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.

An Update, of Sorts

In just over two months from now, in February, 2019, I will be nine years post brain surgery. I mention this because I have a couple hundred pages of unedited, raw memoir about the recovery experience. In those pages is beginning of a discussion about the need to lose weight.

At the time of the surgery I weighed over 300 pounds. At the time, my weight meant little to me other than as a body image issue, or a clothing issue. Shoes wore out faster, clothes had to be larger and of more limited selection. Physical activities were often more limited, although I was generally doing everything I really wanted to do, including backpacking. Comfort was issue. Most chairs are still designed for an average body weight and size of 160 pounds.

Whatever the problems, they were really only mine.

While in neuroscience ICU I realized my weight did impact others. It had significant impacts on those taking care of me. This became clear to me in the comments of one night nurse who frequently complained about her back. This bothered me so much, that in the middle of one night when I fell trying to get off the bedside commode, I refused to ask for help. Despite the weakness, the wonky head, and all the tubes connected to my arms, nose, and head, I refused to call for help. Instead I struggled, slowly and painfully, back into the bed.

All of this was on my mind two years ago today when I started with a weight-loss clinic. It has been a successful relationship and program for me as I have lost 100 pounds. I have put a few pounds back after ending the active weight-loss phase and significantly increasing my strength training in the gym. I feel stronger and healthier than at any point prior. I know for a fact there are things I can do now that I could not do 35 years ago, like pull-ups and chin-ups. My weight is about 25 pounds less than it was when I left the Army in 1985, but despite being older and probably having less muscle mass, I am stronger. Probably because I am making more effort at being strong then I did then.

And today all this matters a great deal. My wife, Melinda, is temporarily wheelchair bound. A month ago she tore muscle or connective tissue in her hip. Instead of resting and healing, as she had been advised, she got a bit carried away preparing for the holidays and collecting gifts for our newly announced grandchild. This aggravated her injury. A road-trip to southwest Missouri for Thanksgiving aggravated her pain to the point that she could not get out of the car at a motel in Evansville, Indiana on the way home. We found our way to emergency room, spent 12 hours there getting her pain somewhat under control, and a wheelchair.

We slowly made our way home. Fortunately we had taken her car, which is significantly larger than mine, to accommodate her walker. Otherwise we would not have gotten a wheelchair in and out of the car.

We’ve been home a week now. Returning to a mode of existence that we lived a few years ago during her different surgeries. Only now, instead of intentionally trying to use her leg to encourage healing, it’s the exact opposite. She cannot stand at all without a great deal of assistance. So, it’s really important and fortunate that I am strong and healthy right now. It takes a lot of strength to help her, and a lot of effort to protect my back.

My point is not to shame anyone. Losing weight is hard. Extraordinarily hard. Keeping it off is harder still. But there is a reality that our weight does have impacts. One of those impacts is the ability of others to care for us. More to the point, it affects our ability to receive care. This matters.  It may be long-term, it may only be the case if something bad happens, but it matters.

Being a caregiver is hard work.  Some things are harder than others. If nothing else,  a caregiver needs to be fit and strong. Strong enough to let the frequent cries of pain wash over them without interrupting their work. You’ve got to be strong….and so this is easier than it was four years ago.