If you are providing care to a loved one with FASD, chances are that you will experience at least one of the stages of caregiver burnout at some point.
Causes of Burnout
The requirements of caring for someone with FASD can seem to shift; caring for the person can seem like a target that is moving without any rhyme or reason. In addition, “experts” from education, healthcare, law enforcement or corrections—or from the caregiver’s own family—can insist that the person should be able to do more or perform better than the caregiver sees them doing. Facing unrealistic expectations often makes the caregiver feel unqualified, unable to trust their own instincts, and overwhelmed with confusion and self-doubt.
Lack of downtime
While parenting usually has “busy” times or a cycle that ebbs and flows, caregivers who constantly scramble to meet the demands of their loved one’s life feels like they are in a perpetual busy season, without any hope of a slower pace or “downtime” to look forward to.
If a parent or caregiver of a “neurotypical” individual makes a mistake, they will undoubtedly face some sort of consequence. However, caring for someone with a neurodevelopmental condition like FASD can be associated with consequences that can include suspension or expulsion from school, arrest and incarceration, physical illness, emotional meltdowns, unhappy siblings, and other events that are stressful. Some caregivers are faced with making decisions that could mean the difference between what is “normal” for their child, teen or adult with FASD, and a choice that could lead to some devastating consequence.
Signs of Caregiver Burnout
You don’t remember the last time you could go out to a movie, or meet friends for dinner, or just indulge in a fun activity.
Your ability to concentrate has decreased.
You feel irritable and on-edge most of the time.
You feel exhausted — even after a nap or a long night’s sleep.
You get sick more often than you used to.
You are losing interest in activities you used to enjoy.
If you are married (or live with a romantic partner), the relationship is suffering.
You find yourself unable to fall asleep or sleep soundly.
You may be smoking, drinking, or eating in greater quantities.
You snap at the person you’re caring for, even for inconsequential reasons.
You feel like there’s no point caring for the person anymore.
In some cases where the stress is intense, the caregiver even may have thoughts of getting rid of their loved one, followed by extreme guilt due to those thoughts.
If you think you are suffering from caregiver stress, seek help for yourself.
Stages of Caregiver Burnout
The honeymoon phase
The caregiver is confident, and sees caring for their loved one as a part of their duty. They take their duties positively, with the belief, “Let me look after my loved one. We can handle this.” This is similar to parenting babies or children without FASD; it’s demanding, but can be very rewarding.
The monotony phase
The caregiver feels there are ups and downs in their caregiving journey. This too is similar to the ups and downs, perhaps even the boredom, that many parents of non-disabled children feel.
Note: In parenting or caregiving for someone with FASD, this phase may be skipped, because of the intensity of the demands on your time.
The brownout phase
The caregiver feels exhausted, fatigued and disoriented. They begin to see caregiving as a chore or a burden, without any reward.
The burnout phase
The caregiver distances themselves from the person they are caring for because it can be emotionally exhausting. They continue to care for the person, but the caregiving is mostly mechanical. The caregiver may be depressed, cynical, or unable to feel anything.
Preventing Caregiver Burnout
There may be several interventions that can help you to ensure that your child or family member with FASD is well cared for, while you recoup and gear up to care for them again. These include:
Day care services, which are not limited to babies or after-school programs. Regardless of the person’s age, these resources keep the individual occupied, by exploring their skills and learning new tasks. This allows the caregiver to follow their own routine, go to work, finish household chores, and so on.
Respite care service, which offers in-home care for several hours on a regular schedule, 24-hour care for a weekend or several days, or boarding. Respite can be very expensive, and is seldom covered by health insurance. Respite services are usually available if the person qualifies for regional center services, which many children and adults with FASD in California do not.
Shared caregiving by seeking help from family and friends. This can give you a break from your caregiving tasks and help you carve out time to focus on your own care.
Enhancing your own coping skills by reaching out to a mental health expert.
Taking time out for yourself every day or every week allows you to focus on your own needs.
Comparing Stress and Burnout
Symptoms of Stress
Overly involved in the life of the person with FASD
Emotions are Overactive
Urgency and Hypervigilance
Loss of energy
Physical symptoms and issues
Symptoms of Burnout
- Emotions are blunted
- Feelings of helplessness and hopelessness
- Loss of motivation
- Long-term emotional damage