The Loneliness of Caregiving: From Fairytale to Nightmare and Back Again
It was probably my first time in the private nursing room on the N.I.C.U. that I felt the overwhelming wave of anger take over my system.
When other new moms were learning how to breastfeed, I sat alone using a pump as my newborn lie in the high-intensity room on life support.
Why was this happening to him? To us? To me? This wasn't fair, it is not how the fairy tales told me it would be.
So alone I would sit while other moms nursed their babies, held their babies and took their babies home. I had no one to talk to, no one who understood and no one that could make it any better.
I was alone in caregiving, at the hospital and again at home. Now don't get me wrong, I considered it an honor to care for Jack and a privilege to be his full-time nurse and mother, but it was a lonely journey for the first year.
Isolation began when it became apparent that our ability to venture outside the home was so much more taxing and laborious than it was for other parents. As a mom, the isolation continued when others gawked as I was tube feeding my son or clearing his trachea with a machine.
When the height of cold and flu season came about, the isolation only increased. Jack’s ability to stay healthy became difficult as germs and viruses ran rampant, so we remained indoors most of the time.
Depression and isolation quickly set in. People would come and visit Jack, therapists would make their rounds, but physically I was becoming sedentary and afraid of the world.
On days when my husband would encourage me to get outside, I would quickly return as I hated the way I smelled of earth and sun and wind. It wasn’t the sterile smell I had become accustomed to and therefore felt uncomfortable in it.
My family noticed my withdrawal and tried to get me involved in activities. They enrolled me in an art class and even bought all the materials I needed for success. The night of the first class I panicked as I had not been around groups for so long. Looking back now, it was an agoraphobic type reaction to the world. I ended up not going.
My life and world had become so small in the past 6 months, comprised only of sterile hospital rooms, sterile hospital visits, sterile doctor visits, and sterile medical equipment.
Physically I was secluded, emotionally I was isolated and the combination created an overwhelming sense of loneliness.
I found myself avoiding phone calls, meeting up with friends, even being social with family when they would come to visit. I quickly retreated to the comfort zone of Jack’s room where I would tend to the tasks at hand and be alone, once again.
As I look back at my actions and examine the feelings and discomfort around others that emerged so quickly after bringing Jack home, I wonder if it was my way of dealing with resentment. There is no doubt that I was mad at what was happening.
It wasn’t fair and I was mad. I believe now that this resentment and physical detachment from the big wide world manifested itself in my desire to find some sense of purpose, as small as it may have been at the time. I must have chosen isolation over all other ways of being because it was safe, I was protected and I could justify that I was doing something… anything for this small child that I brought into the world.
As a caregiver, I believe that the vulnerability of Jack’s health and my resentment over the less than ideal situation lead to the severe loneliness that manifested itself in unconscious attempts at seclusion and withdrawal. It was a vicious cycle I found myself in that no one could rescue me from. The lonelier I felt, the more I withdrew and would hide away avoiding others, which in turn lead to more loneliness.
So, what broke the cycle that had me on a downward spiral? Sleep and time with my husband.
Fortunately for me, I had nursing help during the midnight hours. I was able to get a full 7 hours of rest each night, a luxury I know many caregivers do not have. This gave me time to be with my husband and a chance to recharge, if only for a small time in my own bedroom.
Needless to say, this led to my second pregnancy. My daughter was born 11 months after Jack came home from the hospital. She was healthy, happy and beautiful. I had the fairy tale birth of a child, in my own hospital room with her by my side: sleeping, crying and feeding.
When she came home, she created normalcy in our lives. She gave us a focus on family rather than a focus on illness and fear. She taught Jack so much, as Irish twins, such as eat by mouth, play, communicate and become social.
Loneliness was no longer an issue as I had more than enough to juggle in my everyday life. I had to be vulnerable to ask for the help that was so desperately needed. This forced me to get out, expose Jack to the world and raise my children like siblings that would learn so much from each other.
February 1, 2012, I took my son to the doctor after noticing that he had lost weight. I was able to tell because I was able to see the bones in his wrist more prominently. We were sent to the urgent care and learned that they believed that he had Type 1 Diabetes. We would have to wait for the official diagnosis once we got admitted to a hospital. They were in search of a hospital in the area that would take a child with T1D. It ended up that he was admitted to a hospital in Chicago and we lived in Northwest Indiana. We were ushered out of the urgent care into the ambulance and to the hospital.
We had just moved to Indiana. We had lived here maybe 2 years before he was diagnosed. We moved here because of my work and we really didn’t know anyone here.
While at the urgent care, I called my ex-husband who lived in this area as well and told him what was going on. He picked up our daughter and came out to the hospital.
My son spent the next four days in the hospital while we learned how to count carbs do complicated mathematical problems and learn a whole new way of life.
When we finally left the hospital and came home I felt so alone. How am I going to manage to keep my son alive? How am I going to do this on my own? I was so afraid.
I understand what it is like to be lonely in caregiving. There is the feeling of being in the situation all by yourself. You feel isolated and often misunderstood. Friends do not seem to talk your language anymore and they fail to call or stop by, at a pace that is not seen at first until they are gone.
I remember the feeling of just being able to make it through the day. The day often started with me in the shower crying. I knew I needed support but was unable to find it in the no man's land of northwest Indiana. That is when I took to the internet. There had to be others, but where to look.
I began the search for blogs and websites, I didn’t find much. To be honest, I am not sure what keywords I was using at the time, but there really didn’t seem to be much. This led me to create a podcast. Crazy idea for someone who had never done this before. I thought this may be the thing I need to force me to find the people that I needed. So in January of 2013 I began podcasting, my first podcast had me terrified. What was I doing? Who am I to do this? Guess what, I didn’t really care I loved it! It began to give me purpose. It helped to understand that I wasn’t alone and that what I was feeling was NORMAL!
When you are isolated it is so hard to know if what you are feeling is normal. As a caregiver, I felt angry, fearful and resentment. These are tough feelings to keep to yourself. Once I started to understand through my conversations with other caregivers that this was normal, I believe that my anxiety reduced and I no longer felt as alone as I did before.
The journey through caregiving is a roller coaster ride. Full of ups and downs. It is not a journey to do on your own. It is one in which we need a village to hold us up, help us to feel normal and find the joy.
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