The Act of Caregiving

I like to say that actors are the luckiest people on earth, because we get to play for a living.

I’m not saying my profession is all fun and games. Acting takes a lot of work — learning the craft, mastering technique, using your voice and body effectively, auditioning, getting rejected over and over again, and then — if you’re lucky — getting cast, rehearsing, memorizing lines, crafting a performance, and pouring your heart out for an audience night after night.

This work takes focus, energy, and a willingness to live in the moment. It’s similar to sports or music — you can prepare and practice for years (and you’d better, if you want to be any good), but when you’re in the middle of a performance, you have to turn loose and play. Nothing matters but what’s happening right now. You’re prepared, yet flexible; grounded, yet utterly spontaneous.

Actors never forget how to play. Even as adults, we hold onto our childhood ability to pretend, explore, and experiment. We embrace the full range of human emotions. We don’t judge the characters we play, we relish them — the villains as much as the heroes, the clowns as much as the tragic victims. Our job is to step into someone else’s reality and behave as if it were our own. We imagine what it’s like to live in another person’s skin, to deal with their frustrations and celebrate their joys. We learn to give ourselves over to their truth, while never completely losing sight of our own.

Does that remind you of anything? Maybe dementia caregiving?

If you’re a caregiver, I don’t have to tell you it’s not all fun and games. It’s a lot of hard work — learning about the health care system, dealing with doctor’s appointments and hospital stays, taking care of a loved one’s physical health, struggling to understand their cognitive and emotional needs, feeling rejected over and over again, and pouring your heart out day after day. That’s work.

But I’ll bet most caregivers have a story to tell about a time when caregiving was fun and creative, even playful – when they’ve been able to let go of grown-up concerns and just embrace the joy of being with another human being. As caregivers, we try hard not to judge the people in our care. It’s not always easy, but we try to love them — the villains as much as the heroes, the clowns as much as the tragic victims. We try to step into their reality and respond to it as if it were our own.

Does that remind you of anything? Yeah, I thought so.

I didn’t see the parallels between acting and caregiving at first, but I realize now that being an actor gave me a natural head start on Mom’s dementia journey. I made myself a list of rules for acting that I think apply to caregiving. I’ll elaborate on one today, and the others in future posts, but here’s the whole list if you’re curious:

• Acknowledge the Given Circumstances
• Do Your Homework
• Learn Your Lines
• Improvise
• Take Breaks
• Relentlessly Pursue Your Super-Objective

Acknowledge the Given Circumstances

The famous Russian acting teacher Konstantin Stanislavski taught his students to look, first and foremost, at the given circumstances of any play. These are the facts that the playwright has given us to work with: location, century, time of year, time of day, economic, political, and social condition of the characters, etc. An actor ignores these given circumstances at his own risk.

Take Shakespeare’s King Lear, for example. The setting is a royal court. The characters are rich and of high rank. The title character, Lear, is old and tired of governing. He has three grown daughters, two of whom are married to rival lords. The third is being courted by a duke and a king. Lear gathers them all together and announces a plan to divide his kingdom. Stakes are high, because power is on the line.

The actor playing Lear can’t suddenly decide to portray a young, virile commoner without a care in the world. He can’t pretend away the trappings of rank or the ravages of age. He must deal with the circumstances Shakespeare provides. Lear’s wealth, power, rank, age, and emotional unpredictability are essential to the story.

If I’m in a production of Lear (or any other play), I need to deal with the facts on the page. I want to deal with them; they’re going to inform every decision I make about how to move forward.

Same goes for caregiving.

Caregivers need to grapple with given circumstances – lots of them. Who am I caring for? How old is this person? What’s her diagnosis? If she’s 85 and diagnosed with mid-stage dementia, it does me no good to treat her as if she’s 70 and has no symptoms. That’s called denial. If, like my mother, she’s always loved to sew, had a rich volunteer life, played classical violin and hated Bingo, it does me no good to invite her to sporting events and Bingo games. I need to work with the person in front of me, not my idea of who that person is supposed to be.

Then there’s location. Where does my caregiving happen? Act one of my mother’s dementia drama was set in our family home. In act two, she moved to an independent senior-living apartment. Now we’re in act three, which takes place in assisted living. Do I wish she could have grown old and died at home? Absolutely. I know that’s what she wanted. But wishing won’t change the circumstances we’re in now, so I need to understand how her assisted living works and learn to navigate their system.

I also need to be realistic about my own given circumstances. Do I have a job or serious volunteer commitments? Do I still have a child at home? (When Mom moved to assisted living near me, the answer was yes, and my kid’s needs mattered just as much as hers.) Are there things about my mom that get on my nerves? (I plead the fifth!) I can’t ignore my own reality any more than I can avoid my mother’s. It’s not possible for me to suddenly become a saintly, full-time caregiver and still keep up my other obligations. How can I find a balance?

Accepting given circumstances and facing reality can be hard. You have to let go of what used to be true: My mom was so smart, such a good teacher, such a positive person! Why did she have to change? You go through a very understandable period of grief and anger. But even while you’re grieving, it helps to pay attention to given circumstances. Stanislavsky advises actors to write them down and refer to them through the whole rehearsal process. Caregivers can do that too.

When I faced up to Mom’s situation, when I stepped out of denial and acknowledged our new reality, I was able to see a way forward. I realized that her cognitive abilities may have changed, but her soul hasn’t. Armed with that knowledge, I can tackle my caregiving role with more confidence and help her live a more meaningful, less frightening life, right now.

No matter what the circumstances may become.

June on Medlock Path

Mom’s world is different now, but still beautiful.

 

14 thoughts on “The Act of Caregiving

  1. These words are SO helpful. I am going to share them with a friend who was caregiver for her husband who died a few weeks ago at age 71. He had dementia for 5 years. I met them in a writing group I facilitate at our nearby senior center and I thought Jerry was much older. Joyce, a talented writer, would bring him with her to our workshops.

  2. And Who Shall Give Care to the Caregiver?

    When my wife’s mother was passing through dementia, I wanted to help. But caregiving puts up a wall to safeguard the caregiver against other people’s well-intended attempts to take control. I felt myself walled out by my wife in that way. What to do?

    I realized that I didn’t have a prayer. So I asked Heaven for a prayer. The answer came in a flash. From that day, here’s the prayer that got me the rest of the way through:

    “She holds Mom. I hold her. You hold me.”

    Some days it was a request. Other days, it was a grateful admission. It worked both ways.

    • Bud, that is such a beautiful way to find your own place in the web of caregiving. I’m grateful to be part of a team — a few friends and an amazing family — who lift the burden from me on a regular basis. I don’t know what I would do without them.

  3. A very interesting perspective Carolyn and one that I get completely. I looked after my mother from 88 to 95. It took me a while to come down from the performance and resume my normal roles as a wife, friend, sister etc. It gave me some food for thought to on how as a childless couple need to make sure we are clear about how we wish to be cared for when we get to a similar age. Thanks Sally.

  4. Pingback: Smorgasbord Blogger Daily – Tuesday 21st August 2018- #Caregivers – Karen Ingalls, Lifelong Metamorphoses, Cynthia Reyes | Smorgasbord – Variety is the spice of life

  5. Pingback: Improvisation, or The Art of Saying Yes | Lifelong Metamorphoses

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