Caregiving and the Clock

I’ve written before about the price of impatience. In this current episode of providing basically around-the-clock care for my wife, Melinda, I’ve been taking note of my occasional impatience with her. 

About five weeks ago she fell and injured her hip, tearing a muscle. Doctor told her to rest, take it easy, give it time to heal. With the holidays coming, this did not happen. Our Thanksgiving trip to Missouri worsened things. In fact, as I described in the last post, we spent a night in an emergency room and traveled the rest of the way home with a wheelchair. So, for two weeks I have been helping her transfer to and from the wheelchair, cooking for her, keeping an eye on her meds, and taking her to all manner of doctor appointments. All this while trying to keep up with as much work as possible. It’s a lot and requires good time management.

Something that *can* happen with a person in chronic pain, physical disabilities, and a stunning array of medical problems, is that their focus can become rather narrow. Mainly it becomes about their self. It’s not particularly surprising since it can take a great deal of concentration, compartmentalization, indirect thought to deal with pain or even just small physical activities. There’s nothing particularly wrong with this, it just has the ability to put two people on different calendars and clocks.

This can be awkward. I spent enough time in the Army living with the dictum, “If you’re on time, you’re late!” that it is a part of who I am. Further, I once had an agency head who was always late to her own meetings…usually 20 or 30 minutes late. I really hate being late. I hate meetings, but I hate being late more. (Deadlines are a whole other thing…I generally see those as suggestions or desired outcomes.) Anyhow, when I take Melinda to appointments, I see it as a direct reflection on me if we are not in place prior to the appointment time. 

This disconnect can lead to great deal of frustration. The only way around it is to develop patience and improve communication. I have to work to start earlier, knowing that not only does it take her longer to be ready leave (a wheelchair slows everything down), but I have to talk through the time and scheduling with her. When she’s thinking about pain, or actually trying not to think about pain, or focusing just on completing a task so I she can leave, clocks and calendars are not what she’s thinking about. 

Yesterday we talked about this, Melinda and me. She hadn’t really thought about it. Her response was that when she’s taking care of herself, she has no difficulty being on time, it’s just that when she’s relying on me, she doesn’t think about the time at all. There’s probably something to that, but I really don’t think it is all of it. She really does make extraordinary effort to do things, things that just a few weeks ago took little effort. Pain is a real influencer as well, whether she is trying to avoid it, manage it to keep it under control. It takes real effort to do this.

A couple of years ago, I witnessed a similar disconnect between two people. I didn’t understand it at the time, and the details don’t matter, but it was as if these two people were two different species, the disconnect was that great. I finally recognized that one person was very tied to “living in the moment” and letting the moment extend until the moment changed into something else. A natural, organic progression to the end of the event. The other person was less of the moment, and more of the clock. Sensitive to schedules of both parties. Neither could understand why the other didn’t understand their perspective. 

It was so ingrained to both, neither could articulate it, let alone conceive that their positions, or internal context,  needed to be articulated.

Pain and temporary disability can be very much a matter of living in the moment. I vaguely remember this from recovering from brain surgery. Focus, effort, and just trying to do would take the concepts of clock and calendar out of my thinking. Eventually I went back to being a person of the clock, it is too much a part of who I am. Even the years I didn’t wear a watch, I pretty much always knew the time, if only because there are clocks most everywhere, especially with cellphones ever-present. (One of the few things that can drive me crazy is clocks in the same room or adjacent rooms, or really in the same building showing different times. It offends my sense of rightness.)

This current episode of physical disability has brought some new lessons. While very difficult in the first 10 days, I was definitely better prepared, as was Melinda. We’ve worked through this together more easily, mainly by communicating much better. But sometimes, the clock gets in the way, if I let it.

A commitment to the now

Kind of a year in review,  kind of a love letter to this who inspired me and continue to do so, kind of a last post on self-care (for the year at least).

I had coffee with a colleague yesterday. This, but itself, is not notable. Some kind of coffee meeting happens just about each week. What was notable was that in the process of the hour-long conversation my attention wandered only once, and then only briefly. When my attention was diverted, I was able to redirect back without effort. For most of my life, I would half-listen as a habit, my mind racing ahead in the conversation. If the subject of the conversation was a problem, I’d be working on the solution. Whatever, I was thinking, I wasn’t fully present.

