Some people don’t like the word caregiver or caretaker to be used for a parent or spouse coping with a family member with a chronic illness. What other word is there?
I have tried to find a better term to use because “caregiver” or “caretaker” is associated with older people who need support from a hired person either at home or in a group living setting. But so far I have not come up with something better so I just say, my son has Crohn’s disease and I am his mother, cook, teacher, tutor, case manager, nurse, aide, driver, and more
I am managing my son’s health care (making doctors appointments including acupuncture, hypnotherapy, his medications, the pharmacy, his bi-weekly medication injection, supplemental feedings, and making health care decisions). Thus, I am a nurse and case manager. I am coordinating his academics by scheduling tutors, meetings at school and staying on top of the work he is doing. Thus, I am a teacher. I am shopping cooking, cleaning, preparing meals and constantly re-evaluating his diet and what he should be eating. Thus, I am a cook and dietitian. I have considered meal delivery or one of those ingredients-all-measured-out-meal prep companies but so far I am not sure if that seems like an easy solution. There are preferences and restrictions and when I have tried a few times to have someone else cook for us, it has not been received well so I carry on with my farmer’s market/Whole Foods/Trader Joes/and Sunday meal prep strategy. I would be remiss not to mention that Lowell has learned to cook many things on his own and he is a good help in this department. And although he just turned 17, learning to drive has been put on the back burner because is it hard to drive when your stomach hurts, and with all this going on so I drive him to various appointments, specialists, school, piano lessons, etc. Thus, I am Uber.
I wrote in my last post about my taking care of myself via drinking juice, working out, trying to sleep better, limiting doing too much, etc. And about the burnout, or what some in the wellness community have termed adrenal fatigue, which is described as too much cortisol-a stress hormone-being released into your body. Not sure this is a real thing but it sure feels like it to me. I am still full on taking care of my son, working on my charity events and programing, and trying to engage with my other relationships and activities.
In my life, I have had difficult jobs that required long hours and trying bosses, struggled through an alternative college education (Hampshire College) that required lots of self motivation when I left home after I had just turned 17, and dealt with complex family dynamics, as well as family members struggling with health and financial issues. My brother, who lives in northern California is currently in a crisis of sorts, as his developmental delays and Traumatic Brain Injury are coming to a breaking point so my mom and I are figuring out how to transition him to a better living situation.
Perhaps the complicated scenarios of my life have pushed me a little closer to the edge than if I was mostly just coping with my son’s health challenges. We all struggle with our own history and current dramas, but for me, all of this coupled with the practical day to day details of my son’s situation, and of course the emotional toll it can take, remind me about the importance of focusing on my own well being.
I often feel tired, frustrated, paralyzed and don’t know exactly which direction to go in. I struggle between fighting these feelings (be positive, something will give, you have the answers) to floundering (what should I do first, why cant I figure out how to help everyone, where should I focus my efforts?)
Last December I went to a 3-day yoga retreat. I have been wanting to do something like this for a long time because I feel this pulsating anxiety through my body many days and it seemed like the healthy choice would be to step away from my usual life and do something that was focused on relaxation, healing, and that included limited Wi-Fi access. The teacher of the yoga class I have sporadically taken over the years has mentioned the yoga retreats she leads. This one was in early December, and it was a good time for me to go. There were 10–12 other people who attended, none of whom I knew. I considered going with a friend but better to do this on my own, as then I would not be responsible to anyone, for anyone, but myself. As the weekend approached, I worried that I would not be able to easily calm myself and have an impactful experience. The schedule consisted of yoga and meditation for 2 hours twice a day, silent time in the mornings through breakfast and the first yoga class, and time in between for hikes, reading, napping, anything of your choosing.
The location was a ranch in Ojai, a majestically, mountainous, town less than 90 minutes from LA that is a jewel for anyone living in Southern California. I have been to Ojai several times since moving to LA but never to this part in this lovely canyon that was home to our yoga weekend. There were 3 quaint houses with fireplaces, and meals were prepared by the yoga teacher’s husband.
Everything about the retreat was great but having someone cook for me was the best! Three meals a day. Organic, vegetarian, fresh and with incredible care and thought put into every meal. He heated up the coffee mugs in the oven in the morning so you would have a warm mug for your hot coffee. He picked citrus from the trees outside the kitchen and then freshly squeezed a pitcher of juice in the morning. He made homemade bread with delicious tahini/miso spread, and hearty soups and stews with fresh pesto for garnish. There was a homemade desert at dinner-a particularly memorable one was the delicious apple/berry fruit crisp-with warm cream to pour over it. Can you tell how much I appreciated this? I made it a point to thank him before I left, full of genuine gratitude for the care I received.
Much to my surprise, I was able to relax into the experience fairly quickly. Many of the physical symptoms of anxiety dissipated and I was able to do yoga, meditate, be quiet, hike by myself in nature, connect with different types of people, and generally be calm. I was reminded of the connection to nature I had growing up in a small town in upstate New York, and then attending college in the beautiful enclave of western Massachusetts. I loved the quiet of nature and its power to induce pure emotion.
Importantly, I was able to connect to something else besides the “caregiver” role. Participating in “caretaking” of myself reminds me of the other things I am and aspiring to be which include, friend, wife, yogi, writer, president of Connecting to Cure, triathlete, runner, hiker, organizer, lover of nature, socializer, and, occasionally, a person who will take a chance and go on a yoga retreat not knowing anyone or anything about what to expect and find peace in nature and just relax.
