I live by a 2-day week. Day one is ‘chuck-roast’ day. Day two is ‘cucumber salad’ day. These are the two meals that Johanna can eat, and between them is the entirety of Johanna’s diet. All 12 foods. Between these two days I spend at least eight hours driving to co-ops, shopping for specific foods, and cooking. I am such a regular customer at the co-ops that I know nearly every worker by name and have some of their personal cell numbers [Shout out to John if you’re reading my blog]. I even once got let into the store when it closed early due to snow because without buying food I would’ve had no way to feed Johanna that night. You know you really have a strange life when you are getting to know the employees of your grocery stores more than just about anyone else. Preparing food for Johanna is a continuous process. I cook when I am well and when I am sick and always with a very special particulate mask to protect Johanna’s food.
On each of the days during my 2-day week, I also care for Johanna physically. The only exceptions are times when her sister, Bekah, is able to help or when her mother, Gail, is here, but even then, I still do the cooking every day. I am not going to spend much time describing the physical caregiving details to you. It involves many practical routines such as mixing medicines, bathroom cleaning, blanket folding, table wiping, readying for bed, and lots and lots of waiting. It takes hours to do all these things, and the work is very unexciting, even tedious. A lot of days I also wash Johanna’s laundry, call her compounding pharmacy, and replace filters in our air system. I have two ‘City of Minneapolis’ trash cans because of the vast number of filters I use and dispose of each month. Most everything I do to care for Johanna is repetitive. It’s non-stop and has been that way for the past nine-months especially, and for the past few years generally. Caregiving is monotony.
To be honest, I sometimes feel like I’m going from task to task, just doing the next thing. I’m relieved to be done with one thing, but that’s short-lived because “another thing” is always just around the corner. It’s “survival mode.” I’m surviving. While I’m surviving, I have a hard time connecting what I’m doing to deeper realities. I find myself making mental checklists of things I need to do, eagerly anticipating checking an item off the list, only to know more of the same is coming. Even though these monotonous tasks are repetitive and time-consuming, my soul is still feeding on the environment and stimuli around me. Whether I’m aware of it or not, my heart is always absorbing something, and so I’ve been left wondering, “How does God fit in to the daily grind of caregiving?”
God’s presence and help are always nearby, but I’ve had to learn ways to remind myself of this. I’ve had to foster new practical disciplines – tangible ways to nourish my soul during the monotony. One way I’ve been able to add truth and meaning to some of these repetitive caregiving tasks is by memorizing Bible verses and passages. It’s something I wouldn’t have started without my wife’s encouragement. During Johanna’s daily medicine and hygiene routines, I spend a lot of time waiting. I’m often ‘on call’ and need to be ready in a moment’s notice to help. Johanna encouraged me to use this waiting time to memorize Bible verses, instead of using my phone for what I often do – checking the news, checking email, etc. (my phone can be such a distraction…). We started this discipline by memorizing the same passage together, but after we finished that one, I kept going on my own, reviewing verses I had memorized years ago in college, eventually learning new ones.
Although I don’t always enjoy it, memorizing verses and passages in the Bible has been immensely helpful in unexpected ways. Having passages memorized has allowed me to ‘read’ the Bible in places I normally wouldn’t be able to. It allows me to reflect on verses while doing the monotonous tasks of caregiving! I carry them with me wherever I am. It’s been fountain of water in a dry place for me. It’s even given me a drive to memorize more and more, helping me understand Jesus’s words in deeper ways (I’ve currently been working on the book of Luke). For those doing monotonous tasks (which is everyone in different measure), I encourage you to find 10-15 minutes a day to put some passages to memory. Then, if possible, practice them in those monotonous moments, filling your heart and mind with enduring truths and meaning amidst the most monotonous tasks. It still feels like work each time I do it, and it certainly would be easy to distract myself with something else, but it’s been a deep blessing to me.
A final thought I have about the monotony of caregiving is that it serves as a helpful contrast to eternal realities. Caregiving is hard. It’s repetitive. I wish Johanna was well and that I didn’t need to do so many tasks each day. In these repetitive moments it’s easy to think, ‘I was meant for so much more’. I don’t mean that I deserve novelty (I don’t), or that I ought to be doing something else (I don’t think I should!), but just that there is more to my life, and everyone’s life, than a series of meaningless, endlessly repeating tasks. My life has meaning and purpose even in the monotony of caregiving. I was made for more than cleaning, folding, wiping, cooking, and waiting. I am thankful for the monotony of caregiving because it juxtaposes my current realities to future eternal realities. By it, I see the beauty of my future with God more clearly, and I’m filled with longing and hope. Surprisingly, instead of monotony remaining something to endure and tolerate, God has used it to teach me, bless me, and help me see more of Himself.
