Myeloma, Party Of Two: First Responders
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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Tabitha,
That was an insightful column. What you describe is probably applicable to 90% or more of married couples. Dan is probably more handy than most husbands, including me. However, my wife Sue is in the exact same boat you find yourself. It is not interesting to her, so she has not taken the time to learn those things knowing that I have them covered. On the other hand, she is well organized about social things, such as keeping extended family phone numbers, birthdays, anniversaries, etc. I am totally helpless with those things. She has her kitchen well organized, and I have the garage (not quite as well organized, but I generally know where all the tools are).
But you are right, since I have multiple myeloma, if something happens to me, she would not know some of the same things you mentioned. Got me to thinking that I should at least make a list for her so that if something happens she could consult it and then be able to turn off the power and know where the water shut off was, etc.
Thanks
Tabitha,
Your messege has more insight then you know. I remember before my husband's stem cell transplant, he prepared me for the worst. How to shut off the water to the house, how to turn off the gas to the house. He made a book with all his user name and passwords and told me what days what bills came out when. He gave me account numbers, I remember he even showed me how change the toilet seat out. I remember this brought tears to the chaplain's eyes in the hospital when I told him, as my husband lay intubated from a fierce fungal infection after the stem cell transplant. I couldn't help think of this as I read your story.
My husband is now two years from transplant and three years from diagnosis and he is doing well. He has always been a very strong capable man. He is a carpenter, electrician, plumber and mechanic. He has taught me how to hang drywall, stain wood, sweat pipes and use every type of hand and shop tool known to man. He tells me that I am the smartest woman he knows. When he leaves this world, he has made sure our home is well taken care of and me along with it. I am hoping it will be a few years before he leaves me. Like I said he is doing well, but until then, he has a lot to teach me.
Good luck, Tabitha!
Roberta
Haha, so funny, Tabitha, and sooooo very true!! I am so fatigued from mutliple myeloma, meds, side effects, etc. that in emergencies I don't move that fast anymore. I am very outdoorsy and confident with "things", but so true that I have relied on my hubby for all the "traditional" man job type things around the house. Good wake up call column! Thanks for the reminder to remember/relearn how to shut off the water, gas, etc! We all get so used to our respective roles, but when things are not humming along, ooopppsss wake up call! Great column and fun too!
Tabitha,
Your advice is utterly on point. I would add to the list: being sure partners have basic competency in food shopping and meal prep; someone lined up for yard work and pet-sitting; access to all financial matters and accounts, and a will / trust and health and financial powers of attorney in place.
We were not remotely anticipating the abrupt cascade of debilitating health issues this summer despite intensive, excellent and (so we all thought) successful management of the disease. Life can change on a dime, and there is no substitute for being prepared to minimize caregiver stress and maximize focus on patients' healing and care.
Excellent column!
My wife has learned to find the fuse box and the main water line.
Thank you all for your comments. Lots of good advice here on everything from legal issues and wills all the way to fuse boxes and lawn care!
Roberta, it sounds like you have such a wonderful spouse to ensure that you know everything you need to know to care for you both.
While the hope is that we can always keep going about things "business as usual," it is a comfort to know that we are ready for the unplanned moments in life as well in case we/our loved ones have to be the go-to person!
Wishing you all uneventful, happy, healthy days.
Tabitha
Hi Tabitha, I liked this column for its practicality! You made really good points. Over the years, my husband and I have learned a lot about house maintenance and responding to issues. Many times the choice has to be, can we fix this ourselves, or do we call in the professionals? But knowing how to deal with an emergency is something we all need to know, as pointed out by you and the previous comments.
The last time we had a power outage, all I could find were candles to light! This happened just before sunrise, in the winter at 6 a.m. After that, I made sure that the flashlights were handy, and we do have those with rechargeable batteries too. Naturally, there has not been a power outage since then. We also have a large 'shop light' which is used for construction, but which we bought for a garden party. The party never happened because of a snowstorm in September, but it could come in handy for an emergency to cast a lot of light.
My phone connection would go out routinely about once a month last spring and my husband thought that the battery on the modem was wearing out. After recharging it many times according to the internet provider's phone instructions, for which I needed to call on a separate cell phone, they came out and replaced the unit free of charge. It helped to have a least some clue as to what to ask about!
The two of us try to problem solve together, and it really helps to have that option! There is always some problem to deal with at home, it seems!
Thanks Tabitha! What an experience! You are so right about being self-reliant and I know there are things I should be paying more attention to. Your experience is quite a wake-up call for us. A couple of weeks ago we had a bear outside our wall at 4:30 in the morning and we could not find a good flashlight. We did manage to scare the bear away with our noise. As a result, my husband went out and bought new flashlights and tons of batteries and strategically placed them by all our doors to the outside.
Hi Tabitha,
Your comments are especially meaningful to me right now. My father-in-law unexpectedly passed away recently. He was in great health, but did not wake up from a nap at a friend's house. We were all reeling and somewhat incapacitated. My father-in-law, however, was so well organized that his preparations made things easier for everyone.
First and foremost, he left an updated will with explicit instructions on who his executors were to be (and what type of service he wanted). This enabled us to quickly move him from the coroner's care to a funeral home nearby. All his important ID was photocopied and readily available (this also needed by the funeral home). His phone password was clearly found in his office. This helped my husband and brother-in-law find the phone numbers of all his friends so we could invite them to his service - as well as all his passwords.
We have lost a wonderful, dearly loved father. Grief and stress is hard enough at these times. He showed his usual caring nature by making things easier for us all.
Thanks, Tabitha, such a practical column on so many levels. I can't believe how many flashlights we have that don't have batteries. I found this out with getting ready to camp. Your description was so vivid. I am the myeloma patient, and I'm way too dependent on my handyman husband. So your article is a great reminder of how I can be more self-reliant. I want to be like Nancy, a problem solver couple.
Maureen
Nancy, Patti, and Maureen - Thank you so much for your comments. It sounds like I'm in good company when it comes to locating the ever-illusive (working) flashlight!
Helen - Your father-in-law sounds like a very thoughtful person. What a wonderful legacy he left for you all, knowing that he wanted to care for you in this life and beyond. You have my deepest condolences for your loss. Thank you so much for sharing these wonderful examples of his planning with us.