One gorgeous October day after the next comes and goes, and the moon now wanes after filling the eastern sky with magnificent moon rises these past evenings. Ellen has endured increased pain and discomfort, and her caregivers adjust this and that to find the best way to ease her journey. We wonder how much longer she can persevere and whether we have done an adequate job in helping her complete what she needed to get done and in giving her permission to let go and die.

We caregivers have collected a range of tools, some of them from those who cared for our dear friend Azim in his final months earlier this year. These live primarily on the Harris-Braun dining room table and include a white binder, a purple pen, a clipboard that often is upstairs close to Ellen, the game ColorKu, and the sunflower blanket. Here’s how they serve us, in reverse order:

Sunflower Blanket – We wrap ourselves in its warm embrace when we want peaceful, relaxing time on the porch and it’s chilly outside.

ColorKu – This game provides all the benefits of Sudoku – calms and focuses the mind and helps one decompress emotionally – but also is readily tackled with two or three players who see things differently and delightfully come up with solutions for the next move. Plus ColorKu’s brightly painted wooden balls please the eye and cheer the soul. With 104 puzzle cards on five levels of difficulty – the top ones being “tough” and “extreme” – we can go for it, if we’re up for a challenge, or stick with a more soothing “easy” one. Our game skills have grown and we’re regularly tackling the tougher puzzles with success. (We’ve learned the hard way that it helps if you start with the right colored balls in the exact slots shown on the puzzle cards.)

Clipboard – The clipboard goes back and forth but mostly can be found on the bedside table upstairs near Ellen. It holds a chart on which the person at her side can track her sleeping and check timing of medications and comfort measures to ensure they are administered relatively close to “on schedule” – sometimes a challenge, as we don’t want to wake her to give her meds.

White Binder and Purple Pen – The front cover presents Key Information. Inside the front cover are Important Documents like Ellen’s MOLST, and the sections include emergency protocols, medication information, the daily care checklist, the log, the list of folks in the rings around Ellen and contact info, and more. The contents of the binder grow steadily as we add a care checklist each day and caregivers get more comfortable with writing anything and everything in the log that might be of use to other caregivers.  It turns out the log serves other purposes, one of which is to help an individual caregiver decompress after time with Ellen, even dump out one’s thoughts and feelings in a cathartic way.

Oh, and then there’s Being Mortal: Medicine and What Matters in the End, by Atul Guwande, a timely gift from Birdie to Ellen and Eric last year, with Ellen’s penciled notes throughout.

 

 

… Spee over to Eric …

One thing I struggle with is that “charting” (of sleep times and med times, and other details of care) creates a map of a territory. On the positive side, this map helps us navigate the territory of caregiving, of sharing and coordinating information among caregivers so that, for example, we don’t give Ellen too many or too few meds. But, all maps have the property of both being incomplete and also modifying and feeding back on the territory they map. For example, the map can distance us (as caregivers) in sometimes subtle ways. One way is simply in that we spend time on the map that we might otherwise spend observing or engaging with “territory” itself. So in the most pathological case, because what we measure for this map is sleep and meds and a few other bodily functions, then the map could come to fill our entire consciousness of what Ellen “is.”

I find myself needing to tread this one carefully, holding the map for what is is – a tool – but always focusing on the territory first. For example, where/how does our map indicate our progress, as caregivers, in letting Ellen go?  Does the map itself, in fact, act as an unwanted tether? All territories, despite all the maps we make, remain a mystery.  Thank goodness.

Here’s a famous picture of Ellen using midwife caregiving tools.