Respect and Autonomy in Caregiver Role

It’s a Monday morning in New England. The sun is playing a game of hiding and seek. Well, it’s just hiding. I don’t think it wants us to find it today. I have days like that. They are useful for reflection and writing.

Over the last few days, my mother has been on my mind. She passed away 17 years ago. On Halloween this year, she would have been 100 years old. That’s a significant number. I miss her. I took care of her for many years. How that evolved is hard to say, but what I can say is that we had a symbiotic relationship. This thought brings me to my writing today. 

As I write, I glance out the window at the pasture. I see cows walking purposely to the fence bordering my backyard. I wonder if they think I have something important to say or that they have something important to add.

Regarding caregiving, I have been watching commercials on television and the internet very closely. While I understand marketing and the company’s need to sell their services for caring for someone who is ill or aging, I am increasingly dismayed at the not so subliminal message that when we are sick or aging, we have to be “taken care of.” There is no message of autonomy or respect. It is as though when we enter this space in our life, we are less as human beings.

Just because we are ill or aging does not mean we do not deserve respect and don’t appreciate autonomy.

My mother was an independent woman. Raised in Boston as part of a conservative family, I suppose that is how she came by the need for independence. Or perhaps, it was just a part of her genetic code.  I know I am like her with the need to be independent. Don’t we all have at least some need to be independent?

This part of my mother’s character is what I strived to preserve and respect as my caregiver role grew. I wanted her to be or at least feel respected and as autonomous as possible, for as long as possible. Even as she became confined to her bed, as long as she was able to communicate, I included her in all decisions. I felt then as I believe now, that one’s health and the ability to navigate changes in one’s health status rely very much on our ability to take part in our care. 

Autonomy – the ability to self-govern; freedom from control

Respect – a feeling of admiration attained from acknowledging ability, character, or achievement

Autonomy and respect go hand in hand in caregiving.

To empower a caree with autonomy comes from a place of respect for that person.

I respected my mother, and through my caring of her, I wanted to show that respect by including her in decision making. I tried to think of how I would want to be taken care of should the role be reversed.

My attitude allowed for full support of my mom. Of course, there were times when I was exhausted and frustrated, but even in weak moments of misgivings, I energized in knowing that I was respecting her needs and in the final analysis, that was good for us both then and now that she has passed.

As I ramble my way through my morning thoughts, I realize that this act of acknowledging respect and autonomy was a selfish act. Now that she has moved into another space, I can sit here and know I did the best I could with what I knew at the time and made her transition and all of the days before, as easy and comfortable as possible.

I don’t know how to manage the complexities of marketing. What I do know is that our roles as caregivers should be wrapped with compassion and empathy, while tempered with respect and the acknowledged need for autonomy. As we age, navigate a life-altering condition or illness, respect and autonomy are often all we feel we have left.

Back to those cows mentioned above.

They meandered along each side of their fenced-in pasture and back up the hill to where they spend their rainy days. As I considered this, the Cole Porter song “Don’t Fence Me In” came to mind. An appropriate song to reflect on the thought that when in the role of caregiver, it’s good to recall, none of us want to feel fenced-in. Creating space for autonomy and respect can lessen that feeling.

Don’t Fence Me In – Cole Porter