For so many of us, being the sick family member is just part of our identity. We sit in our hospital bed waiting for knocks on the door, greeting family members as they walk in. Even on those days when you’d rather be alone, deep down you know you’re thankful that someone who really knows you came to sit with you.
I always felt like I needed to fill the silence but would quickly run out of topics as nothing much was really happening in my life. I knew that visiting me wasn’t fun or particularly interesting. I also knew that even if I asked them not to come, eventually they would anyway. It didn’t matter how bad it got, or how long I went without actually showering, they would still show up because they love me.
This love that we have for our family (and our friends that might as well be family) is truthfully only something I’ve ever been on the receiving end of. I’ve been very fortunate that I’ve never had to watch anyone other than me be so very sick. But that all changed this year…
Flipping the script
On New Year’s Eve, while everyone I knew was out celebrating a new year and new opportunities, I was sitting bed side in the hospital as we received a stage 4 lung cancer diagnosis for my Dad. I began 2015 knowing that I would lose my father this year. The doctors were very hesitant to give us any prognosis, but we pushed because as a family we knew we could make choices about how we’d spend our time. If we just had all the information, we could figure out the best way to use our time left together. What we didn’t know was that the best-case scenario was one short year and we would actually have the worst case scenario which gave us just three extremely short months.
During those three months I was given the honor of spending a lot of time with my Dad. I say it was an “honor” because, if we’re lucky, we get to choose who sees us at our worst. My Dad started chemo and radiation quickly and just as quickly it knocked him on his butt and he had a hard time doing things for himself. I was able to work from home one day a week and spend that time with him. On those days I rarely got any work done but it didn’t matter.
When he was home, I got to be the one who made his meals and attempted to make his incredibly intricate smoothie recipe (which I didn’t ever get right, but we did laugh a lot about it). When he was in the hospital, I’d knock on his door, and quietly walk in hoping not to wake him. It was like one of those weird movies where the perspective between two people changes over and over again. I knew what it was like to see your family walk in, and now I knew what it was like to walk in and see someone you love sitting there.
Truthfully, it never gets easier; you just stop paying attention to it. Some days we’d sit there together and watch horrible daytime television and I’d crochet him new hats and go pestering nurses for new cups of water. I’d watch the clock for when it was time for his medication and I’d be the one who would laugh loudest when he’d jokingly harass a new nursing student. I tell you, spending that time with him was truly an honor. We’d talk about the serious stuff sometimes, though it was often through waves of tears and laughter and in those moments I realized how lucky I was to have that time with him.
Obligation or choice?
For me, I didn’t care that I drove 40 minutes to the hospital and that every time I walked in those huge revolving doors I had to talk myself through my own hospital PTSD. I didn’t care that I ate vending machine food regularly and that for a fair amount of each day my Dad was actually sleeping. I did care when I felt like nurses were neglectful or that doctors were not actually listening. I cared when I felt like things were taking a turn for the worst and no one was paying attention.
This experience is not unique…I did not feel or experience anything that families of sick patients across the world have never felt. I did, however, get to see that caring for your loved one is not the burden I always thought it was. I never dreaded going to see my dad and I never felt like advocating for him as a patient was “not my job." What I learned the most from sitting in those chairs for hours, holding my Dad’s hand or watching him sleep was how much I truly loved him and how much he must have loved me to watch me go through so much pain. I always felt like my family didn’t have a choice when I got sick and that since they were my family they felt obligated to visit and take care of me. If I’m honest, I probably still haven’t kicked that feeling of being a burden all those years ago. Now I see that they made a choice. The reward of being there and being needed was well worth those tears.
As a patient, sometimes I didn’t feel like talking to my visitors and then I’d feel guilty for that. I’d feel guilty if I wasn’t in a positive or uplifting mood. I felt guilty if I needed them to help me with something or go find a nurse. I always felt like they were secretly rolling their eyes at how needy I was. When my Dad was sick, I was practically jumping at the chance to help him, often annoying him because I was too eager. I wanted to desperately show him that he had my support, that I loved him, and no feat was too big or too small when it came to my help.
Let those who love you, care for you
I’d love to say that if I end up in the hospital again, my perspective will be changed. I sincerely hope that it does because the difficult way I insisted on doing things when I was the patient was completely unnecessary. Being a caregiver is one of the most selfless jobs anyone can take on. Frankly, I would have switched places with my Dad in minute; I’d have gladly taken his pain, his worry, his cancer. I’d have taken anything I could if it meant he could have stuck around. And for the first time, I understood how much my parents truly love me and how painful my sickness was for them too.
Illness doesn’t happen to just the sick person, illness happens to a family. Chronic illness is a diagnosis for the entire family. As someone who is chronically ill and got the honor of taking care of my Dad, I tell you: let those who love you care for you. Ask for their help. And in some backwards way, it actually will help to ease their pain too. Your family is in this together, and there is no place they’d rather be.
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Jackie Zimmerman is a multiple sclerosis and ulcerative colitis patient and the founder and executive director of Girls With Guts. Since diagnosis, she has blogged her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community and pays it forward as Social Ambassador of the IBDHealthCentral Facebook page. In her free time (what free time?!) she spends time with her two rescue pups and plays roller derby. She’s online @JackieZimm.