Today I kick off a five-part series on the task which has dominated the past four years of my life, caregiving. Before becoming Johanna’s full-time caregiver, I had never read about caregiving or talked to full-time caregivers. Everything I know about caregiving I learned from doing it. I’m not saying I discovered how to do it on my own or that it was a flawless process. Neither would I say I’m close to doing it with excellence each day. Nevertheless, I have learned many things through caregiving that I couldn’t have learned any other way. I plan to write at least five articles on this topic, and my first today on ‘Watching loved ones suffer’ seems the most visceral.
Before I begin, however, I want to briefly comment on my perceptions of the pervasive cultural and medical views on pain in our society. My comments here serve only to help explain my observations in the latter part of this article, and it is not my intention to engage in a cultural critique. One of the first few questions that medical professional will surely ask is ‘Do you have pain?’ or something very similar. This is an excellent question, and one of medicine’s compassionate and understandable aims is to relieve pain. But the question- ‘Do you have pain?’ -is informative about our views on pain as a society. It makes three things clear. First, it designates pain as of primary importance. Second, it acknowledges pain as something treatable. Third, it treats pain as something to eliminate. I think it’s not just the medical world that feels this way about pain. Modern day people live with more pain relief than ever, and there are increasingly more creative medicines and treatments to achieve that relief. We’ve come to expect a level of pain relief in our lives. This is a good thing.
Imagine the anguish, therefore, if your friend or loved one couldn’t get relief from their pain. Imagine the frustration of knowing there is nothing that can be taken to make the pain better-the agony of everyone else having something to help dull the pain, yet there being nothing that can be offered to one you love so much. This is the world I inhabit every day. Every day of my life during these past four years, my lovely wife has endured pain without the soothing effects of pain relief. I have seen her get a 14-inch PICC line inserted into her right arm with no anesthesia whatsoever (the first time the surgeon had ever done the procedure without it). She regularly endures migraines so severe she has vision impairments for weeks following. None of the medications she takes offer pain relief for these symptoms. Beyond these acute symptoms, Johanna endures daily bouts of intense stomach pain, headaches, and burning joint pain. I am well acquainted with her pain. It is a constant companion in our lives and will be until Jesus’ return (this could warrant a post of its own!).
There is a unique, ineffable pain in watching a loved one suffer. Our world sees pain as treatable, eliminate-able, and of primary importance. Yet caregivers of all varieties, not just me, are often confronted with pain and suffering they cannot fix. I know that if you have cared for a sick loved one for even a short amount of time, you can empathize with the inexpressible, burdensome sensation of watching them endure pain. That is why I wanted this to be my first post in the caregiving series. The experience of pain (called nociception in the science world) is pervasive and relatable. It is on the battleground of suffering that I write this post. I want to share some of the ways God has met me through four years of watching my wife suffer and offer a few suggestions for those of you who are also walking with loved ones through suffering.
These days I writhe on the inside when I see Johanna in pain, praying and hoping that God will help and sooth her pain. My insides are all a jumble, and I pray to God that he would be Johanna’s healing, strength, and hope. This is an improvement from the past. Early on in Johanna’s illness, I writhed on the outside. I got angry when she was in pain. I got scared when she was in pain. I was on ‘alert’ mode. I was agitated, irritable, and cranky. I took what she was feeling on the inside and showed the ugliness on the outside. The outcome was not good. I couldn’t love and care for Johanna well in this state. It made things worse for her. I have learned my outside ‘writhing’ is often not helpful to Johanna. Unfortunately, just knowing my outward anger and frustration with her suffering was unhelpful is not enough. It’s easy to express outwardly the misery of pain! This means inside ‘writhing’ is hard to do! For me it took the Lord’s merciful, intervening hand showing me that it was a matter of pride or humility. Was I humble enough to accept that suffering is attendant in the life of all humans (the Bible is full of it!) and that I am not, and never will be, Johanna’s rescuer, or panacea? Or was I too prideful and unwilling to accept that my anger, irritability, and crankiness were detrimental? I’m starting to get better at choosing the path of humility – accepting that I am not in control and that I am powerless to give the help I want to give. Chronic illness has taught me that human effort is insufficient while God’s effort is sufficient.
