I have long harbored a secret ambition that I am pretty close to realizing. I’m sharing an essentials list…the sort people share on Facebook. Why? Because now there's something I know a lot about.
10 Priorities For Caregivers
Do cardiovascular exercise as often as you can find the time for it. And find the time for it.
I've always known exercise was important for my general equilibrium, but now I need it. Getting sweaty and worn out is powerful: it's energizing, anxiety-reducing, mood-elevating, and it makes you feel tough. In my ideal world I'd do something heart-pumping for an hour every day. I never come close to that. But maybe you can.
Navigating health care and insurance, tracking medical symptoms, communicating with friends and family, and parenting three young kids means that I am both frazzled and NOT ALLOWED TO LOSE IT. High intensity caregiving is emotionally and physically taxing but if the buck stops with you, you have to find a sustainable way to counter the fatigue without falling apart.
I have finally realized that the kinds of self-care activities that I normally love can leave me way too vulnerable and threaten my ability to function at the level where I need to be. I've had two massages and though they were lovely at the time, I felt depressed and out of sorts for two or three days afterwards.
I went to a yoga class soon after Mike started chemo, and couldn't stop crying during sivasana. It wasn't a good cry either. I didn't feel safe or comfortable. You just can't expect to peel off the outer layers during a time of duress and find inner peace glowing comfortably in there.
So my advice is don't peel them off -- unless you have back-up care arranged for at least a day or two. I can't wait to get back to yoga and cash in on the remaining massages dear ones have given me -- after this experience is safely behind me.
Say YES when people offer to help.
You might end up eating more lasagna and brownies than you normally would, but that's okay. Graciously accepting help, over and over, is like exercising a muscle. It's shaky and uncomfortable at first but grows in strength and ease over time (I suspect learning to receive help is a prerequisite for growing in wisdom). Also, now I finally understand in my bones, as many loved ones have told me over the past year, that accepting help is a gift I give to the people who care about us. I am allowing them the satisfaction of doing something deeply human and loving -- supporting someone in need.
Say NO to things you don't want to or can't do.
I have received countless asks for help with school and church and soccer and everything else. Just the usual: field trip chaperones, volunteers for an event. I'm sad that I can't commit to things like this, but I just can't. I can't plan ahead, and I can't invite more responsibility and stress into my life. So I say no over and over. I'm getting better at that, too.
Sometimes someone suggests I try a support group, or go see a therapist. Sure, those are good things to do. And maybe (see item #2) after I have some distance from this experience I'll seek that kind of support out. For now, if I have an hour to myself -- and I've already squeezed in exercise -- the thing I dream of is going out for a martini with my mom, or coffee with Amelia, or finding a far flung friend on the phone, or staying up too late with out of town visitors to talk after the kids are in bed. I need to feel the connection I share with beloved friends. Otherwise isolation in the intensity and responsibility of this experience takes over, with its attendant loneliness, and I stop reaching out.
Eat well every day; indulge all the time.
I think you have to take great care of yourself, and be mindful of what your body needs. I think when you are able to choose something really healthful and beautiful and nourishing for yourself, you remind yourself that you matter too. A lot. But I also think you should never feel like you have to deny yourself anything, and that every possible occasion should be made as special as you are up for.
So for me, that means a chocolate milk and cookies date with Beatrice and my mom at a playground this morning. Just because. And staying up past bedtime because we were having fun with neighbors. And eating a candy bar all by myself in the car after getting supplies for a school project one night, because I needed to be alone and to do something a tiny bit wild, with no one watching or commenting or asking for a bite. A Twix bar. There are worse things.
Adjust expectations as needed.
I was so frustrated in the beginning. I hung onto certain expectations: Mike will be better by Christmas (not so much), we'll be ready for a well-deserved Caribbean vacation in March (ha!), I'll have lots more time for myself and will work on writing (ah, well).
Nothing about cancer treatment is predictable -- at least not for us. Living one day at a time is really hard, but when things have been daunting that's what I had to do. Letting go of my old, pre-cancer way of thinking about the future was ultimately helpful, because I wasn't continually frustrated.
Do things you're good at.
Exercising competency! It feels great!! You might be someone who is really good at managing healthcare and tracking medication and finding creative ways to feed a sick person. But I still think it means a lot to engage in activities -- professional or otherwise -- even in teeny tiny ways -- that remind you that you are good at things beyond the very insular and narrow world of caregiving. Even though the labors of caregiving, homemaking, and tending the sick are likely the most important work we do, it is also the least valued, the most invisible. Women do most of it. It's complicated. It's expected; it's also a sacrifice. I want to say both that taking care of vulnerable loved ones is a holy thing that we choose to do AND knowing the value and feel of oneself independent of this activity is really, really important.
This might be related to the above item. There is something about facing mortality and confronting our human fragility every day that can make a person sensitive, raw. The good thing about that, for me, is the depth of feeling I experience when encountering art -- especially the everyday, community variety. Hymns in church, a high school musical, the African drumming ensemble concert at F&M, an excellent novel, children's artwork on the walls of my kids' school. It moves me. It is mind-boggling to me that people, despite the reality of pain and suffering and death, put their hearts and souls into creating beautiful, true things to share. I love that.
Sometimes we forget. I think it's useful to learn and have a structured breath exercise in your back pocket that you can take out and utilize in any circumstance, every day, and most especially when the stress is running high or responsibilities threaten to overwhelm. I picked this, but I suspect any deep breathing would do.
Meagan Howell-Brogan is a social worker and lover of books, friends, music, growing things, yoga, food, spontaneous social gatherings, excellent conversation, and her family. She has three children and works as a clinical counselor at the Student Wellness Center at Franklin & Marshall College. She bravely and lovingly walked beside her husband Mike on his cancer journey. Read more from Meagan at her blog.