The young woman looked at me with concern in her eyes. “So how are you handling this? Do you feel you are coping okay? Is there anything we can provide you?”

No, this was not a social worker at the oncology clinic I frequent. I was not being asked these questions as a patient at all. I was being asked these questions as a caregiver for my elderly aunt.

I have been my Aunt Ginger’s caregiver, first informally, then formally, for the last three years. In recent weeks, the caregiving duties have in­creased tenfold, thanks to a recent injury and the always present, con­stant­ly advancing dementia. We have finally hit a plateau, a good plateau, but with Aunt Ginger’s age (85) and memory loss, I know the way ahead is only down.

In recent weeks, there have been rounds of doctor visits, rounds of antibiotics, rounds of my stopping by daily to inspect and then bandage a leg gash that Aunt Ginger could not remember happening. I had to take control of the antibiotics, so she didn’t take too many in one day. I also had to take control of the bandages, tape, and topical ointment for her leg, so she didn’t redistribute the items throughout her apartment, an activity that caused me several merry mornings of "where did she put it today?"

Aunt Ginger lives a block away, and for two weeks I was carrying all the items, including the antibiotics, in a little blue bag. Our public schools went back into session at about the same time, and as I trotted back and forth between Ginger's apartment and our house, I felt like a school­girl swinging her lunch bag.

Except when I hit the caregiver wall and fell apart. I’ve had a few melt­downs – not in anger, but in ex­haus­tion – at home, in private. The meltdowns, not surprisingly, are often on the heels of a night of poor sleep and an overbooked day topped with feeling lousy physically.

At about the time I fell apart for the second or third time, I finished reading Passages in Caregiving by Gail Sheehy. I cannot say enough about this book, other than I ended up buying my own copy. Reading Sheehy, I smacked my forehead at the obvious errors in my caregiver thinking.

I am the caregiver for Ginger, but I am also the caregiver for myself. Sheehy stresses over and over that the caregiver needs to take care of his or herself as part of the overall continuum of caregiving, which she com­pares to a labyrinth. Not a puzzle, not a maze, but a path that is not always visible or predictable.

Taking a deep breath and a few steps back from the brink, I saw that I let the events and stresses of the last several weeks invade my personal realm. No wonder I collapsed. Protecting personal time and space, in­clud­ing time and space with my husband Warren, is not only important but critical to my being able to take care of health issues, jobs, Aunt Ginger, and the rest of daily life.

Being the person giving the care, instead of the person receiving the care, has been an enlightening ex­per­i­ence for me. I have to accept that I can’t do it all. And I certainly can’t do any of it perfectly. Sometimes, the best I can do is balance just a few things. That’s why Aunt Ginger and I met with the social worker from the Council for Older Adults to talk about starting some in-home services.

Being the caregiver has also made me realize that, as my needs increase, I may have to adjust my attitude towards accepting care. Aunt Ginger sits on the couch and fumes sometimes. “I don’t like this one bit,” she’ll say. “I’m not talking about you. I’m talking about not being able to do everything for myself like I used to be able to do.”

Listening to her, I know that the myeloma will likely put me in that position in the future. At some point, I will have to submit to a loss of some independence. At some point, I will have to ask for more help than I am accustomed to or want. At some point, I will have to accept that I can’t do it all for myself. At some point, the best I will be able to do is balance just a few things.

With one exception, that being Tabitha Tow Burns ^[1], all of us who write columns for The Myeloma Beacon write from the patient’s perspective. That’s what we are, after all. We filter everything through our viewpoint. And sometimes that patient viewpoint isn’t pretty.

I do as much now as I can without help or intervention. Warren is very patient with my refusals for as­sis­tance, reminding me that he is just trying to make things easier on me. I sometimes say things in reply that make him wince. My patient filter is not a fine one, and my frustration shows in my responses.

My caregiver role is teaching me that time can move at the speed of a slow tortoise. My caregiver role is showing me how to accept that, sometimes, that’s just the way it is, be it an in­ter­mi­nable medical appoint­ment or the twen­tieth discussion of a long dead classmate I never knew. My caregiver role is teaching me patience.

I just hope I learn enough now to carry it into the future when I am on the receiving end of the care­giving.