Saturday 13 March 2021

RINGS OF A PLANET: Caregiving in a Natural Disaster

Last year, my friend and colleague Vickie Cammack and I co-wrote a piece about caregivers as first responders in natural disasters. We wrote: "Canada’s ability to successfully respond to the climate crisis depends on the freely given, natural care provided by family, friends and neighbours. These caregivers (distinct from professional care providers) are the true first responders and the bedrock of our individual and collective safety and security."

In February of this year, a terrible winter storm caused widespread power outages in Texas. Diane Stonecipher is a resident of Austin and this is her story of caring for her medically complex son through life-threatening cold at home, without electricity. Thank you for sharing, Diane. I am so glad you are all OK now.  

The thing about living on the edge is that it becomes a place that you adapt to. You do not always feel the fragility on a day to day basis until you are pushed beyond the boundary of it. This rarely comes with a warning. Being on the margins, on the edges of what people can see, takes many forms. For purposes of this writing, it manifests as the edge of medical/cognitive fragility. When you are medically or cognitively fragile or you care for someone who is, the entire society functions on a parallel plane to yours. The worlds are blended in parts, but make no mistake, the dominant place is on the periphery. It takes a lot of energy, focus and intention to stay balanced out there. It also takes resources, support and some luck. 

When COVID arrived, the previously somewhat comfortable edge, became precarious in relation to supplies and physical proximity to others. Words I had never uttered, supply chain and food scarcity, became full-time obsessions. My usual subscribe and save subscriptions were gutted; no diapers, wipes, dry pads beyond my already impressive stockpile. Medication shortages with dire consequences as well, access to nourishment that cannot be readily substituted for. I had no place to put an extra fridge and no energy to scour any harder than I already did. In the space on the edge, which is already narrow and slippery, any glitch has repercussions. That said, acclimated to the edge, one relies on resourcefulness, minimizing expectations and a measure of resignation. 

In a bit of irony, as we righted the circumstances and hunkered down in the pandemic, I was feeling a little less isolated and soon, settled on the ledge of the edge again. When the winter storm warnings came for snow and cold temperatures, my concerns were mostly keeping the house and our medically fragile son warm. My work would be cancelled, my husband could work from home. I had food, water, plenty of batteries, candles, lanterns and blankets. We did all of the right things for our pipes and plants and went to sleep amidst gently falling snow. 

At approximately 3:00am on February 15 the bleep of the power cutting off woke us up. Not too concerned at this point, we both went back to sleep and I awoke @ 4:30. There was a lot of snow, so it was oddly “light” outside. Nonetheless, there was no heat and the house was cold. There was water pressure enough to put a kettle on the gas stove. I made coffee, had cold milk, energy bar and scanned the street for lights anywhere. At that time, there were lights behind us, but not to the south of us, so I had hopes that this was a temporary outage, and thankfully, the snow had stopped. I made our son’s breakfast as best I could with light from a camping lantern and lamented the dead computer, land lines and cell phone that needed charging. 

 At first, it all just seemed inconvenient. I would not be able to put his warming blanket on him, heat up his food, turn his music on or use the Ipad. Obviously we were not leaving the house; we would adjust to the cold and quiet and get the phone charged to see what was happening. Soon enough, it was obvious that this outage was not temporary and the end of it was at least a day away. Immediately I was making a mental inventory of what we would need to provide our son’s care and keep him warm. Feeding would be the same, toileting more challenging than usual, without water, no bathing, and no end point. The house continued to become colder and the forecasts for the next several nights in to the single digits. 

I was freezing, but without body fat, ability to move and the temperature regulation center in his brain, our son was our singular focus to keep him warm. Our neighbors offered a room in their house and we toyed with the idea of moving him and a large amount of stuff over there, just to be warm. Alas, they had no water and their power subsequently went out as well. We thought about trying to find another place to be, where there was power, but the roads were not passable. The following day, learning that the power was not returning, the roads slightly improved, we thought about it again. The temperature in the house was below 40 during the day and I feared hypothermia. We gathered his food, his meds, his toileting items, his foams for sleeping and a bowel program and thought about risking it. What if we forgot some thing and could not return? What if pipes busted where we went? What if our own pipes burst while we were gone? Looking over the 2 pages of supplies written on loose-leaf paper, we decided to stay. Too many unknowns for a 50/50 shot at success. 

 Once that decision was made, although some doubt persisted, we sunk in to what we always do, put one foot in front of the other. We had the environment that housed our usual rhythm, flashlights, a borrowed sleeping bag and all of the supplies used in any day. The house was cold enough that we lost nothing from the fridge, we kept the pipes dripping and had a gas stove to light. Our radius was about 400 square feet and we maximized its utility. In a sense, we were lucky because our son eats pureed food from a spoon and drinks from a syringe. He does not require deep suction, just a bulb syringe and CPT. He does not have a tracheostomy. 

For our son, lack of heat is life threatening. My toes and fingertips were numb, layer upon layer, there was no getting warm. His daily needs did not let up due to a power outage. He still needed to be moved hourly, was incontinent, had a bowel program, needed changing and 6 small feeds. He still had no way to understand what was happening and for someone whose preferable ambient temperature is about 70 degrees, adjusting to 34 was an all-out effort on all of our parts. He stayed wrapped in a sleeping bag, during the day, warm but unwieldy to transfer and feed. Five blankets at night with my husband, only after the fact, admitting to his fears of smothering. No nightly warm bath; the first time he has missed one of those unless he was in a hospital. 

Days and nights blended together and the only redeeming thought was that sooner or later the power would return. As each day and night passed and our fatigue grew. We knew for certain that our utilities would eventually be restored, hopeful that no pipes would burst in the meantime, we let time lose its grip. In this space, the capacity for gratitude became an essential tool for sanity. When this was over, we would return to our normal place on the edge. The place we have acclimated to. I could also see and feel the suffering of all who would not even have this comfort. Those in war-torn countries, refugee camps, homeless, under-housed, crowded beyond capacity; we were indeed the lucky ones. In our own city and state, people would die cold, alone and in the dark. Family and neighbors would feel helpless and police and firefighters in positions of deep sadness, I suspect. 

I hope that something like this does not happen again, but I doubt that is a given. If it is not a winter storm and power failure, it will be something else. There are many, many people living on the edge. It is not just that we don’t see them, it is that because of that, we don’t adequately address their needs during these circumstances. Just something simple like someone asking why we did not have a generator, as if that would have mitigated the situation, was almost hurtful. 

The thing about the edge is that it is not a fixed place. More like the rings of a planet. The only view you have is the one that you see. To steal the phrase, a view point is just a view from a point, is most apt. With all of our technology and inordinate wealth of all kinds of resources, we need to remember that the rings are part of the planet.

1 comment:

AV said...

This was a very powerful and incredible story. Thank you for sharing. As a fellow Canadian, we only heard the high level news updates of the Texas winter storm but individual stories like this remind us of just how harrowing the effects of it were on the communities.