a drop in the bucket towards repayment.
…there’s a little voice in the back of my head, nagging, nagging, telling me that I’m doing too much. That I’m actively harming myself, walking on the emotional equivalent of broken legs.
I hate that voice. It tends to be right. It’s that wisdom inside myself that I don’t want to see, the truth that’s too painful or inconvenient to face.
I love that voice. It’s saved my life in the past. It’s pushed me relentlessly–away from bad situations, toward good ones, through fear and pain and depression, back into the sunlight.
I’ve been hearing this voice a lot in the last few months, and I’ve been ignoring it. This is the source of the scream I wake up to every morning and push past to reach sleep every night. It’s been talking, and I haven’t been listening, and so now it’s just howling at me.
….Mom’s feeling cogent at the moment. She wants to sort through stuff on the counter that my sister and I have piled there in our efforts to organize and curate the household. That would be a terrible idea, partially because she would have to stand up and I would have to stand there with her. I grabbed a pile of old paperwork and asked her to sort through it instead.
Each page is taking her about five minutes of frowning concentration. Including envelopes.
I’m dying inside, watching how hard everyday items have become for her. At the same time, I’m glad she’s distracted; now I can get work done, handling items like this overdue blog post.
I’m not going to be good enough at the end of the day. I came into this knowing that. It’s a standard I can’t meet: being everything necessary, doing this all perfectly, never screwing it up. All I can strive for is to avoid the most dangerous mistakes and make sure someone is there to take over before I collapse completely.
I’m rude and impatient, irritable and wanting very badly indeed to break All The Things into teeny tiny pieces. I do my best to be sure that Mom only sees a smile and a goofy joke. If I find myself snapping at her at loud, it’s time for a Xanax and a brief retreat to the bathroom to cry it out.
This is one small aspect of the glorious hell that is being a caretaker for a terminally ill parent. It barely scratches the surface, to be honest–there’s so much more involved. But I think it’s enough to show those who’ve never done it just how deep the rabbit hole goes. Those who have done it know what I’m leaving out, and why. Some things even the most ardent over-sharer shouldn’t talk about in a blog post like this. Besides, we don’t want to scare off the rest of you. 🙂
A followup post can be found here.
This blog post is part of the Hold On To The Light campaign. Details below.
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