Helicopter Caretaking

Posted on April 27, 2015 in Anxiety Caretakers Suicide

Backseat drivers think they are keeping the streets safe. They watch every move the driver takes, warn him of dangers that he does not seem to see. I can understand where the fear comes from. When you sit on the passenger side, the road looks different. You appear closer to the cars on the right, closer to the curb. Because you do not have control over the steering or the brakes, you fear that the driver will not see the hazards and a crash will result. I have to admit that I am not a good passenger at times and neither is my wife. I criticize her most often for being timid about making lane changes. She makes a noise between a groan and a sigh when she thinks that I am about to run into something. Do we save lives by this? Studies in Iceland and Great Britain say no, we make things worse: “The ‘Driver Distraction’ study, commissioned by esure car insurance revealed that 14 per cent of motorists have had an accident or near miss due to being distracted by a back-seat driver,” says a Daily Mail article. An article in the >LA Times enumerates some of the behaviors:

Biggest driving pet peeves: passengers who make melodramatic facial expressions or gestures; riders screaming about something the driver is already aware of; hearing complaints that they are driving too slowly.

Helicopter caretakers are the backseat drivers of the health care world. They don’t trust us. The origin of their fear is understandable: they have seen us at our worst. But with this comes a certain stigma, the belief that we are unable to take care of ourselves and recognize when our disease is getting out of hand. One case in point is the experience of a patient who spent part of the evening talking on the phone to a friend. The conversation got lively and he laughed and joked with his friend. His father kept coming into the room. “Are you all right, son?” The son soon had enough of this and rightly told his father “Dad, I am allowed to laugh.”

Caretakers think they are doing good, but I think they do more harm than good. Their calls to psychiatrists are often hysterical. I believe that over-medication is, in part, due to this kind of panic. What frightened parents strive for is flat-lining, a patient without emotion. This isn’t mental health and I think it is a leading cause of patients stopping their medications. We patients are told not to think of ourselves as the disease, but helicopter caretakers get no such warning. They thus become an impediment to recovery.

I am not so sure that their efforts lead to better patient compliance. Let me give you a related example: Two years before I received my diagnosis for bipolar disorder, I learned that I had Type 2 diabetes. My wife and I went to classes to learn all that we could about living with the illness. I was well educated on the subject when I told my mother, a retired nurse and intense helicopter parent. She then began a cycle of nagging me. She not only told me things that I already knew about the illness, but she scorned me for taking meds to control it. I heard the refrains about exercise and eating right over and over again. Sometimes she made claims that were absolutely ridiculous, like beards made diabetes worse!

Did I do a better job of managing my condition? My mother thought she was making a difference and she was, just not in the way that she thought. I gained weight, I had trouble sticking to my diet, and I didn’t exercise. Two years after going on lithium (which she opposed), I had to go through a painful and confusing med change because the diabetes had damaged my kidneys. This finally hit home on the diet issue, but I still had weight* and exercise problems. My mother kept pushing swimming — which I hated and she knew it — but I liked to hike. Something happened in the back of my mind that still mystifies me. I just didn’t exercise. My weight shot up to 290 pounds. She made fun of my pot belly and needled me about how badly I had let things go, continuing to recommend swimming even though I didn’t like it.

When she died, I experienced an attitudinal shift. I started counting my calories and exercising five times a week by hiking in the hills around me. My blood sugar numbers improved and I lost 70 pounds. If there was any reason for my success it was that I was fully in control of my health.

Not all helicopter caretaking is for the good of the patient. I did not tell my mother about my bipolar diagnosis because she didn’t want me to think that I was sick**. She found out and shamed me for using medication. I believe that she — like many helicopter parents — was mentally ill herself and just didn’t want to admit it. More than a few times, when adult patients have brought their parents, I have watched the patient calmly sit while the parent ranted and raged. A few times, I felt that the parents needed to check into the psychiatrist themselves, at least for anxiety. (I often tell caretakers to get their own therapists so they can have a place where they can talk about their worries with someone who is not the patient.) Identified patients often signal more mental illness in the family. Helicopter caretakers hide their own problems, even from themselves.

So why, I ask, do proponents of Murphy’s Law think that eroding HIPAA protections are a good thing? I have met more than a few patients who stopped taking their meds because they got sick and tired of their parents meddling in their lives. Murphy’s Law would open the records of adult patients to their “caretakers and family members”. If you want to keep your family out of your mental health problems, wouldn’t one powerful answer be to simply not create the paper trail in the first place by never seeking out the help of a psychiatrist or a therapist? If my mother had ever got into my psychiatric records, I have no doubt she would have made my life hell. The two reasons are 1.) she was in denial of her own mental illness; and, 2.) she was afraid that her emotional and physical abuse of me would come to light.

Mind you, I do believe that there are circumstances when it is appropriate to exercise such control, like when the patient is a danger to self or others, or when s/he is unable to care for herself. But there must be procedures and restrictions. Caretakers who have a history of emotional or physical abuse or who show signs of mental illness themselves should not have this privilege. In fact, courts should not grant them conservatorships or make them guardians. I believe all caretakers should undergo regular psychiatric and psychological evaluation. I believe that patients should have avenues for appeal and rescue from abusive caretakers. I believe court-appointed psychiatrists should examine the patients and their caretakers. I believe conservatorships should have a limited lifespan, say three years, after which a court can reevaluate all parties in the situation before extending them. And I believe that there shouldn’t be carte blanche given to any caretaker or family member to invade the HIPAA privacy of patients who are not in conservatorship, not even if they are paying for the care.

These points are where I diverge from the demands of the champions of Murphy’s Law. Helicopter caretakers often refuse to believe that their adult children can manage on their own. They must face that nothing gives them the right to intervene in their lives except extreme circumstances. (Another time I will talk about Laura’s Law and how I think it should be managed.) They must submit to regular care themselves and consider whether they, too, suffer from mental illness. A good caretaker encourages the patient and helps them live independently. Helicopter parents cannot let go. They overreact. They fail to promote remission. We are not our disease. It is time that caretakers realize that.

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*Studies show that nagging people about their weight leads to weight gain rather than loss. So why do we expect that helicopter caretaking is going to make people more likely to take their meds?

**My wife did know about my mental illness, but we have partnered together in a relationship based on mutual trust. She helps me — at my request — when I forget to take my meds and lets me know when I show signs of mania. I am in compliance by my own choice. I have not lost faith in my ability to recover. I know what to do and I do it.