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Myeloma, Party Of Two: First Responders

By: Tabitha Tow Burns; Published: August 24, 2016 @ 5:32 pm | Comments Disabled

It’s funny how the most obvious things in life can escape your notice until you nearly miss the boat.

This was definitely the case for me recently. The wake-up call I answered has changed me as a caregiver, and it may be a friendly reminder to other caregivers and myeloma patients that the boat that’s sailing by could be about to run you over!

My moment of clarity came as I was lying on our front lawn at 3 a.m., covered in water and mud. A pipe near the foundation of our house had burst earlier that night, and my husband Daniel and I were shoveling out trenches around a big blue tarp that Dan had secured around the neck of the busted, leaking pipe. To be accurate, it was less a leak and more of a deluge!

At first, Dan couldn’t find the emergency shut off valve at the water meter box, because it was overgrown with dirt and grass and leaves. Amidst the geyser-esque fountain spewing from the pipe, Dan shoveled as fast as he could, while I searched online for 24-hour plumbers. We were doing much of this work with only the lights from our cell phones to guide us, given that none of our myriad flashlights had fresh bat­teries – an irony not lost on us. It was 3 a.m. before a 24-hour plumber could come out to do the repair, so we had to find a so­lu­tion ourselves. And by "we," I mean, of course, Dan.

Eventually Dan got the water turned off. In fact, it was his quick reaction that kept our house from flooding. He grabbed the tarp and the duct tape, and he used it to create a bib around the faucet to channel the water downhill. He also knew that we had to dig trenches away from the foundation to keep the rising water from entering the weep holes in the brick, or else the water could’ve come inside the house. I tried to help as best I could, but the truth is, without Daniel, our house would have flooded before the plumber arrived.

The whole experience has made me realize that I’ve become overly reliant on Dan for certain types of prob­lems. It’s easy to do; he’s a really smart, physically capable type of guy. As an engineer, he knows how stuff works and how to fix it when it goes badly.

But, what might have happened if Dan had been in the hospital, or wasn’t well enough to spring into action? Would I even have known where a crescent wrench was, or how to use it? Sadly, the answer is no. I didn’t even have the first clue where the water main shut off valve was or how to use that tarp.

Like in many marriages, over time we’ve drawn an invisible set of gates separating his world and mine. It’s not that we’re especially traditional, because we both have careers, clean the house, and make dinner. But we’ve definitely taken ownership of different things. He uses old engines to rebuild shop fans, and knows how to fix our ‘cloud’ with something called ‘cat 5 cable.’ I can tell you what’s been paid, where his keys are, and which social obligations we have.

After our foray into moonlight plumbing, I’ve learned something, though: being a good caregiver involves more than being the appointment keeper or the 24-hour urine jug carrier. A caregiver must be a first re­sponder, as well.

Now, of course, I don’t mean “first responder” in the medical sense of the word. I’ll leave Dan’s myeloma treatment to the professionals. What I mean is that I need to be able to deal with a variety of situations that could come our way – including those outside my comfort zone.

This was a wake-up call for me, so I set out to make some changes and empower myself before life brings another deluge.

The first thing I did was make a list of the things I need to know or be able to do to handle most emer­gencies if Dan isn’t able to help me. I was pretty shocked at how little I knew about the most basic aspects of our home, especially things from the “garage zone,” which I tend to avoid since it’s hot and dirty and lacking in any discernible creature comforts. But that has changed for me now – because if multiple myeloma has taught us anything, it’s that both of us should be prepared for everything.

My next step was to learn about our home, where key systems are, and what to do with common household problems. For example, I need to know where the breaker box is, how to turn off electricity to the house, and what to do in case the lights go out. I need to know how to turn on and off the water heater and what to do if I smell a gas leak.

After making my list of things to learn, I set about making an emer­gency kit. I purchased a flashlight and bat­tery recharging station that now hangs on a wall where we can access it quickly. I made a tub of emer­gency equipment: a small toolkit with assorted hand tools, duct tape, first aid kit, rechargeable bat­teries and a recharging station, waterproof matches, a hand shovel, and a fire extinguisher.

I also made a laminated sheet of emer­gency numbers for utilities emer­gencies, plumbers, electricians, hospitals, veterinary care, family, and automotive service / towing information. What’s as important as the list itself was putting it somewhere where it can be easily accessed and won’t get damaged or thrown away.

With multiple myeloma, it’s easy to think that the emer­gencies of life will always be health related, but that’s not the case. Being a care­giver means that I need to be able to care for us throughout all of life’s challenges. In my case, I needed to know about the mechanical aspects of our home, but for another caregiver, it might be where the household accounts and insurance policies are, how to locate user name and password information, or what to grab in case of emer­gency evacuation.

In the end, most issues will work themselves out, but a little preparation ahead of time can go a long way to easing a stressful experience. I’ve learned that caregivers and patients alike need to be prepared for life’s little deluges, and that includes being a first responder to things outside your comfort zone!

Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diag­nosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her pre­vi­ous­ly published columns here [1].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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