Connecting the Dots

I changed jobs almost a year ago; after 19 years of working as an occupational therapist in a large school district, I moved over to the world of academia, joining the faculty at a university in the heart of the city in which I live.

I continue to provide OT services for patients, but now part of my job also includes helping to shape the education – and the perspectives – of future occupational therapists.  I weave into what I teach many of the things I learned as a result of what my dad, my family, and I experienced after his diagnosis of brain cancer.  I feel compelled to impress certain things on the group of fledgling healthcare professionals before they enter the clinical arena, in hope of maximizing the positive impact they will have on their future patients and the families of their patients.  In the medical world, these tips are sometimes referred to as “clinical pearls.” 

I think there are a lot of lessons for the OT students to carry forward into their interactions with patients from things I saw (or didn’t see) when I was with my dad while he was in rehab.  On one such occasion, the occupational therapist came to my dad’s room and escorted us to the rehab gym, where she set him up at a big table.  She brought over a bowl of many small items which she dumped onto the surface in front of him, and she instructed him to use his left hand to sort the items into piles according to their similarities.  Before Dad could get started, she turned around and walked over to another patient on the other side of the gym, presumably to check in on that patient while Dad got going on the assignment he had gotten from her.

It was odd for me to be there in that setting as a caregiver instead of a service provider; I tried to make a conscious effort to let the therapist take the lead and not to prompt my dad too much during the intervention.  I watched him as he sat in the wheelchair that the OT had positioned at the table.  He looked at the stuff on the table for a minute, glanced around the room for a couple of minutes, and then looked at me.  “I guess she wants me to clean out her junk drawer,” he said to me in a stage whisper.  “If it was up to me, I would just throw all that crap away, but I guess if I do help her she will do something to help me get better so I can go home.”

Of course, I knew that what she wanted him to do was for his benefit, not to help her organize her junk drawer, but what I also knew was that Dad hated junk and that he hated to do things that he saw as a waste of time.  The OT had not explained to him why he was supported to perform the task.  I tried to explain it to him, but he was way past the point of listening at that point; he just wanted to get done with what he saw as the worthless job she had given him so he could get the hell out of there.

After about five minutes, the OT turned around and saw that Dad hadn’t started on the activity.  She came back over to us, and I waited to see what would be communicated between the two of them.  “Bill,” she said, annoying me with her assumed familiarity, “What did I tell you to do?”  And then I was annoyed with her tone and her attitude.  Dad, in maybe the first time in my life that I’d ever seen him do such a thing, offered an excuse to get out of doing the work: “I have to go to the bathroom, and I have a headache,” he told her. 

She seemed all-too-eager to take the bait.  “Oh, no problem,” she told him.  “We can go back to your room so you can use the restroom in there and then you can take a break.”

“Take a break from what – sitting on the sidelines with a task he sees as a complete waste of time while you chat it up with another patient??” I wanted to yell at her.  I knew what Dad was doing, but I also knew from past experience since he’d been sick that if I started raising a stink it would either embarrass him or scare him or both. 

I tell this story to the OT students now because I want them to see the big picture in the interventions they provide for their patients.  “Always connect the dots for the patient and for their caregivers,” I tell them.  “Don’t leave them to wonder why you are asking them to do something.  Talk to them about what their priorities are; explain the purpose of the activity and clearly identify what the patient will gain by putting forth effort in the session. Find out what their carrot is - what motivates and interests them - and incorporate that into your treatment plan.” 

There are several more clinical pearls that can be taken from this story, too, lessons that I think are important for healthcare professionals to know.  Through telling stories about people with injuries or illness like my dad, I hope to cultivate the compassion these students have so that they are able to connect the dots to effectively serve the needs of their patients for many years to come.

Waiting for Disaster

So much has been written about the stages of grief over the years.  It’s interesting to me, and I have found some comfort reading about generic Grief because the information sometimes serves at times to let me know what may be coming down the pike emotionally for me and at other times to reassure me that what I am feeling/thinking/doing is Normal (whatever Normal is). 

One of the many things that I did not know about before we were in the thick of things ourselves after my dad’s illness was Anticipatory Grief.  Somewhat ironically, I actually learned about it after we’d been launched into full-blown Grief after my dad’s death, but even in that context I was able to recognize the accuracy of what I was reading about it in terms of what my family went through while my dad was sick.

Something related to Grief that I haven’t heard anything about, though, is the watchdog mentality of a person who is caring for someone with a catastrophic illness, an emotional state that can even extend into the time period after the death of their loved one.  It’s an odd habit that can easily find footing, morphing into almost an addiction of sorts, the waiting for something bad to happen, the unwelcome sense of dread and fear, the impending sense of doom. That Waiting for Disaster kind of thinking makes sense when a person is caring for someone who is critically ill; what doesn’t add up, though, is when that feeling lasts even when the sick person isn’t around to need help anymore.

I don't think there's a term for that extended expectation of catastrophe; perhaps Foredoom is a good way to label it. From talking to so many people who have gone through similar situations like my family did after my dad's diagnosis, I can tell you that it's real - and that it's not that uncommon.

At times, when that Foredoom takes hold, it can feel almost shocking when things go well, and what’s even stranger than that is the way it feels disconcerting, maybe even reckless, to try to drop the Worst-Case Scenario kind of thinking, the sleeping with one eye open, the constant monitoring of the cell phone just in case someone needs me for something critical.  The thing about it that hooks us, I think, while we are caregivers in a critical situation, is the feeling of being needed, perhaps even in a life-or-death type of way, and of feeling like we have some control over things that without us, we imagine, would go spinning out of control. 

When that caregiver role is gone for us, it’s a loss that adds to the chaos, the directionlessness, and the grief of the loss of our loved one.  The sting of the realization that we did our best and still weren’t able to FIX things weighs so heavily on us and makes us wonder “What next?”  It makes us question whom we are, what we are supposed to be doing, and how we are going to cope with the changes that have been forced upon us.

Sometimes, I’m learning, that sense of vigilance remains, long after it makes sense.  Maybe we've become so accustomed to the noise that we don't know how to cope with the quiet. Maybe it’s our psyche’s way of punishing ourselves for not being able to save the person we loved - or for living still when he isn’t.  Maybe it’s a result of clinging on to the idea that we have any control over anything in life, even long after we should have realized how crazy and misdirected that thought is.  It’s like being “on call” was the thing that gave us direction and meaning, and, now that that’s gone, those of us still here are left adrift, unable to relax or unwind but so, so exhausted and confused and disoriented.