ADHD is a trip, but I never tried to treat it because it never seemed a problem.  I could flitter about and still be functionally aware of what was going on around me and engage as if I had been paying close attention. In fact,  I have leveraged what I consider a personality type into an ability to change topics, levels of detail, and abstraction, almost effortlessly. I found, or created, a career based essentially on shifting priorities and a multiplicity of masters and tasks. But I’m older and it becomes more difficult. The distractions more often lead to lead to greater focus and withdrawal from the present.

The same uninterrupted flow of conversation happened last evening for about two hours.

The work of the last year in mindfulness, of being present in the moment, of just being present, is starting to pay off. It’s starting to become habit. I’ve gotten through life, despite not fully engaged all the time. That’s no longer good enough. For a whole host of reasons, it’s not good enough. I recognized that last winter. Finally.  Fortunately, I had some role models and friends to provide inspiration and guidance.

This is the thing about mindfulness – it brings you into the now. If you take a moment to meditate and count your breaths, you can’t help but be in the now. Each breath is its own moment and if you are focusing on it, there is only now.

I write this stuff in the event it might save someone a few wasted years and learn these lessons earlier than I have.

Last month I was at a day-long convening on early childhood. At the lunch break, the man sitting next to me says, “This is really random, but I think you and my wife had the same surgeon.” Conversation ensued. Yes, his wife and I did have the same neurosurgeon. She had a different type of brain tumor than I. He had found this blog when she was diagnosed in his search for questions. He told me it helpful to see evidence of surviving and thriving, especially from someone who had been through the same facility that was treating his wife. Such connections are powerful. I’ve seen it before in sharing my experience here and on a forum for acoustic neuromas (tumors similar to or related to mine).

In sharing the story of my tumor, surgery, and recovery, it is not for me about the past. It is instead about my journey now. About the choices leading to here and leading away from here, about healing and recovery. Healing and recovery are not quite the same things, I think.  A quick Google search reveals frequent debate and discussion of the meanings and their differences. Basically, healing is the process of repair. Recovery is the process of regaining what was lost – function, strength, stamina. The challenge with both is this.

The body has its own calendar and it takes however long it takes.

If one is recovering from something like major surgery or illness, the tendency is to look towards the future because the now is often unpleasant. But the work of recovery requires focusing on the now. Seven years ago, I was forced to live in the now more than I had been used to since every single thing was so much effort. Everything was harder than it had ever been, including thinking. I had to stop myself from daydreaming too much about getting better, or how things used to be. It was hard to not think about things I couldn’t do until a friend suggested that I focus on all the things I could do, and not the relatively few that I couldn’t. Such a simple suggestion redirected my focus.  It’s a bit of a shame I hadn’t realized how much living in the now would have been better way to go back then, but I was anxious to try and get back to my old life, not realizing it wasn’t optimal.

In The Last Jedi, we are given this line towards the end, “We‘re going to win not by fighting what we hate, but saving what we love.”  While I have rarely been ready to give up on life (save for a few momentary lapses into despair)  loving life was rarely a feeling of any real duration. That’s different now. Every day, I love my life. It’s not perfect by a far cry, but I do love it, and I embrace its chaos and occasional sadness. Life is good.

Life is good. Hope is still an action, and we can still have the ability to overcome the darkness.

Caregiving and the Art of Waiting

In a discussion the other night, a friend made this observation:

“So much of a caregiver’s life is waiting.”

Exactly true. She was waiting while her care was in the clinic. I have done that so very many times. Sitting in the car or waiting room, with laptop and phone, trying make the most of every minute not directly involved in transport. Sometimes though, all one can do is just sit and wait. You expect a very short wait, you don’t bring a laptop, and ten minutes turns to 20, to 40, and the next thing you know, three hours have gone by. Three hours of nonproductive time, three hours of waiting.

It’s more than that also.

Waiting as a caregiver is…

…waiting for the next thing, for the next shoe to drop.

…waiting for something to change.

…waiting for them to get better.

…waiting for a need to be expressed.

…waiting for things to get worse.

…waiting to know what to do.

…waiting for the gift of patience.

These last two items are key. Sometimes to be a caregiver is to flounder in doubt about what to do, or rather, what is the best thing to do. Advice is rampant. Advice is also confused. Advice is also often ignorant. Figuring out what to do to support your charge, and more than that, to help them heal or to be comfortable, can be very difficult. It gets worse as you try to figure out things to do that do not increase their dependence on you.

