Should Caregiving Have Its Own Diagnosis?

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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.

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About Denise Brown

I began working with family caregivers in 1990 and launched CareGiving.com in 1996 to help and support them. Through my blog, I share words of comfort and offer coping strategies and tips. I also write opinion pieces about recent research, community programs and media coverage of caregiving issues. I've written several caregiving books, including "The Caregiving Years, Six Stages to a Meaningful Journey," "Take Comfort, Reflections of Hope for Caregivers" and "After Caregiving Ends, A Guide to Beginning Again." You can purchase my books and schedule a coaching call with me in our store.

2 thoughts on “Should Caregiving Have Its Own Diagnosis?

  1. Samantha

    Caring for a family member is especially deadly because the caregiving relationship masquerades as a familial relationship. I’m not an exhausted, bored, overburdened, angry caregiver – I’m a devoted wife, who “saved her husband’s life.” I wasn’t the only sibling still living at home when my mother became terminally ill, I was a “devoted daughter.”

    I am not interested in caregiving, I have never been interested in caregiving. I have been burdened with relationships in which the other person became ill, and I had to become the devoted, selfless fill-in-the-blank. Family members who should be helping me pretend that I chose this way of life, and that I am naturally suited to it. I am not suited to it; I hate it. However, this is the fantasy that allows family members to make not the slightest effort to help. They say, “Oh, I couldn’t do what you do,” as if I chose this.

    I once heard an actress who had been under contract to M-G-M in the 1940s say that every child performer grows up and wonders, “What would I have become, had I not been forced to become an actress?”

    I sometimes wonder what I would have become had I not been burdened with sick people all of my life. What are my talents? What do I like and dislike? After a lifetime of learning a person’s preferences and needs, I wonder, what are mine? Am I really an early riser? It doesn’t feel like it. Am I really a loner? It doesn’t feel like it.

    I wonder who I am, besides a life-support system for people whose lives are, for reasons I don’t understand, more precious than my own.

    Reply
  2. Miss R

    Samantha…I understand where you are coming from, especially right now. I have said it elsewhere, but I have been expected to uproot myself from my life in another state, 1500 miles away, to care for my grandmother (whom I love, don’t get me wrong) while her SONS AND DAUGHTERS who live at MOST an HOUR AWAY are free to go about living their own lives without any care, whatsoever.

    And according to them, I am an “angel” and “have my halo,” etc.

    I have considered caregiving to be a blessing in so many ways, but I cannot believe how easy it is for others to act this way. The best part is how Gram and I are supposed to feel so thankful and blessed when the condescend to come by for AN HOUR maybe once a week or month. They tell me that there is no way they could do it and gosh, they have all these things going on in their lives.

    And I don’t? I’m in my twenties, and have a fiance waiting for me back home. I’ve spent almost this entire last year away from him. We are considering postponing the wedding because there hasn’t been any time to plan it and since I can’t have an income, there’s only HIM to pay for it. How is it that they are allowed to have a life while I am expected to watch my twenties pass me by?

    Anyway. I hear ya. It makes me feel very bitter towards other family members. I am sorry you have to feel this way, too.

    I do love the idea of there being a Caregiver Diagnosis. I didn’t want to get out of bed today and wanted to ignore my grandmother’s cries when she called for me this morning. :( (And as a result, have been guilting myself all day long for being a rotten, thankless individual.) I know that can’t be healthy and points to something serious.
    .-= Miss R´s last blog ..The Age Of Invisibility by Eissa Stein =-.

    Reply

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