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Myeloma, Party Of Two: The Caregiver’s Caregiver
By: Tabitha Tow Burns; Published: August 28, 2015 @ 8:15 pm | Comments Disabled
I have a new favorite place in our house. It’s a place to discover, create, and retreat. A quiet space with pale walls of robin’s egg blue, creamy white cabinets, and sun beams on butcher block countertops. There are three workspaces in the room: one desk flanked between short bookcases along one wall, and two project tables along the perpendicular walls. It’s perfect for scrapbooking, putting puzzles together, journaling, or just sitting peacefully.
From my workspace I can see the resilient red rosebush that grows in the garden just outside my window, and I often find myself there gazing at scampering geckos or fluttering butterflies as I read my Southern Living magazine or scroll through Pinterest.
Despite loving the space now, the room almost didn’t happen.
As a caregiver, most of my consideration is for my husband Daniel, who was diagnosed over three years ago with smoldering myeloma. I like to spend almost all my free time with him. We have similar interests, so it’s easy to pick movies, talk about the books we read, or discover new things together. At night, I am content to sit with him and watch whatever he wants to see, except for "Shark Tank." I’m usually up for whatever he wants to do, wherever he wants to go on vacation, and I support whatever tool, gadget, or gizmo that he needs for his workshop in the garage. My greatest happiness is just seeing him happy. It’s that simple.
Back in our old neighborhood, our friends couldn’t imagine one of us without the other; we were “Danitha.” We did everything together. We were always joined at the hip – throwing dinner parties, volunteering in the neighborhood, or singing in choir. And it was great.
Since his diagnosis, we still do everything together, but now I feel a deeper sense of urgency, almost a panic, that I really need to be near him. I want to soak up every precious moment that I can with him. Up until recently, friends would ask me to go out for girls’ night, and I would turn down the invitations, because it didn’t seem the same without him there. Chalking this up to a coping mechanism, I’m self-aware enough to admit that it probably wasn’t exactly “healthy,” but hey, I thought, most mental health professionals aren’t dealing with this stuff on a personal level either.
What we want, however, is not always what we need. I guess my husband knows me better than I know myself, because he began earlier this year caring for the caregiver – despite my vociferous assurances that I was perfectly fine.
It all started with this extra bedroom we had at the house. I wanted to turn it into a third guest room so that we’d have more space for when friends and family came to stay with us. Daniel disagreed. He thought we needed a retreat space where I could work on writing and crafting, and he could work on his model ships after he had limited mobility. It took a while, but finally I gave in.
Daniel spent weeks building schematics in design software. He built much of the furniture himself, and the rest we purchased from big box stores and assembled ourselves.
I wondered if we would enjoy the room as much as he thought, but now, I can honestly say he was right. I spend most Saturday mornings in that room by myself, where I find much needed time to recharge my batteries.
Another thing that Daniel did was urge me to take a class in a field that I find interesting. I’ve always wanted to write a novel, so he encouraged me to take a class on that topic in the evenings after work. I was hesitant at first, but it turns out that he was right about that too. The class was for one night a week for eight weeks. I thoroughly enjoyed it. Once I gave myself permission, I felt rejuvenated by the time that I spent developing myself and stimulating my creativity in ways that had nothing to do with myeloma.
As caregivers, it’s easy to make your entire world be about your loved one, but we need to love ourselves as well.
The last thing that Daniel did for me was to encourage me to a positive outlet for the everyday stresses and strains that come with being the spouse of a cancer patient. When the chance came last spring to begin writing for The Myeloma Beacon, Daniel supported me wholeheartedly. He knew me well enough to know that I find meaning in connection, and solace in togetherness. We may all be from different walks of life, but we are together in our struggle. The Beacon has provided the forum for us to meet, support one another, and “hope” together. It turns out that he was right about that too.
All this time, I’ve worried about being the best caregiver I could be. I was afraid to be without him, worried that he might need me and I wouldn’t be there. But, in more ways than I can count, Daniel has been my caregiver all along. He has given me the encouragement to be me, not just his spouse, patient advocate, or emergency contact.
Caregivers, I understand that you need to care for your loved ones. In the face of their illness, it’s easy to feel helpless, and sometimes you develop a sense of co-dependence – a need to always be there to make sure that they aren’t somehow taken from you when your back is turned.
Daniel gently reminded me this year that caring for people is a two-way street. Just as you need to care for your patient, your patient needs to care for you. Perhaps your loved one wants to show you the importance of taking time away from myeloma. Maybe they know what you need, but you have been denying it yourself. Take them up on it. In the end, it will make you a better (and more thankful) caregiver.
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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