Another thing I have learned while caring for Johanna is the unhelpfulness of existential questions about suffering and the helpfulness of claiming God’s ascendancy and provision through suffering. It is of no benefit to me while Johanna is experiencing excruciating pain to ask God, ‘Why is this happening?’ It is of great benefit to me to say, ‘God is bigger than Johanna’s suffering, and he is able to provide sufficient strength for the next moment’. If I’m honest, I really don’t have a complete answer to suffering. I’m not saying I don’t have answers, but I have no holistic, comprehensive understanding of why Johanna is enduring such great and prolonged suffering. But I do have a complete answer to God’s triumph through suffering in Johanna’s life. God has proved himself sufficient for Johanna’s needs. He has proved himself sufficient for my needs. I think often of Jesus’ life. Jesus’ life is the Christian’s greatest weapon in combating suffering. Jesus’ life was filed with enormous mistreatment, suffering, and profound earthly failure. He had nails driven through his hands and feet, flesh ripped off his back, and his best friend’s abandonment as payment for his earthly work. What great encouragement I get from this and other biblical narratives filled with suffering. God is greater than our suffering, God is ascendant over the loud voice of suffering! He is bigger than what Johanna or I am going through! Use this phrase when you encounter suffering that threatens to crush you. It has been an enormous help to me.
Before I close this first post in my caregiving series, I want to offer a few statements on what I’ve learned to say when Johanna is going through pain. I will start by saying that nothing you read below is particularly profound. And for the record, I have said many unhelpful statements in the past, and still let others slip by even now. The most common phrase that I use when I am with Johanna as she suffers is, ‘I’m sorry’. This statement doesn’t feel particularly powerful, but I’ve found that when I’m witnessing Johanna’s pain, there aren’t often powerful words to be found. ‘I’m sorry’ carries a simple acknowledgement of her suffering and lets her know I’m aware of it. I use this phrase all the time. Another simple phrase I use is simply, ‘I love you’. This does not seem like an insightful statement, but it carries with it the powerful message that Johanna is cared for, that she is known and seen, and that her suffering does not change my deep love for her. I end this short set of statements with a non-statement. When Johanna shares with me the pain she is enduring, for example the excruciating migraines she sometimes gets, I often find myself making guttural noises. I caution the use of this technique if they don’t come naturally for you. What I mean by guttural noises are the simple sounds, like soft groaning or sighs, that you make while you are enduring pain yourself. I feel more connected with Johanna in her pain when I do this. I hurt when she hurts.
I hope to see you next week when I discuss the pervasive sense of self-doubt that I often feel as Johanna’s caregiver. I suspect you will be able to relate. Leave your comments below, and let me know other areas you would like me to write about in the coming weeks and months.
I’m sorry, Scott and Johanna. So powerfully written. Thank you for sharing.
I’m sorry that you both continue to suffer through so much pain and heartache but praise God you know the truth about Him and are firm on His foundation. Scott, I only taught with you at Hope for a few months but I could tell how much you loved teaching and I’m glad you can “teach” so many others through this outlet/blog. Continued love and prayers for both of you.
I mis giving you hugs in the hallway, Scott. You are a great man
I miss those hugs too! Blessings and patience to you at school 🙂
Thanks for sharing so openly, vulnerably, honestly and clearly scoSc. And thanks for being obedient to write even though it’s not your preference! Both you and Jo have said “yes” to many things through this journey that you would have preferred not to and I respect and admire you both for that. I look forward to continuing to read more!
I am sorry it has taken me so long to write in response to your blog. It makes me wonder what I said in your card. Forgive me if my comments were missing the mark. This will be a great help to us who have not experienced what you and Jo have gone through.
I can’t remember any of your comments ‘missing the mark’. I keep your cards in our personal letter drawer and they have only been encouraging! We received one from you over the holidays and I enjoyed it very much. In it you shared what you had been learning from James 1. It was an uplifting letter and we will remember to pray for you! Give a hello to you and your family, with love from Johanna and me.
I am living what you just wrote and felt all the feelings you have written. I have had the outward anger and frustration. Mostly I try to do the I’m sorry and I love you as I watch my mother in pain that I don’t think there is much relief for as she for whatever reason must endure. I have figured it is the road that is taken right now to get closer to God. It is comforting to read this and to know one is not alone on this path with a dear loved one. Thank you for posting this. God bless you both and all of the one you love!