For almost 18 months, I helped Arlinda through her final medical journey. First from a distance, then in person. It takes a lot of physical and emotional work to stay by someone's side as their health declines. The question I kept encountering after the fact was Is the patient a burden to the caregiver?

Using the word, "burden," implies a ledger in a relationship, measuring what is given against what is received and deciding the math does not balance. A relationship that lasts decades through the ups and downs and hard conversations balance over a lifetime.

I did not see spending time with Arlinda as a burden. What I saw was the energy we both put into our relationship. We created memories, laughing together, learning from each other, and putting her thoughts on paper before time ran out. It was hard and draining, but I would not deny a relationship just to forgo the most painful parts.

What Caregiving Actually Costs

Caregiving is genuinely hard, and pretending otherwise helps no one.

There is the physical cost: the logistics of medical appointments, medications, equipment, and the utter exhaustion from keeping vigilant in tending to her needs. I  was constantly on alert, even whilst sleeping or working. My nervous system did not clock out.

There is the emotional cost: creating a safe space for Arlinda's fear while processing my own. I expected the anticipatory grief and expectant loss to prepare me for the moment I found out she was gone. Hearing Lucy tell me she was gone took me to a level of grief I could never have anticipated.

People had asked me how Arlinda was doing. They rarely asked how I was doing.

And there is the opportunity cost: the work I deferred, the times I declined friends' invitations to dinner so I could be present with Arlinda.

Caregiver burnout is a documented, serious condition, and the people who experience it are not failing.

When people ask whether a patient is a burden to their caregiver, I believe they intend something else: Is it okay to feel overwhelmed? Is it okay to need help? Is it okay to admit this is hard?

The answer to all three is yes. Caregiving involves more than just noble feelings and an inexhaustible fountain of energy. Thinking that doing something extraordinarily difficult solely out of love could not be sustained for months on end.

I may have had more energy had I given myself the freedom to be tired and grateful at the same time.

I am allowed to grieve the life I put on hold while also knowing I would not choose differently. I am allowed to ask for support, accept help, fall apart in the car on the way home, and show up again the next morning.

But There Is Another Ledger

What I received from those 18 months with Arlinda could not be fully captured in her biography, try though I did.

I memorized her stories. I documented the ones she had never told anyone else. The wounds she had protected all of her life became the backbone of the book we built together. I received her laughter, and returned it three-fold. I received her wisdom, delivered in recognition of my intelligence. The stories she told to correct my actions stuck more in my mind than if she had shot "shoulds" and "oughtas" my way.

I received a model of grace under pressure that I carry with me still.

Thank goodness I had Leslie and Lucy to fall back on. I could be honest with them, as we were the only ones who shared a common experience. We held her life together so she could slip away unburdened.

That was a gift. It was we could give Arlinda. Unbeknownst to is, she was giving us a gift in return.