Controlling the Uncontrollable

I am not, in general, a particularly controlling person. In fact, people often comment on how laid back I seem. And, that’s fairly accurate, to an extent. But about eight years ago, I started to get a lot less sleep and have a lot more demands on my attention. The cause of those two issues was our first child; the result was a newly found need for control.

Our kids are older now and a lot more independent and predictable. Most of the time I can still maintain my equanimity and be my easygoing self. But when I get stressed out, my need for control comes out, too.  And really, it doesn’t take much to unleash it. For example, I am not a great cook. I am competent (usually), but I don’t enjoy cooking and I find it stressful. My daughters like to help in the kitchen. I know how important it is for them to cook with me. It teaches them concrete skills. It helps them value food and nutrition. It brings us closer as a family. And I hate it. I can barely manage meal preparation on my own, much less with four extra little hands grabbing things and then spilling them. So I grit my teeth and do the best I can and try to explain to the kids that I’m sorry and will endeavor to be less stressed out about it next time.

So, that’s me, Ms. Easygoing who discovered a pair of iron fists buried under the blankets of the bassinet. The velvet gloves arrived when the kids entered preschool. Lucky for us, we are all healthy (knock on wood) and have no other major life stressors going on (again, knocking on wood).  When you work in hospice, you are afforded the opportunity to drop into the lives of people who are always dealing with at least one major life stressor, and sometimes more.  And most of the time, when people are having “issues,” it boils down to the same thing: the need for control.

Terminal illness and death are inherently uncontrollable.  They are beyond our control.  And that can be really, really hard to get your head around.

Lack of control comes from all directions.  First, it comes from the diagnosis.  At some point along the line before you enter into hospice someone sat you down and said that whatever is going on with you cannot be cured.  So, right there, you and you family had to accept–at least on some level–that you cannot control the disease.  And, you also had to accept–again, at least to some extent–that you will die from this disease, but you probably won’t know exactly when.  So, that’s another thing you can’t control.  And then, of course, there are the million little, and not so little, losses along the way.  You will probably not be able to do most of the things you used to love to do.  Eventually you may not even be able to take care of yourself on the most basic of levels. Some people, believe it or not, seem to greet these losses with grace and–there’s that word again–acceptance. And others…well, it’s much more of a struggle. Of course, many of those who seem to handle it with grace went through that struggle before they got to the point of acceptance, and might still go through it on occasion.

So what does that struggle for control look like? It can come in different forms.  Anger is a popular option. Anger can go hand-in-hand with micromanaging. Suddenly, nobody can do anything right for you. You complain that you have too many visitors, but when people try to leave you alone, you complain that you’ve been abandoned. There are too many pillows, but then there aren’t enough pillows. You want orange juice. It comes, but then you’d rather have water.  Bossing people around can bring at lest the illusion that you have some control over something, or someone.  Perhaps you will try to control the act of dying itself.  Since you’re apparently going to die anyway, you fail to see the point of sitting around and waiting for it to happen. Screw all these family members at your bedside trying to love on you. You want to it all to be over and done with, and every day you wake up you just get angrier and angrier that you’re not dead yet. Boy, does your family love to hear you rant about how you’d rather be dead–that makes them feel great.

That’s one possible scenario.  It took me a while to decode this next one.  Many of the homes I visit are pristine. I can’t tell you how many times I have walked into a home and exclaimed: “It’s so clean! You have so much to do…how do you keep it so clean? Seriously…how?? Please tell me.” And eventually it dawned on me: this is how the caregiver keeps some control (I think it took me so long to figure this out because the concept of cleaning when you’re stressed out was somewhat foreign to me–I usually prefer to calm down via chocolate. Lately, though, I’ve discovered that sometimes I do it, too. Though, judging by the state of our house, I must not get stressed out very often.) Nothing is out of place in these homes. All of the towels are folded just so. The patient is clean and powdered and lotioned up. Supplies are stacked neatly away. Everything looks perfect and orderly. If you can’t control your loved one’s fate, then at least you can make the bed.

My patient base is very diverse, but hovers around two extremes: incredibly wealthy (we are talking the top few percent, or close to it), usually Caucasian, often not especially religious; and impoverished Black or Hispanic families, often with strong ties to Christianity. The angry scene described two paragraphs ago seems to happen most frequently among men in the wealthy category. These men were movers and shakers, and used to having a lot of control. And, now they don’t really seem to have much at all. And that does not sit well with them. It could hardly be expected to. Those super clean homes seem to be more prevalent among my Black and Hispanic families. Of course, I see a lot of clean homes among the wealthy, but that’s usually accomplished by hired staff, which is quite different.

To delve into generalizations and blanket statements, I would venture to say that, in general, the poor families that I meet have an easier time accepting their situation than the wealthy ones. I think this could be due to a number of reasons, and I’ll mention two of them here. One is that with wealth comes power, which means that you are probably going to have an especially hard time feeling powerless. When you are poor you have probably faced many situations before in which you have felt powerless. And, while I am hardly a theologian, the second reason I’ll suggest has to do with religion. The very religious seem to happily offer up their control to a higher power. They put themselves in the hands of The Lord, and believe that He will guide them. And it really seems to ease their burden. Plus, looking forward to the afterlife doesn’t hurt either. When you don’t have that mindset, you tend to feel that it all falls on you. (I’m not trying to proselytize here; I myself do not subscribe to any particular religion).

So, how does one deal with all of this? Hospice itself was designed to offer up some control: to direct your own medical care, to control your pain to the extent that you want it controlled, to decide where you want to die. The assisted suicide movement is all about offering up some control to the terminally ill. Of course, that’s pretty extreme and not actually legal where I live. Instead, I usually suggest that, when possible, the patient should control things, even if it’s simply choosing to have lunch at 12:00 or 12:30. Another suggestion I usually make is to just acknowledge the frustration that everyone is experiencing. Knowing where that anger and obsession is coming from can go a long way in allowing you to tolerate it. And, when appropriate, I try to gently point out that while the situation is beyond their control, they can still control how they will deal with it.

Of course, that doesn’t mean that they will chose to deal with it in a way that others find to be pleasant. Dying often does not come easy. If you have experiences or suggestions that you would like to share, please tell me about them below.

In the mean time, I have a dinner to prepare in my messy home. Wish me luck.

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