“I started grieving my loved one’s death long before they had passed away. No one prepared me, I couldn’t find real experiences of those who have gone through it before and the limited information was isolating and suffocating…”
Talking about death, preparing for death, watching the dying process brings out the most vulnerable parts of people. While one hopes that they are able to be there for a loved one during the dying process, nothing quite prepares you and nothing feels natural nor normal about it.
“Signing the ‘Do Not Resuscitate’ form, changing adult diapers, pre-planning a funeral, frequent ambulance rides and my loved one forgetting who I was, was just some of the many experiences I went through in my parent’s dying process…”
What does Compassion Fatigue mean? and what are the causes?
Compassion fatigue, also known as secondary trauma stress disorder, is the physical and emotional exhaustion a caregiver experiences that leads to their inability to empathize or feel compassion. Family caregivers are highly susceptible to compassion fatigue and can burnout when caring for loved ones in the dying process due to the intense, intimate and emotional care they provide.
5 personal lessons for family caregivers – what nobody openly admits:
- “The hardest part was grieving and missing the loved one before they are gone”: Within the dying process, the loved one starts to lose the parts of them that made them, them. Unique qualities like the loved ones humour, or laugh, or quirks start to fade or change in the dying process – making them less familiar. The caregiver will start to notice the changes and often grieves the changes as the loved one progresses in the dying process.
- “I was on high alert all the time – survival mode”: There is no planning or predictability because the dying process doesn’t follow an expected pattern. Life is lived in the two extremes of being mundane with the routine of caring and then remaining on high alert for the unexpected and expected challenges in the process.
- “I don’t know what I am doing – always second guessing”: Mental health professionals such as hospice nurses, doctors and psychologists are trained and educated to cope, understand and support those in the dying process. Yet, even these professionals show a high prevalence for compassion fatigue. How much more vulnerable are family caregivers who need to cope and make sense of the dying process with no training and a lack of available information and support?
- “Planning and discussing death feels uncomfortable”: Discussing death is usually difficult for both you and your dying loved one. Caregivers sit with the uncertainty of whether they should be discussing death with their dying loved one or not. Caregivers are also confronted with their own personal feelings and thoughts about death and life. How do you ensure that you do not overburden the dying with your own fears of death?
- “Caring is a selfless, unappreciated role….”: While caregivers don’t assume this role for recognition or appreciation, it is not unusual for the caregiver to feel unappreciated. The loved one being cared for often cannot comprehend what sacrifices, demands or burdens are placed on the caregiver in the process. It is normal for caregivers to want their dying loved one to show appreciation or recognition of the sacrifices made, despite this need never truly being met.
4 personal lessons for family, friends and colleagues of family caregivers – the ugly truth:
- “Visitors don’t realise the burden they place on the caregiver”: Part of the dying process is that many family and friends will come and visit. Often these visitors are wanting to pray, cry and reminisce as part of their own grieving process. For the caregiver, having to hold these conversations, hold the emotions of visitors, helping visitors make sense of the process – is often too much. Visitors are often focused on their own grieving process and don’t have the capacity to understand it from the caregiver’s perspective.
- “No one allows you to express how draining and joyless caring can be”: Often compassion fatigue symptoms aren’t even recognized as family caregivers suffer in silence. People who mean well, often don’t allow caregivers to express the hardship, the burden, the resentment. Caregivers feel guilty for feeling this way and further isolated because those around don’t understand or they’re quick to remind you to ‘be grateful’ and ‘what a privilege it is’. So many caregivers learn to suppress and deny their feelings as they continue to care for loved ones.
- “I felt isolated, unsupported and misunderstood”: If you haven’t experienced caring for a dying loved one, it is quite difficult to really understand the process or rollercoaster of emotion. This makes it difficult for friends, colleagues & extended family to truly understand what you are experiencing on a relentless, daily basis. Often caregivers feel unsupported because they are uncertain of what they need or how others could assist them, leaving caregivers trapped and isolated. As such, caregivers often lose many close relationships while caring for their dying loved one.
- “I felt guilty for being happy… I hated that I had to behave the way others expected”: Many caregivers know that their grieving process is unique. Society, family, friends and other loved ones who may want to show compassion and have well-meaning intentions, may place further pressure on the caregiver when remarks, comments or advice imply that grieving should look a particular way. Within the dying process, caregivers are allowed to have other things in their life that bring meaning, happiness and excitement. There isn’t a correct way to grieve or live while caring for the dying.
Compassion Fatigue Symptoms: Do you or someone you know have Compassion Fatigue?
If you are a caregiver and you are noticing the below symptoms, you may be experiencing compassion fatigue. It is important to know that you are not alone and that compassion fatigue is normal and to be expected. While it is easy to try dismiss what you’re going through, like many do, being able to notice what you are experiencing and reaching out for professional compassion fatigue treatment (psychologist, GP) will assist you to preserve your own physical and mental health and thereby assist you to continue caring for your loved one.
Compassion Fatigue symptoms
- Exhaustion (physical and/or emotional)
- Feelings of dread or guilt
- Irritability, anxiety, or anger
- Difficulty sleeping
- Difficulty making decisions
- Feeling disconnected
- Trouble finding meaning in caregiving
Written by: Lauren Martin, Counselling Psychologist and Head of Teaching and Learning (Pretoria Campus)