And then it was over...

This week I saw a photo series about working Moms – many of them in business pumps or attire, stumbling in the door – staring at a screen – brow furrowed and clearly multitasking.

This led me to think, if there was a photo series out there about Alzheimer’s caregiving, with a particular focus on the sandwich generation,  I would contribute a photo of myself at 9:30am on a Sunday morning. The kitchen would be strewn with messy dishes from a weekend breakfast. I would be blurred, slightly, with Asher in the foreground -- just starting to whine and lose interest in a toy. Meanwhile I would be hovered over the trashcan, furiously pulling off every godforsaken tab and bitterly punching out each of the twenty-eight pills from the blister pack for the medicine for my Mom’s clinical trial study. The picture would not capture that I would be cursing the fact that the packaging for these pills can’t be more user-friendly, bemoaning this “thorn in my side.”

It’s of note that Mom would be in the shower – I specifically chose to fill in her pill bottle on Sunday morning when she’s in the shower, even though this time window leaves me scrambling because Charlie’s already left for church, and thus my hands are full and my time is stretched. But I have picked this window because I feel a sense of urgency – I want to get her weekly pills all filled out before she asks me if it’s done for the seventh time and I inevitably explode, causing her to meltdown in tears and subsequently feeling gut-wrenching guilt myself. I also need to do it while she’s in the shower so she’s not standing over me when I do it, asking some other round of inane questions that push me over the edge. And lastly I have to do it on Sunday morning because if I wait until later, then the moment will pass and I will forget and she will miss her dosage of medicine for that morning.

Now, flip back to this afternoon, and imagine my shock when, out of the blue, at the end of a four hour appointment today, I was informed that the extension portion of her clinical trial study was over. 

Done. 

Finito. 

No more clinical trial study pills. No more blister packs and harried Sunday morning moments of pure resentment and frustration to anticipate.

This chore that I’ve loathed for so long and that captured the epitome of my frustrations in caregiving was pulled out from under me before I had the time to look up from my iPhone as I’d anticipated entering the next appointment. It also happened before I had the time 

• to request/(plead?) for an exception to continue on the medication between the period when the trial has ended but the medication will be introduced to the market
• to contact Mom’s normal neurologist to increase her medication level for a medicine she had to have tiered down while on the study
• to mentally grapple/map out next steps in advance.

 This isn’t surprising. In our roles as super-caregivers Charlie and I often find ourselves behind the curve in circumstances where we had intended to ask proactive questions, plan ahead and advocate for the best possible option. Week 72 of our clinical trial was almost fated to sneak up on me.

But now here I am, facing a blister-packless Sunday, and I am experiencing a very real flood of emotions 

• of a renewed reminder that the things we often bemoan are actually ways to forget how privileged and lucky we are (in this case, that we were able to get into such an accessible and potentially helpful clinical trial).
•  of the renewed anxiety and underlying questions about what to do next in the face of this illness. Now that this clinical trial is gone – what can I do to try and feign control and power to fight a (presently) unbeatable illness? What chirpy line of update will I include in my next Walk-to-End-Alzheimer’s annual update?
• of the bleak and shitty reality of the trajectory of Mom’s illness

I’m in a bit of a haze as I realize how much barren doctor’s office walls and bleak fluorescent lighting have been a barrier from impotence, and from processing some of the deeper meaning questions that I’ve previously just burrowed behind a wall of blister-pack directed, Sunday-morning angst-rage.