Feeling Overwhelmed with Caregiving Support Being Reduced

2025 stands out as one of the most challenging years of my life. I happily began the year sober, a feat that still feels surreal as an adult woman in my mid-forties - 550 days, by the way. In 2024, I was riding the high of performing on Broadway, a dream come true for any singer. How could I possibly top that?

A sudden loss of support

I had so many hopes for 2025 that were immediately crushed because in February, my caregiving support was drastically reduced. It cut my hours to where I was only allowed to use the bathroom twice a day. I did what I had to do to keep my hours. I sued.

This legal battle stretched on for eight exhausting months. Hundreds of phone calls, emails, voicemails, and delayed court dates. Before I started this fight I did not know in most legal battles the defendant would push back the actual court proceedings until the person gives up. I think a lot of people actually do give up, but this is my life. I could not give up, I had to keep pushing.

Approved, but still waiting

By the end of that ordeal, I was finally approved for a medically fragile program in January 2026. It's May! Five months later, my caregiving hours still have not been implemented, leaving me struggling to manage the immense demands of living with a disability.

This is what a typical morning looks like for me: my caregiver comes into my room, turns on my water, gathers my clothes, pulls down my covers, and rolls me over to wash me. She helps me get dressed, places my sling under me, transfers me to the toilet, wipes me, and then moves me to my chair. She then washes my upper body and face, puts on my clothes, fixes my hair, helps me brush my teeth, puts on my makeup, and even helps me choose my earrings and necklaces.

This morning routine is NEVER completed in just an hour. On shower days, it can take up to two and a half hours. Yet the government seems to dictate every speck of basic needs provided to people like me.

The unseen mental and emotional toll

This constant fight is draining, especially on top of chronic pain and the reality that I am never truly alone, someone always needs to be there to help. I crave independence and privacy, but rarely get either.

My mental health has suffered as well. My Medicaid only covers limited mental health services in my town. I have called about 11 different mental health services other than the one I’ve already “graduated” from, which means I’ve supposedly gotten all the help they can offer.

Behind the social media mask

I’m sad. I’m struggling. I’m burdened.

I'm actually very well known for being super positive on social media, but when every day begins with the anxiety of wondering if anyone will be there to get me out of bed, it feels overwhelming. I'm tired. I wonder what it will take for things to truly change.