Then there is the need for patience. Patience is hard, because its need is tied to all the waiting as much as it tied just to being patient with your patient.

***

Many of us were given a copy of Dr. Seuss’ “Oh, the Places You’ll Go” as a graduation gift. About midway through it’s excitement about the possibilities in the future, the reader is warned that things may get difficult. The streets are not marked, the path is not clear. The journey may get worse and you’ll wind up headed,

“toward a most useless place. 
The Waiting Place…
…for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring,or the snow to snow
or waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.”

Even though this passage has come to my mind in many waiting rooms, it is wrong. It is not always useless to wait. Sometimes waiting is the most useful thing one can do. It can also be the most caring, loving thing a person can do. The gift of time, from one to another, is precious.

***

Waiting can be a solitary activity. Waiting can also be a community activity. It was often enough that I found myself in the company of others waiting. Once Melinda started using the county transportation service, she did the waiting. The service often required her to wait hours for a pickup and return ride home. While this gave her some independence (freedom from me) it came at a price – inconvenience. And occasionally really poor service.

***

Over the summer I had to start physical therapy for some kind of damage to my ankle (it can cause screaming during my golf swing without drastically changing my swing). When I walked into the therapy wing of the orthopedics office, the receptionist said, “Oh hi! This is the first time I’ve seen you here for yourself.” Yep. I’m kind of recognizable enough because of my size, but two-plus years of escorting Melinda to PT and sitting patiently with a laptop, I leave something of an impression.

***

I guess with the passing of Tom Petty this week, quoting the chorus to The Waiting makes sense:

The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part
-Tom Petty And The Heartbreakers, The Waiting.

Waiting can be hard. But as caregivers, it is a large part of what we do. We do it because it needs to be done. We do it because of love, commitment, friendship, whatever reason. But has hard as it is, I do not think waiting is the hardest part. The hardest part is the sense of powerlessness that occurs sometimes daily when you just can’t make things stop hurting for your patient. That’s the hardest part, followed closely by learning to accept that you can do only so much for someone, and doing too much can, in fact, be too much.

We swore we’d travel darlin’ side by side
We’d help each other stay in stride
But each lover’s steps fall so differently
But I’ll wait for you
And if I should fall behind
Wait for me
-Bruce Springsteen, “If I should Fall Behind.”

Waiting is an art. It is an artform we can all do, but we can’t always do well. It’s easy enough to just wait, but to do so without impatience, with grace, takes practice and effort. It is easy to become frustrated and grumpy. Impatience with waiting feeds into these emotions and creates undesired and unneeded conflict. To avoid this, we generally try to find ways to be productive while waiting. It can help and it can also be necessary to keep work moving. When I could afford the time, I found that waiting was often a good time to just take time to be. The stress of intense, long-term caregiving is such that caregiver can lose, or at least feel like they’ve lost, any sense that any moment of time is their own. Taking those moments in a waiting room or a carpark can be just what’s needed to find a moment for self. It took me long enough to learn that lesson, but I did learn it.

Waiting is what we do.

 

On Being Self-Conscious

I have always been hideously self-conscious. I am an introvert who usually feels awkward, body-conscious, and out-of-place, in most social situations. Despite the old adage “the clothing makes the man,” a suit tends to just make me feel more uncomfortable and out of place.  As I have been learning to be more vulnerable and open, that discomfort has begun to fade. It has also become less because I have become less through weight-loss and learning to accept my body, my choices, and the link between the two.

Why is this of note? Because this week at a professional conference that at one time I was a fixture, I chose to wear bright colors. A very bright pink blazer (technically red with a lot of white threading). I had doubts of my ability to really carry this off. I doubted whether I could feel anything but of out of place and conspicuous. The fact is, it worked though. It felt right and I heard a lot of compliments. It was also clearly me.

I often despair of the drab grayness of professional men. When tans and beige become daring fashion choices, what the hell does that mean for the ability to have any brightness or flamboyance in life? When Dogbert suggests that suits are made of wool to allow the wearer to fit in with the rest of the sheep, I totally get that. But having grown up listening to the soundtrack of Hair, particularly the song “My Conviction” the idea of bright colors appeals to me more and more. I know who I am these days, or at least I am getting there.

