November is National Family Caregivers Month. Even more than the accolades and recognition extended by communities during November, most caregivers want national attention to the mental health issues that often accompany years of caring for a person with a severe brain injury or other catastrophic illness. Post-traumatic stress is one of the main problems.
A brief introduction to post-traumatic stress
Imagine a father who thinks he is going crazy because he gets a splitting headache before entering the ICU room where his son lies comatose. He can almost hear the sound his son’s girlfriend described when their car hit a guardrail on the way home from a party. When the father tries to sleep, he sees vivid images of the EMTs lifting his son from the wreckage with the Jaws of Life. Or consider the wife of a wounded service member who has both a traumatic brain injury (TBI) and PTSD. The wife calls her friend at midnight and whispers, “I can’t take one more night of walking on eggshells and keeping the kids quiet so we won’t set off his flashbacks and yelling.”
Both of these family caregivers are experiencing a post-traumatic response to a dangerous situation. If several symptoms go on for over a month, the person might be diagnosed with Post Traumatic Stress Disorder (PTSD). However, the symptoms and experience can be disruptive to health and relationships even if the caregiver does not meet all of the official DSM IV criteria for PTSD.
There are two main types of stress responses— primary and secondary. A person who is directly exposed to a dangerous event (accident, rape, war) might develop a primary traumatic stress response. In contrast, a caregiver who listens to an injured spouse’s repeated story of the accident, or is on the receiving end of angry outbursts might develop a secondary traumatic stress response.
Courageous caregivers of wounded military members are leading the charge to raise awareness and demand treatment for post-traumatic stress. On a recent CBS News broadcast, "Caregivers of US Veterans Bear Scars of War", military wives described how their nightmares and fears mirrored those of their wounded husbands who have been diagnosed with PTSD. The women detailed the overwhelming responsibilities and experiences that led to depression and traumatic stress. Their proactive stance extends to a non-profit organization, Family of a Vet.
Who is at risk for post-traumatic stress?
Certain experiences can raise the risk of developing a post-traumatic response for a family caregiver. Here are a few of the main risks:
• Personal history of trauma or psychiatric illness;
• Caring for a person who has a very changed personality. Especially if he/she has unpredictable behavior, or is physically or emotionally abusive;
• Need to perform complex treatments beyond ability or training.
• Injured person cannot or will not participate in treatment, or take responsibility for actions.
A recent survey of family caregivers by AARP and United Hospital Fund, (“Home Alone: Family Caregivers Providing Complex Chronic Care”,) found that 78% of respondents managed medication, including injections and intravenous medications, 43% performed nursing tasks for those with multiple chronic physical and cognitive issues, and more than half said they felt depressed or hopeless in the last two weeks. Many caregivers are now expected to provide the kind of complex care for which nurses receive specialized training. In my opinion, Post-traumatic stress could be one of the contributors to fair or poor health that one-third of the caregivers reported.
What are the signals?
The symptoms are divided into categories of re-experiencing, avoidance, and hyperarousal.
1. Re-experiencing symptoms:
• Flashbacks to the triggering event.
• Nightmares, bad dreams
• Frightening thoughts about what might happen, what you might do
2. Avoidance symptoms:
• Feeling frozen or numb inside
• Avoiding places, events, or objects that remind you of the experience
• Feeling guilty, depressed, or worried all the time
• Memory problems
• Losing interest in activities you enjoyed before
3. Hyperarousal symptoms:
• As a support group facilitator, the primary symptom I hear from caregivers is hyperarousal that leads to hypervigilance. This comes from being in a prolonged state of chronic stress, coupled with the responsibility to monitor the persons safety or critical needs. When I speak at educational forums, caregivers tell me that they still feel “on alert” months or even years after the sick person dies. Hyperarousal can lead to serious medical problems, as well as depression and anxiety.
• Easily startled by noises
• Feeling tense, sore, irritable, or having angry outbursts
• Having trouble sleeping.
Five tips to manage post-traumatic stress
1. Recognize the signals and get help early. Don’t keep dangerous secrets. Share your concerns with counselor, support group, or trusted friend. Tell a professional if you are not feeling safe. Trauma can also lead to growth and new coping skills.
3. Set healthy boundaries. Don’t do anything for the sick person that he/she can/should do for self. Avoid taking on his/her memories, dreams, behaviors, or pain.
4. Give yourself permission to prioritize self-care. Do something you enjoy every day. Have a stabilizing routine that you control and do most days. For instance, call a friend, write in a journal, take a walk, or get absorbed in a book or hobby. If you think you “have no time” for self-care, remember that recovering from a stress-related illness takes much more time!
5. Be realistic about how much care you can provide. Which treatments are you willing to do, who else could be involved? Be direct and pro-active when talking to healthcare professionals about expectations, resources, and the reality that, while committed and caring, you are also only human. Taking the time to answer Carol Levine’s questions will help you make decisions.
Next week I’ll write about the connection between post-traumatic stress and compassion fatigue.
Janet Cromer, RN, MA, LMHC is the author of Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury. Janet speaks nationally on many aspects of stress resilience for family caregivers and healthcare professionals.