This post discusses caregiving stress, and how I made sense of my caregiving journey.
Table of Contents
Putting language around caregiving stress
I recently read a piece on Navigating the Transition into Caregiving that helped me put into language around the experience I have found myself in for the past four years. The sense of disorientation, the inability to connect with people in the ways that I used to, and the endless paradoxes, all were summed up so perfectly. Caregiving creates the scenario hwere, “It’s as if someone steals the script you have been working from your whole life.”
Starting in 2016 it became necessary for me to take on the role of caregiver for my family. One of my daughters became ill with autoimmune illness and mast cell activation syndrome; she was homebound, and her health deteriorated to the point where she was unable to get out of bed for two months. Soon after that, my husband needed open-heart surgery to correct a defective mitral valve, and he needed someone to take him to rehabilitative therapy appointments for several months. And at the same time, my other daughter became ill with several serious illnesses including Autoimmune Encephalitis (AE). She gradually lost 25% of her body weight, and eventually, she needed to be hospitalized. After that, she had a feeding tube placed and needed all her meals prepared in liquid form. She also had home-IV antibiotic infusions which required daily cares. She still needs dozens of medications prepared in syringes to be administered through her feeding tube each week, and now she has a port-a-cath and receives monthly immunoglobulin infusions, requiring around-the-clock care for several days per month. Throughout this four-year period, my energy has been devoted primarily to caregiving, and at times I have been pushed beyond my coping abilities.
Caregiving stress finds you
In their book on caregiving, Donna Thomson and Zachary White brought home for me the realization that nobody chooses caregiving, it finds you. “Being a caregiver is not something most people think or dream about, let alone prepare for, even though it’s a role many of us will inhabit, since there are approximately 43 million informal caregivers in the United States and 6.5 million caregivers in the United Kingdom. When a loved one becomes a caregiver everything changes, including responsibilities, beliefs, hopes, expectations, and relationships. Caregiving is always different than we imagine it to be, largely because so few of us think through our care roles in advance. The disorientation associated with these roles can be deep, intense, and isolating because it entails a series of paradoxes.”[i]
The paradoxes are many, including wanting and needing connection with others, while not having the time or energy to make it happen, and wanting others to know what you are going through, but being unable to bridge the gap between openly sharing and sharing inappropriately. A few months ago when I ran into someone at the grocery store who innocently asked, “how are you?” I broke down into choking sobs because there was so much to say, and the dam holding it all back could no longer hold it.
Caregiving stress is unseen
Thomson and White continued, “Unlike the taken-for-granted script that leads you to believe that willpower and love and desire can change almost any situation, your caregiving exists in the overlooked spaces of life where the language of doing and action are confronted by the ongoing realities of care, realities that require you to change the way you think and talk about your experiences.”
I have been confronted with the realities of caregiving and I have experienced the disorientation of trying to make sense of it. Again, Thomson and White say, “Although the friends and relations who surround you may be familiar, something is different. They are still recognizable, but the ways in which you interpret what they are saying (or not saying) may no longer make sense. If a caregiver could write a truthful letter to family and friends explaining this experience of disorientation, it might read like this:
‘I see when you’ve called, but I don’t have the energy to even listen to a voicemail message. It’s not that I don’t want to. It’s just that I feel like I can’t right now. I’m here, but I may not even answer the door if you come by. It’s not that I don’t want to. You want to help and for that, I am deeply grateful, but caring so deeply for someone I deeply love is changing me in ways I don’t know how to explain. I want to be called. I want you to text. I want you to want to come by, even though when you do I may not answer.’”
The ubiquity of caregiving
Luckily, most of us don’t all experience caregiving for several family members at once. But my generation is beginning to experience aging baby boomer parents, and the incidence of complex illness is increasing. It’s never too late to think about how you can care for yourself. Having a supportive online community, and a physical support group to attend (when caregiving doesn’t preclude it) has been lifesaving. Being able to openly share the challenges and the small joys with others who understand have made my caregiving journey bearable.
Finding support
Thomson and White say, “Reaching out and connecting with people who share common caregiving challenges is vital to the process of shaping personal growth and voicing experiences that allow you to explore meanings that may make no sense to your existing networks, but which are necessary to your evolving caregiver identity – meanings that move beyond good or bad, sadness or happiness, cure or recovery.”
I know that on a soul level, I chose caregiving, and the situation I find myself in is something I agreed to on a karmic level. The rewards of caregiving are rich, and I wouldn’t trade this “job” for anything, in terms of personal growth. But despite the fact that caring for a loved one is a growing trend it is outside our societal norm. Besides other parents of children with AE, there are few people who “get it,” and can give a knowing look or compassionate comment. Really, it’s nobody’s fault; it’s the people who have experienced losses as severe as I have who can meet me here in the void. And I wouldn’t wish that upon anyone.
[i] Thomson, Donna and White, Zachary, “Navigating the transformation from loved one to caregiver: Caring requires a radical opening-up to others,” openDemocracy: free thinking for the world, 4 June 2019, https://www.opendemocracy.net/en/transformation/navigating-transformation-loved-one-caregiver/
Intention
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