By Julie Ryan
Through every experience we learn a little more. While I wish I never had to be a caregiver, at some point most of us are forced into that role. Earlier this year I found myself in that role and I learned a great deal, including that even as the caregiver, I still need care – even if it’s self-care. I’ve needed a caregiver to some degree for almost ten years. I’m so thankful that I’ve had both my husband and my mom to help me through many rough times. As a patient, I’m often guilty of overlooking the struggles of the caregiver. This last year taught me not to take that role for granted.
Early in 2016 my mom was diagnosed with cancer. Her husband was already chronically ill and she is his primary caregiver. Thankfully, my health has held steady the last few years allowing me to step in and care for my mom during a time when she needed help. I’m thankful for my time as a patient because it guided my role as a caregiver, reminding me of the things that caregivers need to do for those who need care.
Allow for independence
My need for independence as a patient was the source of many fights between my husband and I. When I became the caregiver, I understood exactly where he was coming from. Thankfully, I also understood what it was like to be the patient and that for the patient to heal they need as much independence as possible.
Even with the limitations that chronic illness places on me, I wanted to do everything for my mom. But, doing so would not have been good for either of us. It would have pushed me past my limits and it would have made her feel useless, leaving her depressed and frustrated. Instead, I needed to let her do as much as possible for herself, because doing so was the best choice for both of us.
If we allow it, caregiving can take over our entire lives. It can consume us. The first time my mom stayed with us after chemo, I barely slept. I was so worried about what she might need in the night or that she might get sick. The first time that my mom spent the weekend with us I stayed home with her just because I didn’t want her to be alone. She was perfectly OK on her own, but I felt like I shouldn’t go out. We both needed that time apart. I needed to reset and allow some normality in my life, and she needed some space after having me there constantly for several days. We both needed some boundaries. Caregiving couldn’t be my only focus.
Eventually, I realized that I could still have a life and be a caregiver. If my mom needed me I was there without question, but she didn’t need me all the time, and we both needed a fence of sorts to keep our relationship in check. Setting boundaries when you are a caregiver is important even when you are healthy, but as someone with chronic illness it’s even more important. Without boundaries, I can get so focused on her needs that I forget my own. Focusing so much on her can also result in my help becoming a hindrance. She needed independence to create self-esteem and a feeling of control over her life. Without that she may not have fought as hard to recover.
Self-care is important for both the patient and the caregiver. It’s even more important when you are acting in both roles at the same time. Too often I found myself ignoring my own needs in favor of hers. Doing so was not good for me and quickly resulted in a decline in my health. As I saw my fatigue and pain levels increase, I realized that I needed to focus on self-care as much as I needed to help her do so.
Focusing only on the needs of others leaves you empty with nothing left to give. To have the energy and the heart to care for others you must first care for yourself. While I’ve heard and said this many times, it wasn’t until I experienced it myself that I really understood just how difficult it is to do – or how necessary.
Be the Strong One
I’ve cried on my mom’s shoulder more times than I can count. Even as an adult I’ve run to her many times. Yet, during this time I had to be the strong one, and it was often her crying on my shoulder. As I read up on her diagnosis I got scared. As much as I wanted to talk to her about what I read, I knew that she wasn’t ready to think about it. While I wanted to know the potential risks, she needed to focus on the positive outcomes. By carrying my fears to her I would have forced her to try to be strong and comfort my fears. She didn’t need to do that. Instead, I had to be strong and hide my fears when we were together. I didn’t have to be the strong one all the time, but I did need to be the strong one when I was with her.
I also had to remember that as much as I wanted to smother her with love, doing so would have let her know just how worried I was and would have increased her fear. She was already scared and doing a great job of hiding it (most of the time). I needed to remain strong in her presence and give her strength when she was struggling.
As a patient, I often assumed that the caregiver had it easy. They had no idea what I was facing. Sure, they had to watch me suffer and take care of me, but they didn’t have to live with the pain and fatigue. As a caregiver, I understood what I’d previously refused to admit, the caregiver may have it just as hard as the patient. To watch someone you love suffer is one of the hardest things you can do. To hold yourself back, create boundaries, and remember to take care of yourself while caring for someone else at times borders impossible, but it must be done.
Few of us make it through life without needing care at some point, nor without having to be the caregiver for someone we love. I’m thankful that my mom came through this last year and is currently cancer free, but I know it won’t be the last time that I have to act as a caregiver. I can only hope that I remember what I’ve learned as I face future experiences as both a patient and a caregiver. For all of you who live in both roles at the same time, cut yourself some slack. You are doing the best you can. Remember to create boundaries, take care of yourself, allow independence, and stay strong.
Julie Ryan, a regular contributor to ProHealth, is a fellow Fibromyalgia Warrior, freelance writer, and blogger. In addition to Fibromyalgia, Julie is currently diagnosed with Endometriosis, Migraines, Cluster Headaches, and Hypothyroid. She shares her journey, along with inspiration, and information on her blog at http://countingmyspoons.com