Caregiver Support: Who is Most Important? The Caregiver or the Person Being Cared for?
For many, this may be a strange question to ask, who is more important in the caregiving drama? Usually, the person cared for thinks they're most important in a caring-for/caregiving relationship. Most caregivers would say the same. But I'll take the contrarian view and say the caregiver and the person being cared for are equally important.
But I didn't believe that at first. I thought my role was to serve my wife, put my life on hold, compromise my needs, suffer through this tragedy with patience.
This situation that you find yourself in that's been created for you is a function of your karma and psychological and emotional experiences. The situation is created. You enter into the situation. And the situation returns the favor. It recreates you. Dean Dayalu
So, I held my wife at arm's length and treated her as a patient. I didn't embrace caregiving, which meant I didn't commit to the role. I waited for caregiving to end, thinking I would "resume" my life. (How could I resume my life when the probable outcome was that she would die from Alzheimer's and I would be widowed? What was I resuming?)
I played the supporting actor; my wife had the starring role. I was pretty good with all the doing. I left nothing undone.
But something was missing. I lost my connection to my wife.
Now we had a husband/patient relationship. I knew it, and so did my wife. So we had another reason to be unhappy. Regardless, I showed up with a happy face—a happy veneer and continued doing what needed to get done. What I did seemed more important than how I went about doing it.
We are so obsessed with doing that we have no time and no imagination left for being. As a result, men are valued not for what they are but for what they do or what they have - for their usefulness. Thomas Merton
What was missing was that I had forgotten to put myself into a co-starring role. I assumed that my part was in the supporting cast. I was hired to do things and then get off the stage. As a supporting player, my life wasn't as important as the star of the drama. I mattered, of course, but I counted more elsewhere.
When you continue down this rabbit hole that the caregiver is not as important as the person threatened with a life-ending disease, frustration, doubts, and unhappiness follow. Because now you have no idea how to take care of yourself.
Caring for yourself becomes second. You doubt the time you allot to taking care of yourself. Then you feel guilty taking any time away from caregiving to take care of yourself, and on and on and on into a spiraling vortex of confusion and possibly depression.
Yet, this is what you see going on around you and what you've seen others do. And to do anything other than what you've seen others do or what others are telling you to do or what they're telling you you should do brings up fear and guilt.
Though the disease changed how my wife and I interacted, I let it change our relationship.
Instead of being husband and wife, we became caregiver and patient. Instead of walking through life hand in hand, I let pushing a wheelchair push me in a different direction.
What I wasn't able to do was play myself in the caregiving drama. When I finally changed my perspective, changed how I saw myself in this drama, I felt better, I felt renewed and deepened the relationship with my wife. We were no longer husband and patient. We became husband and wife. And at some point, it changed again. I now saw my wife as no different than myself. And that changed everything.
What I discovered was that I was equally important in this caregiving drama. I needed to care for myself not as a supporting player but as co-lead actor. I needed to uncover my subtle heart and free it from my fears and doubts. I needed to love my wife, unfettered by her condition and my ideas, beliefs, and attitudes. I needed to show up each day in front of her without my frustrations, sadness, stress, or tiredness. That's how I could care for her. That's how I could be supportive.
Getting to that point wasn't easy. But as I faced caregiving with more courage, more objectivity, and more love, my wife was able to do the same. We met in ways I could never have imagined. All because I wasn't satisfied suffering as I saw others suffer. All because I believed there was more to caregiving than what I had seen or read.
The first step was recognizing that I was equally important in this drama and acting accordingly. When I did, I uncovered a love story, not a tragedy. And we loved each other so profoundly.
So don't believe the person in your care is more important than you. It's not true. Dive deep into yourself throw out all the superficial crap you think about yourself. Throw out all the cliches you've heard about the caregiver role.
Uncover the well of limitless love below the surface. Let it shine like the Sun. Bathe in it. Let it shine on everyone around you. Turn your caregiving drama into a love story.
We are not going to change the whole world, but we can change ourselves and feel free as birds. We can be serene even in the midst of calamities and, by our serenity, make others more tranquil. Serenity is contagious. If we smile at someone, he or she will smile back. And a smile costs nothing. We should plague everyone with joy.
― Sri S. Satchidananda, The Yoga Sutras
If you’re a caregiver having difficulty in this role, feeling alone, frustrated and tired with no peers to share your experiences, on a rollercoaster ride of doctor calls and appointments, bouncing between good news and bad news, having more questions than answers, suffering as you’ve seen others suffer, having tried what everyone has said to try but to no avail, then you may be ready for a fundamentally different approach.
