The Caregiver's Masks
Last updated: June 2023
I can only speak for myself, of course; what I write here won't resonate with everyone. Whenever I begin an article, I wonder if anyone will relate to it. Eventually, I end up writing for that one person, maybe you, who totally gets what I'm trying to express.
Maybe it's because I'm a Libra, and a people pleaser. Maybe it's just my upbringing. Whatever it is, I've discovered that I've collected several of the caregiver's masks that are geared toward caregiving and advocacy through the years. They fit pretty well, and I had a mask for every occasion!
The it's going to be okay mask
The first mask I put on was the one that betrays no fear or panic. When my wife was first diagnosed with advanced breast cancer, I was scared, but I didn't panic, or lose my cool. I'm not saying this is a good thing. The it's going to be okay mask slipped on without my even noticing.
It grew heavier and more suffocating during the two-week wait for her diagnosis to come in, but I didn't know how to take it off. Who knows how long this mask can remain glued on? It became so natural to me, I believe it fused itself to my personality, becoming the foundation that all subsequent masks adhered to.
The clown mask
Blame it on my upbringing as a comedian's daughter; I believe there's nothing that laughter can't make better. Lynette told me several times that she relied heavily on this mask, so I donned it frequently.
Behind it, however, I felt like I was coming apart at the seams. She didn't see it, her doctors and cancer team didn't see it, and only one or two friends saw how shattered I was beneath it. It was a useful mask, to be sure, and was nearly impossible for anyone to peek beneath.
The I'm fine, everything's fine mask
This mask that came out whenever anyone asked me how I was holding up. The adhesive for this one was pure caffeine. As long as I had a coffee or tea in hand, everything was fine. "I have plenty of energy; don't need any help, thanks."
This mask is the biggest liar, though. There may be strata of fineness, and if you're wearing this mask, you're in for a fall. As soon as you're no longer a caregiver—however this happens—it'll shatter into a million pieces and you'll spend your first year alone in a state of exhaustion. Mental, physical, and emotional exhaustion.
The I'm not angry or impatient mask
This mask doesn't give a hoot about your self-care. It doesn't care about you and your needs. When your loved one is in pain and going through grief and fear, the last thing you want to do is show impatience or anger toward them. But sometimes, caring for a cancer patient can really challenge your ability to back-file your emotions.
In time, I learned to state these feelings without becoming testy, passive-aggressive, or condescending. When my wife became demanding, I'd simply say, "I'm dancing as fast as I can, hon." It didn't always sink in on her that I was doing my best with the hand we'd been dealt, but usually it did, without causing any anger or hurt.
The I'll be okay after you leave mask
In the end, it was this mask that I applied the most. Lynette felt terrible about leaving me in uncertain financial circumstances, but I reminded her that I'm strong, and that I'd been on my own for many years before we met. Inside, though, I felt scared to death. My social security check isn't very much due to working as a musician for most of my life, and we had no burial or life insurance. And I had my adult autistic son to care for as well.
Due to my health, I couldn't work outside the home, and it had been 20 years since I'd handled household finances. There's a lot of business to take care of when someone dies, and you have to take care of it when you're falling into the abyss of grief and exhaustion.
"I'll be okay." I told myself. "I'm strong beneath it all." The thing is, this isn't a mask at all. I figured out that it's an affirmation that had to be claimed. For me, it became a mantra. A friend gave me a ring with the inscription, "I am enough" on it, and I can't tell you how much that helped me during the first few months after Lynette's passing.
Where are those old caregiver's masks now? I threw them out. They were mostly worn to keep Lynette stress-free and unburdened, but these days, I have no need to hide my real feelings from anybody anymore. These days, if someone doesn't like me, too bad.
After over 40 years of caregiving, I've finally learned to live authentically.
Advanced breast cancer is an isolating and lonely disease.