“I have no friend, Margaret: when I am glowing with the enthusiasm of success, there will be none to participate my joy; if I am assailed by disappointment, no one will endeavor to sustain me in dejection.”
-Robert Walton in a letter to his sister, Margaret, from the novel Frankenstein
Caregiving is unchosen isolation. Illness, disease, and disability call for a caregiver’s time and attention and the ensuing loneliness and isolation they bring are heavy burdens. While it’s not true that I don’t have friends, circumstances and life changes can make us feel like Robert Walton in Frankenstein. There’s often no one around to immediately share in my trials or joys.
This is a sensitive topic for me because not only is it deeply personal, but it also naturally involves my relationships with family and friends. I’d like to make it clear to everyone reading this that I have been wonderfully cared for over the years amidst our difficult situation. It is not my intention to make anyone feel bad, but rather to simply describe what I suspect is normal in just about every caregiver’s life.
Our situation is remarkably isolating and as much as I share about it for myself, know it is especially more so for Johanna. She has not left her space a single time except to go to the doctor or hospital for over three years. With this disclaimer out of the way, it is still very true to say that there is no aspect of my own life that has not been dramatically changed by Johanna’s illness. I am always close to home to care for my wife and have only left the state of Minnesota once in the past three years to attend my brothers’ wedding (and that for less than 48 hours). I avoid certain restaurants, stores, and foods, even campfires, to avoid picking up smells that could dangerously trigger Johanna when I care for her. I am no longer able to go out in the world as most people do. Therefore, the world must come to me. And even when they come to me they have to be following all sorts of strange protocols to make their visit safe. My dear friends who help me cook use the same deodorant as Johanna and myself. They use the same soaps and detergents. They avoid visiting or helping if they’ve been around strong smells. They change into my clothes kept at my house and washed in our own washing machine to avoid bringing in anything that could affect Johanna’s food. Helping me requires more than just one’s time, it requires planning and life-changing actions, even sacrifice. I am immensely, immeasurably grateful for the help of my friends who for years have given of their time, energy, money, and sometimes even sanity to help make my life a bit less isolated. Nevertheless, I am alone at home, away from my wife, the majority of the time. I experience loneliness and isolation on a daily basis.
Caregiving is lonely because what I spend most of my time doing is done away from the world. When I was able to teach, a lot of what I did at work was around hundreds of people. There was sense of community around my profession and I enjoyed the camaraderie of being around others. There was even a sense of forward progress and growth. It’s different here at our house. We’re in stasis. We’re intentionally shut off from the world because the world is a dangerous place for Johanna and therefore vicariously dangerous for me. My actions and daily life are less visible to others than ever. I feel cut off from the joys of having dozens of interactions with my community each day, from having what I do be seen by others. It’s not about recognition, but rather about feeling daily connected deeply to the world around me. Most days no one is brushing shoulders with me when I walk back upstairs after a long night of cooking. No one sees the strange act of changing carbon filters, and no one is waiting in the car with me as I drive each day to get food for my wife. The daily life of a caregiver for the chronically ill can feel like a dam in the river of community. It’s dry on the other side. This is why I continually think about some of Jesus’ words in the gospels. One particular one reminds me, although it is about prayer in this instance, that God sees what we do, even if no one else does. “But when you pray, go into your room and shut the door and pray to your Father who is in secret. And your Father who sees in secret will reward you.” No matter how cloistered we feel here at our house, we know that God sees what we do and what each day holds.
Caregiving is also isolating because it eradicates a significant portion of your community. Relationships change. Friendships wither. Family dynamics change. Acquaintances are hardly even seen anymore. Caregivers simply no longer have the freedom to schedule and remain flexible. They are now responsible for maintaining more than their own life, and this takes an enormous amount of time and energy. The truth is I don’t get to see my friends and family regularly unless they come to me. And as I mentioned above, even then it is only on our terms – our strange terms necessitated by the needs of our situation. I don’t have the flexibility to leave my house when I want to anymore. These freedoms left with Johanna’s health (and hers changed even more). It has been a joy, therefore, to see friends who have pulled close towards me, changing their lives to continue staying part of mine. It has been painful to see how others have not. It has been a long process for me to come to terms with how my community has changed. In the beginning, I grieved the loss of my larger community. I missed the regularity of seeing friends and felt hurt by friends who were now at a distance. It is still hard for me, but God has helped me open my hands and trust that He will provide for my needs. He has and will continue to meet me in the lonely places.
What may be the most painful part of the loneliness in caregiving is how it dramatically changes relationships to loved ones, especially if they are the recipient of your care. I love being with Johanna, but our life looks nothing like a typical couple’s. It doesn’t even look anything like our relationship at the beginning of our marriage. Our everyday interactions border on the bizarre. I enter her space through an airlock each day and wear clothes only kept in her space to limit outside contaminants. I am continuously washing my hands and always have a special mask on while in her space. I have to be careful how close I get to her, monitoring her comfort carefully and making sure my presence is not causing her to react. I wish it weren’t so. I long for days when Johanna and I can even do simple things together again, like sleep in the same bed, and go for a walk outside. Our relational dynamic has changed greatly. Johanna is no longer just a spouse and best friend, she is now a disabled woman dependent on my care, living alone downstairs in our house. I am no longer just a spouse and best friend, I am now an able-bodied man caring for a disabled woman, living in the upstairs of our house. We’ve had to learn, and are still learning, how to navigate these changes and how to maintain a healthy marriage amidst the brokenness. Though I am lonely as I write alone upstairs and Johanna is lonely as she eats alone in her room, we know that God’s presence and help will teach us how to love one another each day.
