Fascism and the Caregiver

For a variety of reasons I’ve been thinking about control lately. One of the things I have learned from reviewing my role as a caregiver is the development of a tendency towards seeking greater and greater control. This occurs with the best of intentions, the well-being of my patient, but the comfort found in control is seductive. There never seems to be quite enough control to be truly comfortable.

For example. After my wife’s first foot surgery, which ultimately failed, she had a number of accidents while getting about in the  alleged care of others. She suffered not one, but two concussions, because of accidents with her knee scooter. Through recovery from her second foot reconstruction, for which she had to remain non-weightbearing on her right leg for 12 straight weeks, her left knee became less and less stable with an almost complete loss of cartilage. This led to the first knee replacement. And then the second. And then more than a year to complete her recovery. (Unfortunately, she still faces more surgeries as a result of her connective tissue disease.)

The natural response of a caregiver in this situation is to reduce risk. The easiest way to do this is to exert control. This is despite the fact that control is an illusion most of the time.

First, we start to identify the problem areas of potential injury. The easiest of these is space. We change the space as best we can. We did much of this through making the house universally accessible on the main floor, adding a stairlift, and widening doors upstairs. We also moved away from the temporary ramp we had built to a significant expanse dominating the front yard meeting the letter and full spirit of ADA guidelines.

Outside the home, we changed cars. Moved from two small SUVs too a much larger one for ease of access and the hauling of wheelchairs or rollerators of various types. I became her sole escort. Paying attention to path, guiding her, removing much of her decision-making. Slowing her down to control her speed, especially on descents.

All of this was appropriate. I would do the same things over again, but I would think about it differently. I would be cognizant of the control I was exerting, that I was trying to exert.

The problem is really that control is seductive. It makes your life easier to the point of saying, “No, let me do that for you,” as a form of control to avoid mess, frustration, or discomfort for the patient and yourself. For a long-term caregiver this is incredibly seductive. Especially if chronic pain and emotional outbursts are part of the situation. After a few months, or a year, it becomes easy to do anything just for the peace and quiet. One begins to exert control in unhealthy ways in order to control your own environment – to try and find an elusive peace and quiet.

Yeah, yeah, for those paying attention, this leads to a nasty codependent relationship. Which can be quite horrid. Because what happens, if the caregiver is effective in making life easier and minimizing pain and discomfort, the patient comes to really desire this. After all, that person is miserable to begin with and so this can deteriorate surprisingly quickly – without any real awareness that this is happening. The patient ends up wanting to be controlled, consenting to it, and this is bad for both parties. Ideally, the patient should always rebel against control, never consent easily. Healing will be quicker the more the patient does for themself.

In the end, it is all about control. Humans seem to naturally seek control over the environment and over each other. Always forgetting though that control is illusion. The climate can’t be controlled, there will always be a stronger storm. Far too many things are beyond our obvious control, but we act otherwise.

A few months ago, a retired physician euthanized his wife and then shot himself. She had terminal cancer, was nearing death, and he had been her sole caregiver for almost five years. This was just up the road from us. From all accounts he had given up hope after trying to do it all himself. Probably trying to control an uncontrollable situation.

When my wife and I talked about this, my response was, “Don’t worry. I would never do this. I would still want to play golf.”

This was not as reassuring a response as I thought it might be.

But see, behind it, there was a list. A list of all the things that need to be done to by the caregiver, to maintain control. Way down at the bottom of list, almost always at the bottom, are the self-care items. This is because the time it takes  to be a caregiver can easily drive out the time needed for self-care. Especially for hard-headed, counterdependent caregivers (like me). You strive to be super-competent at everything. And there is always something else to add to the list.

And this reminds me of a fight, way back in college, before marriage. (I think this the best line ever thrown at me during a fight or argument.)

“Goddammit, all you ever want to do is paint, eat, and fuck!”

“No, I want to read, too.”

See, it’s the list thing. There is always something to add to the list.

Learning to give up the act of seeking and exerting control as a caregiver is scary but it leads to healing. As my wife’s physical condition has improved, as she has been able to reduce the meds and is no longer on morphine, the inconvenience of using a ride service has become too much to bear. She wants to drive again. She wants her independence.

I was initially resistant. She does not have a good driving history. In one 10-day period, she damaged four cars in three events. The cost of insurance was nightmarish. And I have my own control issues. But. It is time. She’s an adult, with agency, and I want her to be fully and completely independent of me. I want to give up the role of caregiver. So instead of joining the women’s march on Saturday, we spent the morning at the DMV where she regained her independence and I gave up any control over where she is, where she goes.

It’s a good thing. It’s liberating. For both of us.

The fact remains, seeking control is seductive. Especially for those who desire power or desire sameness or the comfort of a well-ordered state. It is in our best to interests to rebel against being controlled, especially when it is for own good. We do not have to consent to be helpless, to be controlled. We can, and should, fight for our health. We can help others to fight for theirs.





4 thoughts on “Fascism and the Caregiver

  1. Pingback: Data, Caregiving, and the Ethical Control | random data from a tumored head

  2. Pingback: Being Easy | random data from a tumored head

  3. Pingback: Finding my inner fascist of self-care | random data from a tumored head

  4. Pingback: From Caregiving to Caring (again) | random data from a tumored head

Be nice. It won't hurt either of us.

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