Compassion Fatigue

Who cares for the caregiver when they experience burnout, or compassion fatigue?

As a survivor speaking to you, the caregiver, I want you to know these truths. You are not in control of the outcome. You cannot do this alone. You must care for yourself to avoid compassion fatigue.

Dr. Charles Figley defines compassion fatigue like this:

“Compassion Fatigue is a state experienced by those helping people or animals in distress; it is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it can create a secondary traumatic stress for the helper.”

Dr. Charles Figley

Caregivers and survivors have many similar struggles.

We often think of the survivor and their struggles first. Understandably, the injured survivor probably has a lot of new emotions and concerns, without a chance to prepare. They may not want a caregiver, may not think they need a caregiver, may resent the caregiver, may realize they need one but not want to be a burden, and may be worried about recovery and the future.

Some survivors are fighters, some not so much. Some are kind souls, some not so much. With brain injuries, some survive as a very different person with a different personality, temperament, and emotions — hard for both the caregiver and the survivor to understand and deal with.

Let’s talk about the caregivers.

Like survivors, caregivers are thrown into a new situation as a result of trauma, benefit from a peaceful environment without stress, and may need to learn new ways of doing things.

Similarly, caregivers usually don’t get to choose whether or not they will become a caregiver, to whom, when, or for how long. Some individuals seem born to be a caregiver – ever perceiving the needs of others and thriving on helping everyone everywhere; some not so much. Even the ones who seem born to do this may find the timing really, really bad!

So, when the need arises, the caregiver usually can’t take the time to get training, go on vacation first to “prepare themselves”, or tell the injured to wait a while – they will just jump in, do the best they can, and learn on the go.

Obviously, the better educated we are about the challenges we face, the better job we can do.

And with this education, there is probably less stress, and especially at the beginning when we haven’t had a chance to research and figure anything out.

Every survivor will have a different journey based on where the brain was injured, some physical, emotional, and mental issues. Physical deficits might be more straightforward for caregivers to understand. After all, if the survivor needs to relearn to walk, the caregiver can see progress and effort. But emotional and mental issues may be harder for the caregiver to understand. With brain trauma, the survivor will undoubtedly have some “invisible” deficits.

There are many common invisible struggles:

• Extreme fatigue
• Neurofatigue
• Sensory overstimulation
• Memory loss
• Anxiety
• Fear

Often, neither the survivor nor the caregiver has been prepared to deal with any of these things and they haven’t even been mentioned as possibilities by the doctors. Not knowing what to expect or watch for is worrisome to both caregiver and survivor.

Progress in the healing of a physical injury can be monitored more than the progress in the healing of an invisible injury – for the patient and for the caregiver. The caregiver may feel responsible for the survivor’s progress, or lack of progress, while often it can’t even actually be known whether there has been any progress or not. There may be good days or bad days caused by any number of things. For example, headaches can be caused by barometric pressure. And did you know diet, exercise, and proper rest can affect brain fog and mood?

Unlike other relationships, care cannot usually be reciprocated.

There is much written about how important it is for caregivers to take good care of themselves. If you are a caregiver and struggling with this sense of responsibility and fatigue, please make time to take good care of your self. You are not an effective caregiver if you’re not well or sane! To start, you may want to visit the Compassion Fatigue Awareness Project website, http://www.compassionfatigue.org/index.html. This website more thoroughly defines and explains compassion fatigue symptoms and self care suggestions.­­­

Another resource, Dr. Gabrin is an emergency physician and cancer survivor. His book, Back from Burnout, takes a different approach to care – step toward the hurting survivor and connect. There is a link to his book at the bottom of this post and it can be read for free on Kindle.

The Joe Niekro Foundation (JNF) has several Facebook support groups that have been a lifeline for us. The support group for survivors and caregivers to educate themselves and share information with others is
https://www.facebook.com/groups/aneurysmavm/

The JNF support group specific for caregivers to share their struggles or triumphs with each other is
https://www.facebook.com/groups/caregiversbrainaneurysm/

I love the Joe Niekro Foundation, please tell them BrainReigns sent you to their support groups!

Here are a few BrainReigns suggestions for caregivers.

1. Find someone you can talk to about your feelings and frustrations.
2. Be realistic about your survivor’s progress and recovery.
3. Set realistic goals for yourself.
4. Educate yourself to better understand the medical situation. (physical, emotional, and mental)
5. Find ways to share experiences other than just care. Foster the original relationship with outings, if possible.
6. Ask for help
7. Care for yourself. This is not a luxury, it is necessary!

Compassion fatigue, or caregiver burnout, just isn’t good for anybody!

Have you ever fixed lunch and forgotten to eat lunch yourself? Take time to make yourself a priority and rejuvenate your mind, body, and spirit. Caregivers and survivors both find themselves in this new care relationship without time to prepare. There can be a feeling of urgency in the new situation and it can be scary for both. But, now is not the time to overextend yourself. Find resources, call on friends, give grace to the survivor, and give grace to yourself.

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