caring on empty: the effects of ctcs in caregiving
Caregiving trauma is a profound and most often invisible wound worn by those who dedicate themselves to caring for their loved ones in need. It goes beyond the exhausting physical demands of caregiving, delving deep into the abstruse emotional and psychological realms of the human experience.
what is chronic traumatic caregiver stress?
Chronic Traumatic Caregiver Stress (CTCS) is the term I use to describe the wound caregivers carry, who have entered into a realm of chronic uncertainty, who are shell-shocked—stunned into emotional turmoil by witnessing chronic pain and suffering of a loved one with no end in sight. It is the constant, overwhelming stress we are unable to process.
The grief we typically feel after losing a loved one doesn’t even begin to define the torture experienced by parents who witness their children suffer from debilitating diseases. Nor does it explain the ambiguity and uncertainty experienced in fighting an illness with no known cure. There is no expiry date for CTCS. It is constant.
Witnessing the decline of our loved one’s health, grappling with impossible decisions, and navigating the complexities of healthcare systems all contribute to the emotional strain of caregiving trauma.
It occurs when a caregiver takes on the emotional stress and trauma of a person within their care. Chronic, unrelenting stress often goes undetected. We become a master magician and ignore our suffering. We hide our burden for fear of judgment and undergo guilt for thinking of our own needs when our babies are fighting for their lives. We put our health and happiness on the back burner, which over time can manifest in dis-ease of our own if left untendered.
more than PTSD
Even those who do not inhabit the world of caregiving are familiar with PTSD. There is a global understanding of post-traumatic stress disorder and how serious and pervasive it is in our world where traumatic events are happening so often.
We hold empathy for those who live in war zones. We grieved for our friends, family, co-workers, and even strangers who died from Covid-19. Our hearts ache from seeing stories of children dying from starvation in third-world countries. Yet, so many turn a blind eye to the travesty happening right in front of them. Not because they don’t care, but because grief is considered part-time. Something you will eventually get over.
Well-renowned author, Gabor Mate states, “Trauma is the wound that you sustained as a result of what happens to you. Trauma is not what happens to you.” CTCS is the wound we carry from past, present, and future trauma. Our trauma is relentless.
Providing care for a family member is among the main factors that cause PTSD. Providing long-term care for your child for the foreseeable future can cause CTCS.
causes of ctcs:
- Caring for a loved one who suffers from a chronic illness, disease, and, or disability.
- Witnessing the physical and emotional trauma associated with your loved one’s disease.
- Exposure to constant fear. Surviving in an elevated stress response long term.
stress response:
Our body has a built-in, physiological response to acute stress—the stress response. When we perceive a fearful or threatening event, the body engages in an automatic response that either confronts the threat, freezes up, or flees from the threat (hence the term “fight-flight-freeze response”).
There is an instantaneous surge in heart rate, blood pressure, sweating, breathing, and metabolism, and a tensing of muscles. Enhanced cardiac output and accelerated metabolism are essential to mobilizing for action.
Psychologically, attention is concentrated on the threat. After people experience trauma, they become more vigilant for new threats and perceive constant threats in their environment based on assumed danger (due to intrusive memories or dreams, and exposure to constant crisis), and therefore experience the acute stress response more frequently than before.
Caregivers often experience markedly different PTSD symptoms compared to other people living with PTSD. These symptoms include:
Increased levels of anxiety – this includes night terrors, particularly when caregivers are exposed to continuous crises requiring emergency medical help. Lack of sleep due to 24-7 care. calls from healthcare providers about their loved one’s condition. Never able to switch off as you are your child provider. You are always on high alert.
Physical pain and emotional anguish – many parents report physical aches and pains that don’t seem to go away. They experience headaches, GI complications, chronic headaches, muscle tension and fatigue, and thoughts of hopelessness.
Reliving the experience – many caregivers experience flashbacks – they have horrific memories on repeat when their loved one was very ill and are unable to get disturbing images out of their mind. During flashback episodes, many people feel they are losing their loved one all over again.
Emotional detachment – this is a survival mode. Many studies reveal that family caregivers often experience numbness and separation from family and friends. They feel empty and numb even during moments of crisis. Caregivers are also at increased risk of suicide.
Repeated exposure to a stressful situation (like caregiving) can create an acute stress response where people go on to develop a condition called Acute Stress Disorder. Dissociative symptoms can occur at any time after witnessing a traumatic event, with chronic overwhelm, and exposed to constant stress.
dissociative symptoms:
Derealization – this is when an individual’s environment seems strange or unreal.
Depersonalization occurs when people’s emotions or thoughts don’t seem real or feel as though their feelings and ideas don’t belong to them.
Feelings of numbness and detachment – this may include emotional unresponsiveness.
Dissociative amnesia – this occurs when the person cannot remember important aspects of the traumatic event.
fear
The physical manifestation of caregiving trauma is like taking a sleeping pill and drinking a shot of caffeine at the same time. We are exhausted, hanging by a thread, yet somehow muster the energy to keep going. The sensation of needing to “do something” arises from fear. Fear of not doing enough. Fear of losing our loved one. Fear of not being enough. Fear of slowing down just a little and knowing our pain will set it, and fear of failing the one we love.
Our work is exhausting and comes from the total exertion of our physical, mental, emotional, and spiritual energies. We give every ounce of strength we can muster to be prepared. We need to outthink, outsmart, and anticipate the possibility of another crisis. Because, ultimately there will be another crisis; there always is.
blame game
The caregiving journey is tangled with moments of profound love and immense pain. We feel our loved ones suffering and we wear the wounds of an endless battle that manifests from chronic fear, grief, loss, overwhelm, fatigue, anger, shame, guilt, and blame.
This emotional strain manifests in various ways, from feelings of anxiety and depression to overwhelming guilt and resentment. Caregivers find themselves torn between their ‘duty’ to provide care and tending to their own mental and emotional needs. The weight of responsibility is isolating, causing a deep loneliness and emotional exhaustion that is difficult to articulate to others.
loneliness
Psychological distress associated with caregiving is understated and taken for granted, and as a result, family caregivers are frequently overlooked by the healthcare profession, extended family members, friends, work colleagues, and society in general.
Despite an unwavering dedication, most caregivers struggle silently, feeling unsupported and ignored. We often exist in a marginalized, discriminated against, and stigmatized community. To transform this prejudiced narrative, and to gain the understanding and compassion needed from our communities, healthcare systems, and society in general, it requires vulnerability and courage to share our stories. This starts with you sharing your story and why I am so passionate about raising awareness about Chronic Traumatic Caregiver Stress⎯CTCS.
Remember you deserve to live a healthy vibrant life full of happiness and love!
❤︎ Amanda