CAREGIVING: We are expecting a snow storm for Thanksgiving. I’ve given emergency planning a lot of thought lately. I thought it might be useful to think out loud about it: What to do with a bed-bound Huntington’s patient during an emergency.
Getting Advice
The biggest worry I have during the winter is a power outage. Without power there will be no heat, no water pump, no toilets etc. If it were just me it would be no big deal. When we had the tornado and the big October snowstorm a few years ago, we spent most of our time sheltering at the Hampden Senior Center. We were there for nearly a week. But no power also means no power for medical equipment. I asked Mary Kate, our visiting nurse.
She said “Call 9-11.”
I said “But it is just the power.”
“Just call 9-1-1! An ambulance will come and take her to the hospital. She will be safe and warm.”
I also went to the Hampden Police Department and asked the same question. I got the same answer.
“Just call 9-1-1. If you have medical equipment that stops functioning call us. That is what we are here for.”
“Where would they take her?”
“Probably to your choice of hospital.”
“Would they take her to the nursing home in town (Wingate Hampden)?”
“I doubt it! If you ask they will tell you to get a generator!”
Of course, most times when the power goes out; it comes right back on. Ever since those big outages the utility and the town have removed a lot of trees and limbs. There will always be a few times a year where it is out for 30 to 60 minutes. My plan is to be fully sufficient for 6 to 8 hours; to have enough time to get Kathy out by ambulance in four hours.
Heat
I bought a small ventless propane heater called a Mr. Heater Big Buddy. It is really terrific. I use it some mornings when I am taking my shower to warm up the bathroom. Eventually I may hook it up to a larger propane tank that I would have to keep outside. For now this gives over 8 hours of heat on the lower settings from two one pound propane cans. It has a battery operated fan to spread the heat. If you use this type of heater you should always have a Carbon Monoxide detector fairly close. I will need to block off the living room with a tarp to keep the heat in a smaller area. I have extra batteries and four cans of propane.
Feeding Pump
The feeding pump has a rechargeable battery backup. So, as long as that is kept charged up, we will have plenty of time. I have left it running on battery power for several hours by accident. I can always give her food with the syringe, or by gravity feed.
Suction Machine
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This was the big one. Kathy needs to have her throat suctioned several times a day. The DeVilbiss suction machine that I have used is a “portable” machine with a battery backup. It will run on battery power alone for a short period. Ours was rented from Baystate Infusion in June under Kathy’s old insurance plan.
Some activities seem to make her breathing worse. Cleaning her mouth and her teeth creates a lot of saliva and mucus. Sometimes rolling her on her side to change her, dislodges the crud that collects down there. So, suction is life or death for Kathy, power or not. When our new insurance started we were told they would need to find a new supplier for the suction supplies. Agawam Medical was all ready to ship us a good machine, but it was a straight plug-in version: No battery backup. Miguel, our coordinator at NaviCare, told me to make some suggestions about a small generator or backup system to use. He would ask his supervisor to cover it under Kathy’s insurance. I thought that was amazing by itself.
Electricity
One of the items I suggested in my email was a battery “power pack and inverter”. These have a 12 volt acid battery and an inverter to change the DC power to AC power. I kind of liked the Black and Decker Portable Power Station. It recharges by plugging in to an outlet and provides 500 watts… for a while. On Amazon they go for $99, so I would probably buy two of them to keep us covered longer. It has extra stuff that I don’t need; like an air compressor to inflate stuff. And it has jumper cables; in case I need to jump-start Marty. Like car batteries, if you don’t use it, or keep it charged up, it loses the charge. It takes a couple of days to charge it up for the first time, too.
I also suggested a little inverter generator. They are smaller, quieter and more efficient. There was a tiny one called the Earthquake ($284) which would have powered the medical equipment. They put out clean power, which is a plus for plugging in phones and computers.
In the end Miguel called back and said that the insurance was going to just keep renting the suction machine we have from Baystate. (They try not to use anything Baystate.) While we were on the phone we discussed emergency plans. Depending on how much of a panic we are in, rather than calling 9-1-1 I asked if we might call National Ambulance. It might be cheaper for the insurance company. They give Kathy rides back and forth to her medical appointments. It is like a cab with EMTs and flashing lights. I used to call them Ambivalents before I took on this role. The question that is still unanswered is “Where to, lady?” if it starts to get too cold. Right now, I guess, it would be Mercy Hospital in Springfield.
Getting a Generator
So I got a generator, anyway. I figured, even though the suction machine has a battery backup, it doesn’t last long enough. Also, it doesn’t suck as well using the battery. (pun implied). I opted for a regular small generator. I browsed reviews on Amazon and found a Champion 1500 watt that had good reviews. One of the reviewers mentioned that they bought a slightly stronger version at Tractor Supply and it was a few dollars cheaper. It’s a fun store to go through. Cowboy boots; next to horse feed; next to gun safes and cattle stuff. And tractor parts. The gas can was harder to figure out than the generator. To prevent pollution you have to do this twisting motion on the nozzle while pushing down on it. It was as if some genius said, “You know how people hate those child proof medicine caps? Well this will really drive them nuts.” And no, it isn’t spill proof. It was all over the generator, the deck and me.
I did a quick test. I plugged in the refrigerator but it really slowed down. It doesn’t have the power for that. It’s winter anyway. The good news is that it does power the coffee maker. I will survive.
Other Stuff
The generator with a surge protector will give me occasional use of the computer, the modem and the phone. The phone is internet based from the cable company so I’m not sure if that will work. Our cell phone will work as long as the cell tower up at the Hampden dump has power. I can charge that in the car, if needed. I’ve got enough flashlights and batteries. I also fill up Kathy’s food bags with water and freezing them into ice paks. That will keep stuff from spoiling for a bit. I have extra bottles of water in the frig too.
The only thing I haven’t been able to do swing yet is a snow blower, but I am working on getting a used one.