I glance over the dinner spread one last time as I get ready to load my arms up with food and take it upstairs. She’s had a rough day, so this evening the food comes to her. I run down the allergy and reaction list; I mentally tick of nutrient values, tracking complex carbs, proteins and fats. I do this every time. Not because I’m being neurotic but out of necessity - I don’t want to tip the balance and make a down day a worse day. Post dinner it’s a new list, the supplements and vitamins. Then it’s hydrating and asking the same question again and again, “how are you feeling?”
I have my normal everyday tasks. I have a job to maintain, I have a gym schedule and a training schedule, projects I’m working on, shows I want to catch up on. Being a caregiver has become as much a part of my life as everything else. I care about the woman in my life immensely and I believe firmly that being a caregiver is about wanting to improve the quality of her life.
Learning this schedule and routine is not for the faint of heart. There are nights when we are struggling to get blood pressure to balance at 2 a.m. and there are days when she will tank mid-afternoon and finding what’s going to bring her back to slightly balanced becomes a “Where’s Waldo?” game of supplements and tinctures.
Learning the different symptoms can be another challenge altogether. I remember the first night I experienced her depersonalization. It was early on in our coming together and me taking the title of caregiver. She hadn’t been feeling well and as she sank further, she became distant. I initially couldn’t understand what I had done - in my experience this was totally a situation that bodes ill for a relationship! She had warned me it could happen and even as I tried to figure out what would help her I had to keep reminding myself that she cared about me and I hadn't done anything to push her away.
This fight against Lyme is as much my battle as it is hers!
I’m here to help bolster her when she’s struggling. That can be an empowering statement when you realize that fact! Reminding yourself of the key role you play is important in taking care of yourself - it would be far too easy to allow yourself to become resentful or bitter. I thrive knowing that she relies on me. Yes, some days it can feel monotonous, but that’s an important piece too - showing up on the days when you’re tired is most important!
You have to make sure you don’t put your life on hold. That is the number one thing a caregiver must do for themselves. Some things will change, it’s true, but that’s what life is; constant change. But maintaining the things in your life that fulfill you are key for your self-care. It could be reading for an hour, hitting the gym or going for a run; maybe it’s putting on your favorite show and zoning out for forty-five minutes. Whatever it is, keep these things in your life! You have to keep your mind happy and healthy as much as the person you’re caring for.
For me, stepping into this role as caregiver has been more of a lesson in my own self-care. I’m far more aware of my internal workings than I was before. I’m more conscious of my diet, my need for rest and relaxation. When you’re caring for someone else, you realize that they depend on you and that dependence relies on you being happy and healthy. I have my bad days just like anyone else, but I have far less of them since I started taking care of my Lyme Warrior. I make sure I’m getting the things in my life that make me feel fulfilled and energized. Being a caregiver starts with YOU, and from you it then can flow out to care for the people in your life.
She’s doing better most days now. She would argue otherwise but I have watched change happen for her. We are spending more time discussing ideas for the future and less brainstorming what will help her feel better that day; She laughs more and squints in pain less. There is usually some small hiccup during the day, but I’ve become adept at guessing what might help to keep things running smoothly.
Care is defined, as the provision of what is necessary for the health, welfare, maintenance, and protection of someone or something.
This alone should make you feel amazing! Your role is that of a provider, someone that is trusted and relied on. You’re a strong, capable person, who can learn to adapt to new situations. You’re the front line on days when they think they can’t go on, and you’re the support team when they’re fighting on their own. I’ve always been a fan of the Rocky Balboa movies. We caregivers have to remember that Rocky did the fighting, but he had Mick and Adrian in his corner. They both loved Rocky and took care of him so he could fight. She’s the Rocky in my life, I’ll be the Mick in her corner and the Adrian she yells for when she wins this fight!