 

I have tried some variation of “business casual” a number of times. At this point, it is slacks and golf shirts. With my current weight-loss, I’ve taken advantage of the need for a new wardrobe to experiment a little. Likely, I can only take this so far in Richmond as Virginia government is still on the conservative side. But, two years ago, in a presentation to the members of the governor’s office, I did make the push to move away from the whole men-in-suits thing as it is a contributor to energy use. American office buildings are kept heavily air-conditioned because of men in wool suits. Think about it. It is something that can easily be changed, save for a culture that judges participants by their clothing and ability to fit in.

Anyhow, I see this episode as evidence that I am finally becoming more comfortable with myself. This is good. I feel the need to stand out these days in other ways than I have in the past. And I like color. I like splash. More importantly, I like to feel comfortable in my own skin. That’s progress.

 

From Caregiving to Caring (again)

So, this is a hard post to write. I think few people can really understand the divide that can grow between a couple when one becomes the patient and the other the primary caregiver and this becomes the relationship over a period of years. Caregiving is hard enough when you don’t really know the patient, let alone even have a personal relationship and connection to the patient. Don’t get me wrong, it is not that caring or love ends, it just gets put aside in a some ways.

I’ve written before about the lure of becoming a fascist as a caregiver. Exerting control over the environment and the patient for the patient’s good is tempting. It is all the more so when it makes life is easier for the caregiver. Plus, in the same ways that medical professionals develop a certain amount of detachment, the caregiver does as well – blocking empathy to do what’s required. As things go further, if your patient is in chronic pain, you actually start losing empathy altogether because it gets to too much. Complaints of pain that you can’t actually fix become wearing. Pain becomes an evil, demanding god.

What happens when a couple actually makes it through to the other side of this experience? This is what we are finding out.

First, while Melinda has made tremendous improvement and is now living a much more independent life, it is not strictly pain-free. Nor are we (she) done with the surgeries. For now though, she is off the pain meds. She is driving. She is getting out and about. She is awake. This is different. But we are not the same couple as when we meant.

Since 2010 we have lived with my 32-hours brain surgery and multiple-year recovery until I actually felt well and then a series of health issues with Melinda, that now seem to have been the early warning signs of full disability. Dislocated ribs occurred in fall of 2010. Nearly uncountable sick days and worsening arthritis leading to a pain management contract. Then there were the surgeries. The il-advised foot surgery that failed and was repeated. The months of not being able to put weight on her right foot that led to the destruction of her left knee. The breaks in mental well-being that made the pain and misery worse. The knee replacements and other surgeries.  It all got so old.

Pain became her god. She had so much of it. I juggled my time between caregiving and work, filling any spaces between with hobbies or the Internet to keep from going crazy. (Well, at least so I thought. I guess it depends on the definition of crazy. I certainly got sad.) I learned to simply ask what was wrong when she complained of pain. Trying not to judge, just listening, but also not trying to share it.  I needed to be able to keep doing. I couldn’t shut down.

Throughout all this, we tried to give a home to our former daughter-in-law and two grandsons. A couple of times. Well, actually three. Stability is desirable, but not always obtainable for some people it seems. Or at least certain kinds of stability are less desirable than others.

And so we grew apart.

As I have engaged in self-care I have simplified my life. Learning mindfulness. Learning to improve my focus. Removing distraction. Making more space for life to happen and for me to engage it. And what do you know? This made more time for Melinda.

In recent weeks, we’ve begun to reconnect. We have made time for each other. Really, I have made time for her. Since everything is no longer about having to take care of her, I’ve been able to learn to care about her again, more fully. To remember that we have thirty-one years of history together and that there is a reason for that, beyond stubbornness and our son. It’s also gotten easier to care since I have begun to really learn how to live without anger as a lifestyle.  It really does amaze me at how much that has changed my life for the better, despite the fact that I am not yet very good at it. Seriously though, not being responding to almost everything with some kind of anger, is a huge improvement in well-being.

Putting away the habit of anger and making time do another important thing. They open space for communicating beyond “How’s your pain today? What appointments do/did you have?” My problem is that I pretty much detest small talk. I am not good at it. I am also really only interested in the conveyance of useful information. But of course, I have had blinders on. Small talk does convey useful information if you let it. Perhaps more importantly, it eases the way into big talk and makes difficult talk a little less difficult.

