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.