Disaster Preparedness– ready, set, GO!

Disaster Preparedness—ready, set, GO!

When it comes to being prepared, I’ve yet to meet a complex-needs caregiver who wasn’t on their A-game. We know to be ready for everything, including the least excepted scenarios. We’ve seen it play out many times: if you didn’t pack a spare g-tube button, the current one will almost assuredly start leaking. If you think “but we haven’t had a stomach bug in ages!” then the emesis bags will be buried and out of reach when you need them most. Didn’t pack the back-up antibiotics? Might as well find the nearest Urgent Care on your route now.

When it comes to the most unpredictable of scenarios though, natural disasters are ones that we cannot afford to overlook. Because the needs of those we are care for are unique, and the stakes are often so high, emergency preparedness now can help everyone feel a little more ready when disaster arrives on the doorstep. Here are some tips we’ve found helpful to get prepared and be ready to go at a moment’s notice. Note: our vessel of choice is a rolling carry-on suitcase but a sturdy duffle works too. It needs to be the right size to grab, pack and carry easily and sturdy enough to hold up. Our bag is kept in front hall closet and clearly labeled “EVAC” so we can grab it without thinking and head out. Consider creating a calendar reminder to rotate out supplies occasionally, so expired medications or outdated supplies don’t create issues.

1. Choose your own (mis)adventure. Plan for the most likely event where you live. Earthquakes? Wildfire? Hurricanes? Giant man-eating chickens? For us, the most likely threat is wildfire, so we have packed according to how much (or little) time we would have to leave, where we would go and how long we would likely need to be gone. How and what each person needs will depend on these factors. If you have a meeting place or end destination in mind, make sure you communicate it. Others in your network may be able to meet or help provide assistance wherever you need to go. If your natural disaster scenario is one that likely has you staying home (during an ice storm, or loss of power event, for example) then adjust this advice accordingly but keep in mind what you may need to ride it out where you are.

2. Make a list. And check it twice. What do you or your child use every day? Formulas, supplies, medications, devices and equipment? Write it down as you mentally walk through the day or physically look through your supply closets. If you don’t have extras that can be packed away, consider adding a sticky note to the outside of your bag so you know to grab those few things too before you leave (things like additional feeding pumps or mechanical ventilation aren’t often given out as backups and unless you’re lucky enough to find a reasonably priced spare, many do not have the luxury of duplicates). If you don’t have extra medications every month, consider asking your providers to write more than you need for a few months to pad your supply. Consider online buy/sell/trade groups, eBay or other online options for purchasing extras too.

3. What do you need to keep those precious things stable? Is that a cooler for medications to stay cold or a warm water source for mixing formulas? Do you need backup power for medical devices if you must leave home? Think and plan ahead. Have those storage or hot/cold needs planned in advance—including having ice packs in the freezer or mixing supplies ready to go. For
metabolic needs like ours, this is KEY. Some medications are no good if not kept cold. You can also add “grab injection meds from the fridge” or the like to your note that reminds you to grab other items from number 2 above.

4. Medically necessary or appropriate food. For those with restricted or special dietary needs, having enough food that you or your loved one can and will eat is important. Again, individual needs will differ but consider having enough on hand to get them through a few days, in which time your resources would hopefully be less limited. As many of us know, finding food that works for special medical needs isn’t always easy to come by, even in the best of times.

5. Digital or paper records: emergency protocol or sick day instructions, prescription labels, insurance information, supply orders, pharmacy contacts and so on. If you couldn’t come home, what information would allow you to obtain more of what your loved one needs? What if you had to see providers outside of your normal network? What basic information might you need to make that transition smooth and less stressful? Having these things backed up on a phone, a spare jump drive or in paper copy is great. Ours live in a red folder within the bag.

6. Basic survival supplies: local, national and international organizations have guidelines for these supplies, so I won’t list them all here, but no one is exempt from needing the basics and as we as complex caregivers know, they can be even more essential for patients. Things like potable water, appropriate food, first aid, a light source (we love headlamps and solar lights) warm and dry layers are very important. Don’t forget about basic toiletries and sanitation needs, especially if running water might be hard to find at first—surely we all have plenty of disinfectants wipes and hand sanitizer around now, right? Battery banks and power cords for digital devices should be included here too.’

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