Miller: Caregivers Must Remember to Take Care of Themselves
Women have typically always assumed the role of caregivers in their families. It is instinctively natural for us – it’s what we do. We nurture, we care, worry – we take care of things. I think back to when I was younger, trying to remember a time when I wasn’t taking care of someone. I think it was when I was in high school. It’s okay really, as I said; it’s natural for me. I am very comfortable in this role – good thing right? But there are times that I wonder, is there a cost for all this caregiving? Do I give up some of myself taking care of everyone else?
My first role as a caregiver was helping take care of my grandmother after my grandfather passed away. My grandma didn’t know how to do anything on her own. I moved in with her to try to teach her how to live on her own. I was young and unattached at the time. Then I got married and we had our first child, Melanie. Suddenly you have this little person who depends on you for everything – literally. Then we found out our little girl was developmentally delayed. She needed therapy and doctors’ appointments and interventions. Then she started getting sick and going into the hospital a lot. Caring for her was going to another level.
During this time, I became pregnant and gave birth to my second daughter, Katy, who thankfully was healthy. But I now had another one of these little people who was pretty much fully dependent on me for all of her needs. Although to my middle one’s credit, she figured out quite fast how to do as much as possible on her own – holding her own bottle at 7 weeks, sitting and crawling at a few months! I was also working full time. Somehow, I kept it together, and I kept smiling, and positive – mostly because I saw my daughter smiling and if she could well then so would I, but also because if I didn’t, then she would sense that I was scared and I feared it would affect her attitude.
As my oldest, Melanie, got sicker we spent more time in the hospital. Caregiving became even more of a juggling act, trying to coordinate schedules and parent two children in different places. I remember going into the bathroom at the hospital to try and calm myself down. I would stare at myself in the mirror and tell myself “You are okay, you’ve got this. You are not in control of the bigger picture, you are only in control of how you handle it. Take a breath, wipe those tears and smile.”
Somewhere along that journey, I became pretty good at keeping it together and helping others feel okay, so it fell on me to be the caregiver for many people in my life. It also became a mission for me, to learn how to advocate for those who are in need and who can’t help themselves. My husband wasn’t handling my daughter’s illness as well as I was and he needed love and nurturing. My daughter was an active and busy toddler who needed love and mothering. My grandmother was getting older and needed some care – I lived closest, naturally I could help. My dad was also getting older and was having some medical problems. Somewhere along the way, I had become the medical expert in the family, so I was naturally the best person to take everyone to their doctor visits.
Then my daughter died. I thought, well now someone will take care of me, I have lost my child, the worst has happened to me. But guess what, when you are a caregiver and other people are depending on you besides the one who is sick - they still depend on you after the one who is sick passes away! I thank God that I am as strong as I am and that I was especially after my daughter died. My husband had a very hard time, he needed me. My surviving daughter needed me. I was blessed to believe, as I still do, that Melanie was here for a reason and she made me a different, better, stronger person, and I was privileged to be her mother for however long she was here.
When my son Oliver was born, I was welcoming the caregiving responsibilities of having a newborn. We had no idea that he had suffered a stroke in utero until after he was born. After the initial shock (and yes I will admit to having a pity party – how could this have happened? We already went through hell and back, it wasn’t fair), I found myself once again smack back into the whirlwind of caregiving. My middle child Katy was now 5 ½ years old, in Kindergarten and gymnastics. My grandma was older and frailer and needed to get to doctor appointments and supermarkets, etc. My dad was also older and moved in with us so I could keep an eye on him. My son was medically very complex and in and out of the hospital often. Trying to coordinate his medications, appointments, therapies, surgeries, etc. was a full time job. I had to stop working.
Mind you, I had worked all through my daughter’s illness and death. As crazy as it got at times, that little job kept me sane. It was somehow separate from everything else. Now after all this time, I could no longer work. I can honestly say that after all these years this was the first time I felt something chip away at me. But what could I do about it? I had a sick kid, a 5 ½ year-old, a frail grandparent and an aging dad – all depending on me. Make it work. I smiled, I laughed, and I felt accomplished because I pulled it off. I kept my son going, which was no small miracle – I advocated for every one of his needs –because when you have special needs, nothing comes without a fight.
I became an expert in things I didn’t even know I knew about. I was the person people called for help, for answers, for advice. I was the person they called to ask about doctors, to cry to. Suddenly, I had somehow broadened my caregiving role even further - often to complete strangers!
For the most part, I am still pretty comfortable in this role. A mentor of mine years ago asked me one morning how I was doing. A simple question, one that we are all asked multiple times a day. I answered probably the way I answer much of the time “We’re doing okay. He had a pretty good night, not too many seizures, and he went to school.” She said “That’s good, but that’s not what I asked – I asked how YOU are?” I didn’t even realize I did that. I don’t realize I lose sight of myself. I am so used to thinking of myself last, behind everyone else, that I am not even aware of it. I don’t even know I do it. I am so used to my focus being on everyone else and what they need, that often I don’t think about what I need.
Since then, I try to be more aware of my needs and myself although admittedly, I do forget every so often especially after taking on my role as an Assemblywoman. I took this new job because I welcomed the opportunity to be able to help make necessary quality of life improvements and changes in our state.
And my family did help more once I got to Albany, but let’s just say it isn’t as natural or easy for them, so I’m still in my whirlwind. The traveling back and forth to Albany has added a new challenge to overcome. And of course, I am getting older and my son is getting bigger. While my grandmother and my father have both passed on, my mom is now having some cognitive impairment issues. The cycle continues. And every day that I am healthy and able to care for the people I love, well that’s a good day. I will smile, I will look myself in the mirror and say, “You’ve got this, you are in control of how you react, you can make a difference”