Caregiving with a "C"

Caregivers are starting to get more attention—in the press, in research, and in discussions about healthcare and illness. And I am both happy and relieved to see this.

Many degrees of caregiving

What I notice, though, is that we tend to talk about caregiving as a monolith—lumping it all into one giant, generic category. I hope that the next iteration of conversation will distinguish the many types and degrees of caregiving.

In the past, I have heard people discuss cancer with a capital “c,” meaning the most serious, worst-case scenario cancers. I think this concept is relevant, too, for caregiving. It is crucial, as we discuss caregiving, to identify what types of situations and challenges we are referring to in a given conversation.

Light caregiving

At one end of the spectrum is what I would describe as light caregiving: occasionally taking a family member or friend to doctor appointments or the grocery store. Maybe this simply involves functioning as a driver. An escalated level of caregiving would be accompanying the person to the appointments and maybe even participating by taking notes or asking questions. Maybe the appointments are very frequent because of a complex medical condition.

All of these activities encompass caregiving. Great levels of caregiving might be hiring professionals and arranging for care at home. Or even providing some of that daily or round-the-clock care.

Spending large chunks of time in the hospital

This is the point at which a person starts to become a caregiver with a capital “c.” When my husband was first diagnosed with bladder cancer in 2011, I accompanied him to a few appointments and spent the most intense time caregiving that year when he had surgery (a partial cystectomy) was smooth and free of complications. Still, it required a two-night hospital stay, and I was at the hospital most of that time.

But then things went back to relatively normal life and we believed the bladder cancer was under control.

But in April 2013, a series of events began that resulted, in May, in a metastatic diagnosis. Even at that point, things seemed reasonably under control. Until suddenly, they weren’t.

The situation escalated quickly

He had pain that developed and accelerated very rapidly. He was jogging in April but needed a walker by July. I had taken some time off work with the idea that we would take some short trips and enjoy some leisure time between treatments and appointments. This did not come to pass.

The situation escalated so quickly. And I rapidly was immersed in very intense caregiving challenges. Getting to a doctor’s appointment could be a half-day project because of his pain and thus, impaired mobility. Even with a disabled parking placard, the parking space often wasn't close enough to the door.

Struggling with administrative details

He was on heavy medications — narcotics to manage the pain. This was before an opioid epidemic exploded in our national consciousness. I spent a lot of time struggling with the administrative details crucial to filling the prescriptions timely so we didn’t run out but not too soon so that the pharmacy and insurance would reject them.

A long list of specialists

We had visiting nurses and physical therapists and occupational therapists. And our energy was often consumed with tweaking the pain drugs to the optimal level. New specialists kept getting added to the roster of regular appointments: palliative care, blood thinning/clot management specialist. Lab visits were constant to measure the effect of chemotherapy on things like hemoglobin and kidney function.

This is what I think of when I think of being a caregiver. This was my most intense caregiving experience. But when I drive my Mom to the grocery store these days, that is also caregiving. I think our public conversations just need to be mindful and respectful of the many degrees of caregiving. That will help us support caregivers appropriately.