In 2004, we received notice that Hurricane Charley was going to make landfall in Southwest Florida, catching all of us off-guard -- as just hours earlier, the forecast had called for a direct hit to Tampa, 165 miles to the north. Hurricane Charley’s expected peak intensity? 150 mph.
I remember looking at the news that day, in utter disbelief that the screen was showing a loop that would, within hours, bring the brunt of the storm straight into our sleepy beach community.
I remember too, the ask by area emergency preparedness teams to evacuate. Wise advice that ordinarily I would’ve immediately followed, except that I had a veritable “home hospital” set up in my terminally ill son’s bedroom.
That’s right, my 13-year-old son, Austin, was cognitively intact, yet medically and physically fragile due to a rare, neurodegenerative disorder -- and we were being asked to leave our home which was the site of incredibly complex care for him.
Our choices were to go to another city to a hospice facility or to take both Austin and my then 9 year-old-daughter to the high school evacuation center. Neither was achievable because at that point, simply moving my frail child could mean causing severe injury to him or worse, neglecting him (as a single-parent caregiver) during a 2 ½ hour drive could cause him to die, as he needed oxygen from a portable O2 tank and constant suctioning to maintain an open airway. Though I was desperately worried what would happen to him, I was equally terrified of what my daughter would see while buckled into her seatbelt next to him should he struggle to survive the trip.
Should we have evacuated? Yes, but we stayed and what ensued was nothing short of pure chaos, a miracle and a real learning opportunity. Here’s how we got through and I hope it’s of some help to you if you’re faced with a making a gut-searing choice between life and death:
1. Call your hospice or home health agency immediately, not at the last second. Though they may not have a solution for you that moment, but be assured they will do everything they can to find you help...and course, please evacuate if you can. Also call the area Emergency Management team and let them know you’re staying...again, only if you must.
2. If you’re faith-based or even if you’re not, call the closest church to see if they can be of assistance. You may be pleasantly surprised to see how the church community springs into action in a disaster. A member of our church sent his construction company employees to our house to board it up before the storm.
3. Remember that hydration is key, so purchase as much water as you can. It’s also of benefit should you have to keep your loved one cool in rising temperatures that occur with a lack of electricity. Water will also help to keep your medical supplies clean. My son, whose brain couldn’t regulate his internal thermostat, could’ve died as a result of no air conditioning, which caused his temperature to sky-rocket to 104.5.
4. Expand your tribe. Though your friends and/or family may help you most of the time, not all people are good in a disaster. Therefore, you may need to reach out to a completely new group of people to help you get through the storm.
5. Remember your nurse may not be able to get to you, so you may have to go through this alone. Screaming at the healthcare agency will not help. Remember also, that they too, have families are also trying to care for you. Ask them how you can get additional medication for your patient/family member.
6. Ask a friend to go shopping for you NOW! Here’s a short list:
· New batteries and a battery-operated radio
· First aid kit: Band-aids, gauze, cotton, hydrogen peroxide
· White vinegar to sterilize nebulizers, if you have them
· Chux pads to keep the bed clean
· A separate cooler for medications
· Paper plates and plastic utensils and cups
· Pliers in case you need to repair or disassemble equipment
· Toilet paper
· A map in case cell service is down
· Ensure, Pediasure, Pedialyte or other liquid nutrition, if your loved one requires it.
· Hand-held fan with extra batteries
· Washcloths, water and extra ice to keep your loved one cool should the temperatures go up.
7. Remember: do not light a match or bring a candle near O2. If you’re wearing oxygen, do not go within eight feet of an open flame.
8. If you’re going to drive with an oxygen tank in the car, please you're your provider about their rules. Also, always, secure it first. It can become a deadly projectile in the event of an accident.
9. Remember to bring your book of medical documentation. This is very important, especially if you lose cell service or internet access.
10. Bring extra clothing. “Accidents” happen for both patients and caregivers alike.
Remember, being seriously ill is frightening in the most normal of circumstances. Add in a major storm and the emotions of all concerned can quickly escalate. So please stay CALM:
Call your care team, church community and neighbors immediately. Ask for guidance and real boots-on-the-ground help.
Ask your loved one, in a gentle voice, how he or she feels about the storm. You’d be surprised how many caregivers spring into protective “do-er” mode and never remember to ask the patient how he or she is feeling. Compassion and empathy are tremendous healing elixirs, especially for those who feel helpless and powerless in the face of a natural disaster.
Love unconditionally. Understand that everyone is amped up, feeling nervous, and uptight. Natural disasters bring out the best and worst in people. Cut them some slack — and yourself too, for that matter.
Move it and make the most of it. Get going today— knowing that this will be a difficult, yet meaningful experience in the story of your life.
In closing, remember that the outcome will largely be based on your ability to stay CALM and kind in the midst of this and every other storm that life brings your way.