A new member of one of our online support groups recently wrote me with an interesting thought. “I think caregiving deserves its own diagnosis,” she said.
Hmm… So, I asked Donna, who has a M.S. in counseling and cares for her mother, to expand on her idea. My questions and her answers follow.
Caregiving: Do you remember inspiration for the idea of caregiving as a mental health diagnosis?
Donna: I don’t have a specific inspiration for the idea of a diagnosis for caregivers other than my own reaction to too much caregiving and too much grief. My idea of a caregiver diagnosis also comes from my graduate school project which covered the pervasiveness of sexism in our culture and from my work with neglected women. The stress that comes from caregiving causes many physical and mental difficulties; if PMS can be a diagnosis, why not “Caregiver Syndrome”?
The disciplines of neuropsychology and neurophysiology are part of the mind-body healing arts. It requires a Ph.D. to practice and Ph.D. doctors who are practicing usually perform testing services for social security, insurance companies, and the like. Researchers in that field study the physical and societal effects of stress-based symptomology, so it’s already a legitimate science currently in practice. I think they should step up to the plate to highlight the physical and mental fall out from the stress of caregiving. We have a glut of baby boomers on deck to receive caregiving services. If nothing is done to deal with the issue who will be around to care for the millions of soon-to-be elderly and sick? What will we do with them?
Our culture will have to make the jump to hyper-speed with regards to the complex understanding that we are all in this life together. America, and my family reaches back three hundred years, is still stuck in our frontier mentality that requires everyone to either pull a full load of weight, regardless of ability, or be left behind with no support. We are no longer a frontier community, we are now a cosmopolitan community, much like Europe, but we do not want to think like Europeans; we like our standards the way they are. Because our culture demands that doctors or lawyers are consulted for approval before we grant special status to anyone, a diagnosis for caregivers would fulfill that social requirement and lead to fixes we can’t yet imagine.
Caregiving: How would having their own a diagnosis help family caregivers? Is there a downside?
Donna: The societal structures would change. Medical and psych facilities would be forced to look at the minutia of the issue to decide the diagnosis. Looking at the minutiae would bring the issue into the public conversation.
If the symptomology were correctly recognized, it would be obvious that a caregiver cannot work at a job and caregive full-time, too. Even if a caregiver is not also working, a full understanding would bring to light just how disabling the process of caring for a sick or elderly family member becomes over time.
Statistically, caregivers die sooner than the receiver at a higher rate than in the general population. If the syndrome were accurately recognized, people could get state disability which would give them a year of paid time off, no guarantee of a job after a year, but that is quite a long time of paid leave to be used as the caregiver sees fit.
If caregiving syndrome were a recognized disorder then caregivers could get family medical leave for themselves, possibly state disability, possibly social security disability.* If we are going to require that people sacrifice themselves for a sick or elderly family member, we cannot simply leave them to suffer alone and unsupported. My idea of a caregiver diagnosis would not solve the entire problem, but it might offer some social structures that will help over time. The only true fix is for our culture to take our collective head out of our collective rear end and recognize that human frailty on the part of the caregiver is not a moral failing. Recognizing the disabling stress-symptoms caused by caregiving might result in the building of care centers that are homelike, well-run, clean, serviced by educated professionals and not minimum wage workers, and held to very high standards. A healthy society should not neglect families to the point that they must turn their entire lives over to the process of caring for the ill and the elderly, unless they want to.
There are sound reasons behind the adage, “A lawyer who defends himself has a fool for a client.” And, in medicine, a surgeon is not allowed to perform surgery on their family members. I think the reasons behind those concepts are obvious. Following this same logic, it is unreasonable to expect any person to gulp down their grief, fear, anger, past abuses, etc, and sacrifice their own well-being to the needs of a family member over long periods of time. It simply isn’t good for either party. The only thing standing in the way of a better outcome for care givers is will. I don’t see a down-side.
Caregiving: What symptoms would be present in order for a diagnosis to be given?
Donna: I think that a diagnosis tree could be determined based on presenting symptoms of malaise, depression or depressed affect, immune dysfunction, hair loss, high-blood pressure that was not present before caregiving began, weight gain that cannot be linked to other life style changes, chronic headache, chronic insomnia, chronic nausea, anger, rage, feelings of wanting to hurt one’s self or the care receiver, suicidal ideation, asignificant shift in personality. If a caregiver experienced at least five of the aforementioned health issues and is currently taking care of a sick or elderly family member, then that person could be reasonably said to be suffering from caregiver syndrome and could be at high risk for early death.
Caregiving: Based on these symptoms, would you be diagnosed? Why or why not?
Donna: Based on the above, I would have been diagnosed over a year ago.
What do you think? Do you agree?
*An individual can use the Family Medical Leave Act to care for an immediate family member (spouse, child, or parent) with a serious health condition. In addition, the U.S. Equal Employment Opportunity Commission has issued best practices for employers with caregiving employees and enforcement guidelines against unfair treatment of workers with caregiving responsibilities.