So, throughout all this, it has become a rediscovery of caring without caregiving for the woman I married in 1989. It’s challenging and exciting and comforting, all at the same time.

Here’s the thing. We are in our fifties. She has a connective tissue disorder that will never go away and will only worsen over time. I have a brain tumor and lifetime of MRIs ahead. In all likelihood this is only a respite. But it is a necessary one to recharge the caring battery. It is also a good time for it happen. Our road trip to Philadelphia and Joplin was a rediscovery of who we used to be and so we are in the early stages of planning a new road trip, that’s completely awesome.

Road trips, the Great American Road Trip, are challenging ways to spend time together. They can fail dramatically or be succeed wildly. I’m happy when they fall somewhere between and the travelers arrive home happy, tired, and interconnected. I think though we are already on an adventure, one that began in 1986, and our summer road trip will be just another highlight.

 

 

 

 

Data, Caregiving, and the Ethical Control

This was in response to the tweet pushing Fascism and the Caregiver.

It makes sense, doesn’t it? Those of us with the responsibility of managing large quantities of the personal data of other people constantly think about control. We have legal and ethical requirements to control access, to establish and maintain limits, and use best practices (such least privilege access).  Whether we are talking about the Federal Education Rights and Privacy Act (FERPA),  Health Insurance Portability and Accountability Act (HIPAA), or any of the dozens of other federal and state privacy laws.

We also have the responsibility to encourage use of the data, but always appropriate use. Use that adds value to the lives/livelihoods of those we serve. Above all, use that does no harm, intentional or otherwise, to those whose data it is.

Last week, there was an essay at InsideHigherEd with the statement that “Big Data are ethically neutral.”

Data are never ethically neutral.  How can they be? Data create a definitional representation of the world and actions of individuals. The simple act of definition is fraught with ethical dilemma. I’ve written before about our decision not to collect student sex beyond men, women, unknown/unreported. There needs to be legitimate reason to go beyond this level of detail that outweighs the risk of collecting information about individuals that can be put to nefarious use.

As I write this  on the weekend of a badly written, ill-advised executive order, I know that a number of my colleagues around the state and nation are rethinking data collection elements, especially those about religion or nation of origin. There is an ethical choice about what to collect. For what reason would it be necessary to collect religious preference? I fully understand why the military does so as there are at least three reasons: 1) providing adequate numbers of chaplains with knowledge and training across faiths and denominations; 2) knowing the last rites needed by each service member; 3) knowing what symbols to use on a tombstone. These seem clear-cut to me. However, I can rarely understand why any other government agency or private business would need to collect this. More and more, I understand even less why someone would provide it. The fact is, today’s majority group is no more than tomorrow’s minority group.

There are also ethical choices at work in creating data definitions, specifically in the coding of categorical data or the scale of numeric data. Any choice of categories, any choice of words to describe the category,  have the power to determine how people think about the data, from collection through reporting. A simple example is the tired phrase “first-time freshman” which we (at work) have replaced with “First-Time in College” and “Freshman” with “First-year.” It’s long past time to move away from gendered terms. After all, our flagship university has been enrolling women since 1972.  (When pundits start talking about “colleges and universities being resistant to change” I start pointing out all the ways they have changed in just the last 50-odd years. It’s quite amazing.)

I have control issues, so let’s get back to talking about control.

I’m suspicious of anyone that tells me they are controlling me or my behavior for my own good. It is is usually for their good. On the other hand, one of the maxims I always taught my sons was , “Rules are your friends. If you’re going to break them, make sure you know what rules you are breaking, and why.” Anyhow, there are rules that make sense. Rules for public safety and responsible living within the social compact. Control, in and of itself, is not a bad thing. Controlling access to data as a privacy protection is not only reasonable and proper, it is an ethical and legal obligation.

But if data are locked away, without use, they should never been collected in the first place. There should be use. If data are collected to serve a purpose, let them serve that purpose. If they can be used to serve a greater purpose, that should be allowed as well…with proper controls. The hacker creed is that “Data want to be free.” Perhaps, but they at least want to be more free.

In other words, it is about balance. This is the mistake I made as my wife’s caregiver – I tried to exert too much control, for her own good, of course. And mine, it was just easier that way.

“Easier that way” should probably never be the justification for anything.

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.