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Myeloma, Party Of Two: Mea Culpa
By: Tabitha Tow Burns; Published: April 27, 2016 @ 12:49 pm | Comments Disabled
The house is quiet, rain is steadily pouring outside, and I’m on my third cup of coffee, but the words aren’t coming easily this month. The truth is, I have a confession to make, and like any other confession, it’s hard to begin.
But, here goes: I haven’t been a very good caregiver lately.
It took me awhile to come to this realization. You see, I strive to be a great caregiver to my husband, Daniel. We’ve been in our roles for a while now, so I thought that I had this down.
I manage all the logistic concerns, like reminding him about his appointments and following up with scheduling staff. I pay copays, address insurance issues, and ensure that he begins and ends his urine collections on time.
I attend to his physical concerns as well. I help him mark places on his back where he has new aches or pains, and I take photos with my camera to document their locations. I check with him to see that he takes his medications, and I keep a running log of questions to ask the specialist.
In terms of emotional support, I’m a consistent cheerleader and therapist. I offer encouragement and advice, and I listen without commentary when required. Where myeloma is concerned, I strive to make it the “Daniel Show” with me working behind the scenes. I try very hard to separate my personal concerns about his myeloma from the support I give to him as his caretaker. I try to avoid burdening him in anyway with the issues that caregivers face, especially the emotional ones.
Lastly, I tend to our spiritual needs as well. I pray for him daily, and enlist support from a trusted few in our church when we have especially tough concerns or needs. I strive to be a good example, using our faith as a positive coping mechanism and reminder for him that he is not alone.
So, with all this in mind, you may be wondering, what is left for a caretaker to do?
Where I have failed as a caregiver is in caring for myself as a patient. For months now – no, this is a confession, so I will be honest – for more than a year now, I have had a pain in my inner hip area that hurts when I walk at any length or arise from sitting from an extended period.
My pain developed on a vacation where we went from being couch potatoes to walking more than ten miles each day. I thought that I must have pulled a muscle, so I applied ice and heat, took some ibuprofen, and I didn’t give any more thought to it. The pain persisted, however.
It took weeks to feel any relief. In fact, just when I thought it was gone, it would re-surface again, especially when I went on a shopping trip or after I had been sitting at the computer for a while.
At first, Dan encouraged me to go to the doctor, but I thought that all I needed was time. I continued with the ice and heat whenever it would flare up. In time, I even developed a limp that I barely noticed anymore because it became such a routine part of life. It hurt, but I made excuses. The last thing I wanted was to be told that I needed some sort of laparoscopic surgery, especially when we were already missing work every two months with Dan’s specialist appointments.
After a while, Dan’s “encouragement” became “nagging,” and then outright frustration as I continued to struggle with the issue and didn’t go to the doctor. Daniel finally told me to book the appointment or he would book it for me. I didn’t care for his approach much, but I finally acquiesced, and went to an orthopedist.
I was looking for a quick diagnosis and a solution. Unfortunately, I didn’t get one. They took some x-rays, ruled out arthritis, advised me to lose a few pounds and take ibuprofen daily. They speculated that it could be one of several things and advised a six-month ‘let’s rule things out approach,’ for which I had no patience or time.
In response, I took my ibuprofen until the symptoms abated again, which they did, and I went on with my normal life.
After a while, the symptoms came back, and they developed an “attitude.” The limp has grown much worse, and it feels like a painful snapping when I pivot on the leg or move in the wrong way.
This time, and without urging from anyone else, I have scheduled an appointment with a new orthopedist. But what brought me to this decision sadly, wasn’t just my own discomfort. I finally saw myself as a patient, and I empathized with the frustration that Daniel must have been feeling in dealing with me as my “caretaker.”
The thing is, I may be a good caregiver, but I’m a really bad patient. I don’t like admitting that there’s something wrong with me, or not knowing how to fix it. I don’t like giving up control, and I definitely don’t want to spend another moment thinking about medical problems than I have to, especially given the amount of time I think about multiple myeloma.
I justified my stubbornness with excuses about not wanting to ask for the time off and having too much on my plate to deal with, but that is only part of the truth. I hate being a patient, because it puts me in yet another position where I have no control. And as a caregiver, I think that I have way too much “lack of control” in my life as it is.
So, why the turn around? I realized that being a caregiver and a patient are two sides of the same coin. How can I be a good caregiver if I’m not practicing what I preach? Why would Daniel listen to my reminders (or “nags” as he might view them) about his health if I won’t do the same when I am the patient?
Plus, by ignoring his pleas to take care of myself, what type of burden was I placing on him? Did he need anything else to stress about in his life? Probably not. One day he will need me to be stronger than I am today. I may need to care for him much more than I do today. How can I do this if I can barely walk? By protecting myself from whatever I feared with my hip, I was also being selfish.
One of the ways a caregiver cares best is by taking care of themselves, so that they may care for their loved one. I’ve heard this a million times, but it’s true. Daniel needs me to be wholly there, just like I need him.
It seems that his myeloma still continues to teach us about both of our roles, after all.
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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