I know I’m not alone in experiencing monotony daily, so please leave comments, questions, or even your own helpful hints below and join me next week as I discuss the loneliness and isolation of caregiving. See you then!
Thank you for sharing! I understand the motonony you feel. Although my health is improving now, I had 15 years of difficult health. I, too, would help ease the ache of the monotony and feeling of not living as I wanted with reading from wonderful authors who understood suffering as well as connecting with those currently suffering. I also practiced distraction techniques, memorized scripture, and was reminded of my eternal home. Know you are not alone in this even though it may feel you are. Others have travelled this road before you. It can be done one day at a time, with an eternal perspective, and support of others through friends, books, podcasts, etc… There is a light at the end of the tunnel! Keep plodding on. ❤️❤️
Thanks Rhonda! One day at a time is a mantra around our house, sometimes even one hour at a time.
I recently heard a lecture by Fr. Zacharias Zacharou, the Abbot of an Orthodox Monastery in Essex, England. He asked the audience what the greatest commandment was in the Gospels, and predictably, the audience said, “Thou shalt love the Lord thy God with all thy heart, with all thy mind, with all thy soul, and with all thy strength.” He said, “No.” So then they said, “You shall love your neighbor as yourself.” Again, he said, “No.” He had been taught by his own holy elder (Fr. Sophrony Sakarov) that the greatest commandment was in fact to be found in the Gospel of Luke. “When you have done all those things which you are commanded to do, say, ‘We are unworthy slaves; we have only done our duty'” (Luke 17:10). In other words, as Christians, we were made to serve Christ, and one the best ways we can do this is by serving our fellow man. We were not made to achieve anything in this world, or to fulfill ourselves as modern culture would have us believe. There is nothing greater we can do with our lives than to serve Christ by serving our neighbors. In our service to others, we are serving Christ Himself (Matthew 25:31-36). How could anything we do in this world be more important or fulfilling than that! And yes, it is a form of Martyrdom. We must sacrifice our own life if we wish to live a life in and for Christ (Luke 9:23-25).
Memorizing scriptural passages during monotonous chores is such a fantastic thing to do. Another thing you might explore is practicing a very short prayer that can be repeated over and over. I have found this to be especially helpful when I don’t have the mental energy for memorization work. In the Orthodox Church, we have a long tradition, which goes all the way back to Saint Paul who said, “I would rather speak five words with my mind than ten thousand words in another tongue” (1 Corinthians 14:19), of doing what’s known as the “Jesus Prayer.” The words of the Jesus Prayer are exactly five words in Greek (but seven in English). “Lord Jesus Christ, have mercy on me.” The Desert Fathers of the Church, beginning in the 300-400s AD, were the first to write explicitly about this type of prayer. They also took specific lines from the Psalms and used them in the same manner. While weaving baskets, or doing some other work that did not require mental attention, they would simple repeat this type of short prayer. A modern classic on the Jesus Prayer is The Way of a Pilgrim. The author is anonymous, but it is believed to have been written by a Russian Orthodox priest in the Nineteenth century. It’s very inspiring.
May God reward you for all that you give of yourself to your beautiful and courageous wife.
Thanks for this encouragement!
I wondered how you both are doing so I’ve been catching up on your blog. I understand some of what you discuss here having cared for two kids and washed the same laundry and dishes and diapers etc. The encouragement I’ve gotten in the past four years has come from Podcasts (Don’t Mom Alone & Risen Motherhood are my faves). I always appreciate their encouragement to focus on what the Gospel speaks into the monotonous task (pray for the child whose clothing you are folding or knowing that God sees what is done in secret and that we work, ultimately, for Him and not for praise.). I wish I could explain my thoughts better but we are on our 9th snowday here in Iowa and my kids are going crazy. I’m sure some of what you deal with would overlap for caring for children except that as moms we can dream of the day that the child will not need so much help and you don’t have that guarantee with Joanna’s health. Praying for you both that God would sustain and encourage you both in this valley.
Hi Erica! I don’t know what it’s like to be a parent, but as I was writing this I was actually thinking about parents. I’m glad you made that connection, too :). Parents lives can be incredibly monotonous, and it reminds me why agricultural metaphors abound in the Bible. It’s only in our modern world that we trear monotony as avoidable. The real test is to believe that our day in and day out, hard work monotony has meaning, even when we can’t see to the other side. Thank you for praying for us! I hope you and your kids stay sane in this midwestern mountain of snow.