Caregiver Secrets That Suffocate: Signs & Solutions
By Paolina Milana
November 21, 2023
Growing up Sicilian with immigrant parents, I was raised to follow an unwritten rule of cosa nostra, the culturally common code that translates to: “What happens in the family, stays in the family.” In our household, that meant keeping secret the fact that behind closed doors, our matriarch raged, battling demons she heard and saw who bid her to do evil. From the age of ten, I took on household duties, and by the time I turned 26, not only had I been serving for years in secret as my now 64-year-old mother’s primary caregiver, but I would find myself adding to my duties caring for my younger sister two years my junior, also diagnosed with paranoid schizophrenia.
I reluctantly accepted my fate, living a life of obligation; after all, who else would do it if I didn’t? Neither Mamma nor my sister knew how to drive or balance a checkbook. Neither one brought in any income to help pay the bills. Mamma needed supervision to ensure she’d take her prescribed antipsychotic drug cocktail. My sister had a major learning disability and physical limitations on top of her diagnosed mental illness requiring me to not only monitor her meds but to bathe and dress her; the drugs she had been given rendered her near-catatonic.
Pretending that everything was fine to the outside world got easier with practice, but faking that everything was okay was exhausting. Freedom was what I craved, but I battled with the guilt of even wanting it..
I felt hopeless with no resolution in sight.
Yet, at just that moment – when I needed support most – I met someone who saw in me something that impelled her to intervene. What it was that she saw on my face, in my eyes, or in my demeanor…? I can only imagine. But I am grateful that she was paying attention, refusing to let me out of her sight until I agreed to have a chat with a friend of hers, a licensed therapist, right then and there.
She asked me, “What’s going on?” I replied with my usual: “Nothing.” She then responded with four words that would change the trajectory of where I had been headed: “Tell me about ‘nothing.’” This simple ask gave me permission to spill my secrets and gave me the start of my coming back to life.
No list of identifiers exists that makes it easy to spot someone who has reached a point of no return…especially since as family caregivers we often become masters at the art of putting on that public face that everything’s okay when it’s not. While I stopped short of maltreatment with either of my family members, my mental state spiraled to where I fantasized about it. Red flag…HUGE red flag.
I can imagine that some of you reading these words at this moment may be struggling with similar feelings and wondering what to do about them. You are not alone. And I hope what I learned from my own experience and share here with you offers some guidance in yours.
WARNING SIGNS & SOLUTIONS:
- I didn’t know it back then, but “faking it,” suppressing emotions, harboring resentment, and seeking “escape” from difficult circumstances are all red flags. I learned that experiencing any of these things (let alone all of them at the same time) meant I had reached a point that put me and my family members at risk. Reaching out for support from a friend, professional, or anyone else, can alleviate pressure and provide clarity.
- We can’t see the label from inside the bottle. And when we are surrounded by madness, it may be impossible for us to find our way out of the darkness that consumes us. We all may be engaging with friends, colleagues, even strangers, and they may be struggling in silence. Don’t discount those tiny tickles you may feel that something isn’t right. Say something. Do something. My papà used to say, “Meglio dire chi sa invece di chi sapeva.” Translation?: Better to say “who knows” instead of “who could have known.”
- Caring for any family member who is unable to care for themselves is never easy. Feeling burdened is understandable. Acknowledge and address your feelings. The more we suppress our own emotions and neglect our own care and keeping, the more at risk we put ourselves and others.
- Consider your feelings of resentment or [fill in the blank] as signs that it’s time to refuel, just as if your car’s gas gauge is pointing to your tank being empty. Many caregivers may feel it’s a sign of weakness to ask for help, but the exact opposite is true. It takes a lot of strength to wave that white flag, to surrender to powers greater than our own, and to share what’s going on with a friend or a therapist and give ourselves the fuel we need to carry on. No matter how hard you might try, you won’t get very far running on empty.
FOR MORE SUPPORT:
The USC Family Caregiver Support Center is a great resource to explore and to confidentially get the help you may need.
If suicidal thoughts are what you’re experiencing, help is just a phone call away. Dial 988 and get connected to the Suicide and Crisis Lifeline.
- Family Caregiver Alliance
- Administration for Community Living, National Family Caregiver Support Programhttps://acl.gov/programs/support-caregivers/national-family-caregiver-support-program
Paolina Milana is an award-winning published author, podcaster, and mental health advocate. Paolina began her career as a features writer for a daily newspaper, then crossed over into public relations and marketing, succeeding as a communications executive. She is currently working on a collaborative book project with 20 family caregivers, each of whom is authoring a chapter. She is the USC Family Caregivers Support Center community engagement specialist.