Give and Take

Or, why caretakers have toolbelts and caregivers do not.

I took on a second job in the fall of 2019. I’d been a professor of English at a small liberal arts university for 18 years when I also became a full-time caregiver for my husband, Mike, when he had to retire (very suddenly) from his own teaching position at another university.

Slightly more than a year before this, Mike had been diagnosed with Parkinson’s Disease. He was 54 at the time, and we’d been told that he would likely be able to continue working for 10 more years—maybe longer, since he was relatively young and otherwise in good health, and his job didn’t require a lot of physical activity. Retiring at 64 did not seem like a tragedy. It wasn’t what we’d planned for, but it was a manageable adjustment to our view of the future.

In retrospect, it’s clear to me why every doctor we saw gave us that prognosis: this is what most doctors tell most patients when they’re first diagnosed with PD. Never mind the fact that Mike had already been having PD symptoms for many years (in spite of the fact that I mentioned this to anyone who would listen.) Like a lot of men, Mike had simply refused to see a doctor. And when he did get a PD diagnosis, finally, it was only because I’d made it clear that I was prepared to nag him all the way to the grave. I threatened to have the words I told him something was wrong carved into his headstone.

In all fairness, Mike did appear to be in good health—apart from the Parkinson’s, of course. Before long, though, I would come to realize that this appearance was mostly due to the fact that Mike was still able to compensate for the worsening symptoms of Parkinson’s dementia; he could find ways to work around (or explain) the problems they created. When those symptoms had progressed to the point that he lost his ability to troubleshoot, that’s when everything fell apart.

He reached that point on a Tuesday afternoon just 15 months after his initial diagnosis.

Like good academics, we had done our research. We’d read that Parkinson’s dementia, while common (80% of people with PD will develop this symptom), doesn’t usually become an issue for many years. We took many years to mean many years after diagnosis. Or perhaps we took it to mean after living many years, and doctors kept emphasizing how young and healthy Mike was.

I don’t know what we thought, honestly. But I do know that we were unprepared for Parkinson’s dementia to become the central focus of our lives as quickly as it did. And I know that I was completely unprepared, at 55, to become a caregiver for the person who had been my more-than-equal partner for 30 years.

It occurred to me, just recently, that the words caregiver and caretaker describe the same job, but have completely different connotations. If you look them up, caregiver is almost always defined as a person who cares for another person—a child, or an elderly relative. A caretaker, on the other hand, is in charge of a place—a building, a garden, etc.. Even more interesting is the image each word conjures up for me. Caregiver makes me think of a woman; caretaker calls up the image of a man, usually wearing a toolbelt.

That’s because caretakers are tasked with fixing whatever goes wrong. Caregivers, on the other hand, have to make peace with the fact that some things can’t be fixed.

Mike and I are now almost six years into our post-diagnosis Parkinson’s journey. I’ve made some big changes in that small amount of time. For one thing, I’ve started alternating the word caregiver with care partner, my original job title. (It took me a while to make peace with the very Jane Eyre vibes that word gives off.) I’ve started to make that switch because Mike isn’t able to be an equal partner in his care anymore, and acknowledging this is important. If I continue to act as though he is my partner, I’ll continue to have expectations of him that simply aren’t fair. Not to either of us.

The fact that he can’t participate in his own care was illustrated for me during an appointment with his neurologist earlier this month. She proposed making an adjustment to the medication that aims to control his muscle tremors. That medication works reasonably well for short periods of time; she wanted to see if increasing the dosage would extend that “on” time. When it became clear that Mike wasn’t going to respond to her question, I patted his leg to get his attention and said “What do you think? Do you want to try adjusting your meds again?”

Mike turned and looked at me, obviously confused. He had not been following the conversation. Then he frowned and said “I don’t know. What do you think?” Which is code for Can you answer that question for me?

I turned back to the neurologist and declined the option of increasing his meds. Higher dosages come with greater risk of the side effects we’ve so far managed to avoid or manage: hallucinations, delusions, nausea, dizziness. We’ve adapted to a certain level of tremor; aiming to eliminate it altogether just doesn’t seem realistic, given our current options. Not if the overall goal is to provide Mike with a better quality of life.

The neurologist nodded and typed as I spoke. Mike nodded too, performing I agree in the same way he sometimes performs I understand—just before doing the thing I’ve cautioned him against.

Back at the start of this journey, I thought of myself as Mike’s assistant. I would make sure his symptoms were communicated clearly, as he began to struggle with language. I who would sort out and help him remember to take a complicated mix of medications several times a day, as well as refill/pick up those prescriptions. My job was to make sure our home was a quiet, stress-free place for him to live this complicated life that neither one of us could have imagined. (The stress-free part varies from day to day, but I do my level best.)

I definitely did not think of myself as Mike’s caregiver. But Parkinson’s Disease has taken away every other option—whether I use the word or not, that’s what I am.