I’ve learned a lot, too, through all of this. I’ve had to learn that I can’t do this alone, not even close. I’ve learned to ask for more help than I could ever have dreamed. I’ve learned the vulnerability of asking people for help – the joy when some lay down their time and preferences to help and the sadness when others don’t. Community doesn’t end when you become a full-time caregiver, but it does require more intention. God has brought us thus far and will continue to lead us day by day. He has made me feel known, seen, and has made himself tangibly present, especially when I’m alone.
I’ve really enjoyed reading your comments and thoughts over the past few weeks. Please keep telling me what’s on your mind as you read these posts! See you next week. Thank you to ALL of you have given extremely generously. Check out our support page for updates.
Hi Scott!
Thank you for taking the time and making the effort to share your experiences and the lessons you are learning in the midst of circumstances in His wisdom and love the Lord has designed for you and for Johanna.
I suffer from chronic pain (peripheral sensory neuropathy). Although my condition is not as serious as that of your beautiful wife, I often need help and reading your blog encourages me to trust in the Lord and to be more grateful for the people who take care of me.
Again, thank you for writing you have a beautiful gift, your style is nice and close.
I will be praying for you and for Johanna!
May the Lord strengthen you.
Raquel
P.S. I do not speak English so I translated this into Google Translator … then, please forgive for the mistakes!
I’m so glad you stopped by! What you said was perfectly understandable!
Beautifully written.
I have no idea of this quote will be at all helpful to you, but I think it apllies to both the sick and those who suffer with them through care-giving.
We get sick and we suffer for different reasons, but often it’s because we have sinned, voluntary or involuntary, or because we have wandered away from God. But, if you are sick, don’t be afraid and don’t worry because sickness is a great gift from God. The sick are God’s special children. The sick are under God’s special protection. They have God’s special blessing. They have God’s love. They are in His embrace, whereas someone who has health might not be. The sick person, the suffering person, the person with illness is in a privileged place, or a potentially privileged place, with respect to God. Those who have never known sickness, and those who have never known suffering, often have a lack of empathy; and often their heart is narrow and small and restricted, and not able to open up and embrace the suffering of others because they just don’t know it. The sick, on the other hand, are often the most loving and understanding and compassionate people that you will ever meet, and they are the ones who will have boldness before God in their prayers for others.
So don’t be afraid of your illness. Leave it to God. Do what the doctors tell you. When you take your medication, you receive Christ. It’s not bad, or a sign of a lack of faith, to take your medication. When you take your medication, you are receiving a blessing, you are receiving Christ Himself. Do what the doctors say, take your medications, go for your tests, but have no anxiety. Sometimes what’s worse than being sick is being afraid of getting sick. Leave it to God. Whatever God gives you is best for you. God never gives you a Cross without first weighing and measuring it very carefully to make sure that the Cross will result in your spiritual growth. So don’t think it’s random, don’t think it’s chance, don’t think it’s too much. It’s been very carefully weighed and very carefully measured, so that it will result in in spiritual growth and spiritual benefit.
As much as the body wastes away, that much is our life in God renewed. God cannot be born within us without birth pangs. And the suffering that we experience, whether it’s emotional suffering or physical suffering, these are the birth pangs, the travail, the suffering in our life that will enable God to be born and to grow within us. So we should fee pity for the person who has not tasted involuntary pain because that person is not likely to impose upon himself a sufficient amount of voluntary pain. So feel pity for the person who does not know involuntary pain because they’re not going to inflict it on themselves. They’re going to want to stay in their comfortable place, their comfort-zone, and they’re going to resist all kinds of change. Sickness is a visitation from God, a divine visitation. Sickness humbles us, it teaches us, it reshapes us, it awakens us to reality, it enables us to see what is truly important and of value. It is not a punishment, but a divine visitation for our correction and education.
—Elder Aimilianos, former Abbot of Simonopetra Monastery, Mount Athos, Greece
From: A lecture entitled, “Blessed are the Pure in Heart: Reflections on the Spiritual Nature of Suffering,” by Father Maximos Constas, Patristic Nectar Publications (2017).
Thank you for sharing. I understand isolation and loneliness due to illness and know how wonderful it feels when others go out of their way to do simple tasks, and also the feeling when those you thought would, don’t. It’s a hard road to walk oftentimes, needing help but not sure how much help to ask for. God is with you both. He sees your acts and doesn’t forget.
Just a short note—- thank YOU for sharing your life with those around you, people you have never met but are praying for you and your wife and thinking of you. I found myself thinking of you two today and wondering…. and so I looked you up. We have a lot in common, our mutual faith in Jesus, and our weddings were in the same year. And then our lives look SO different from there. But because you share, I can pray and be a part of this fight for health. And my heart breaks that you two cannot physically be together. I read a number of the caringbridge entries, then these, and wow what highs and lows you have been on together. My heart broke for you when I read you could not even be in the same room, and I grew cautiously optimistic at reading that you now can carefully care for Johanna quickly (but in the same room!). May God give you both strength and comfort every moment as we pray and hope for an uptick in Johanna’s physical health. And may you, Scott, find the rest and strength to continue in this path that has been carved out for you.