I Was 11 Years Old When I Learned What Dialysis Was

Not from a doctor or a textbook. I learned because my mom's kidneys were failing, and suddenly, three times a week, we had to go to a clinic where a machine would clean her blood because her body couldn't anymore.

I remember the first time I saw her hooked up to that machine. The tubes. The beeping. The way she looked so tired afterward. I remember thinking, "I need to understand this. I need to know how to help her."

That was 1995. My mom fought kidney disease and dialysis until 2010 fifteen years. Fifteen years of 3 AM medication checks. Fifteen years of learning what foods she could and couldn't eat. Fifteen years of watching her be strong even when her body was failing.

I became a caregiver at 11, and dialysis was my teacher.

The Reality Nobody Prepares You For

When my mom started dialysis, nobody gave me a job description. I was just expected to figure it out. So I became everything she needed: transportation coordinator, diet manager, medication enforcer, and emotional support.

Three times a week. Every week. For years. No breaks. No "I don't feel like it today." Monday, Wednesday, Friday at 11 AM shaped our entire lives. I couldn't take certain classes. I couldn't work a 9 to 5 job. Everything revolved around that dialysis schedule.

Each session lasted 3 to 4 hours, and afterward, she'd come home completely exhausted. The first few hours were always the hardest extreme fatigue, nausea, lightheadedness, muscle cramps. I learned to have a light snack ready, help her to bed, keep the house quiet, and just let her rest.

What I Learned the Hard Way

The Diet Was Brutal

At 11, I barely knew how to cook. By 13, I was reading nutrition labels like a scientist and making kidney-friendly meals. Almost everything my mom loved was suddenly restricted:

No bananas (her favorite this broke my heart)
No tomatoes or potatoes
No salt
Limited fluid intake only 32 ounces per day

I'll never forget summer days when she was so thirsty and I had to say "no more water today." That guilt still sits with me.

Some days she "cheated" on the diet. And I had to learn that controlling everything wasn't my job. Supporting her was.

The Medications Never Stopped

By age 12, I was managing 12 different prescriptions. Phosphorus binders with every meal. Blood pressure medications. Iron supplements. Vitamin D. Anti-nausea medications. Plus whatever she took before dialysis started.

I bought weekly pill organizers, set clock alarms, kept a medication schedule taped to the fridge, and maintained a log of everything she took. Perfect adherence was impossible, but we did our best.

The Fistula Became Our Lifeline

The fistula a surgically created access point in her arm where they'd insert needles for dialysis became a source of constant anxiety. It was her lifeline, and protecting it became second nature.

Every morning, I'd check for the "thrill" that buzzing sensation that meant blood was flowing properly. No blood pressure cuffs on that arm. No blood draws. No heavy lifting. No tight clothing.

We had so many scares year after year when it clotted. Emergency surgery saved it. That was terrifying.

The Emotional Toll Nobody Talks About

Dialysis doesn't just affect the body. It destroys the spirit sometimes.

My mom went from outgoing and joyful to withdrawn and hopeless within the first year. She'd say things like "I'm just waiting to die" and "This isn't living, it's just existing." The dialysis kept her alive, but she didn't always want to be alive. That's a brutal thing to watch at any age, but especially at 11, 13, 16.

She lost her independence. Couldn't work. Couldn't eat what she wanted. Couldn't drink when thirsty. Every freedom was taken by this disease.

And me? I carried guilt constantly. Guilt when I was tired of caregiving. Guilt when I wanted a break. Guilt when I resented her. Guilt when I thought about my own life.

From age 11 to 26, I was "the caregiver." I didn't know who I was outside of that role. My friends were going to parties. I was checking medication schedules. I lost my adolescence to caregiving.

But here's what I also learned: You can love someone and be exhausted by caregiving at the same time. Both things can be true.

The Financial Reality

Even with Medicare (which kicks in after 3 months for dialysis patients), the costs never stopped:

$300 to 600/month on medications
$150/month on transportation
Special diet foods that cost more
Lost income my mom couldn't braid hair that was her way of earning money, and I couldn't work full-time and do school.

We applied for every assistance program available. Patient assistance programs. Medicaid. Social Security Disability (which took 2 years to get approved). The dialysis center social worker became our most valuable resource.

We cut everything non-essential. No cable. No eating out. Thrift store shopping. Her health came first. Everything else was negotiable.

What Kept Us Going

Around year 10, my mom and I had the conversation nobody wants to have. She told me that if she ever got to the point where she couldn't recognize me, where she was just existing and not living, she wanted to stop dialysis.

We cried. We held hands. And then we documented it with advance directives a living will, healthcare power of attorney, and eventually a DNR order.

Having those conversations gave us both peace, even though they were incredibly hard.

We also found small joys we protected fiercely:

Her favorite shows during dialysis
Gospel music always playing in our house
Phone calls with friends
Doing her grandkids' hair when she had energy

The disease took a lot, but we held onto what we could.

Eventually, she agreed to try therapy and antidepressants. They didn't fix everything, but they took the edge off. I wish I'd gone to therapy during those years too, instead of waiting until after she died.

The Grief That Came After

When my mom died in 2010, I felt devastating loss mixed with relief that she wasn't suffering anymore. Then guilt for feeling relieved. Then freedom because I could finally live my life. Then more guilt for feeling free.

Grief after caregiving is complicated. You don't just lose the person. You lose your purpose, your routine, your identity as a caregiver.

I learned that the guilt never fully goes away. I still wonder if I did enough. But I also know I showed up every single day for fifteen years. Some days strong, some days broken. But I showed up.

Why I'm Sharing This

If you're reading this because someone you love is starting dialysis, or you're already in it and feeling overwhelmed, I see you.

This isn't easy. It's exhausting, it's scary, and most days you're just trying to figure out what to do next.

Here's what I want you to know:

You're doing enough, even when it doesn't feel like it.

Use every resource available the dialysis center social worker, patient assistance programs, online caregiver communities, therapy for yourself. Don't wait to ask for help like I did.

It's okay to not be okay.

You can love them and be tired at the same time. You can want them to live and be exhausted by the effort. You can grieve while they're still alive.

Take care of yourself too.

Sleep. Eat. Move your body. Protect one thing that's just yours. Say no sometimes. Ask for specific help. You can't pour from an empty cup.

Have the hard conversations now.

Talk about advance directives. Talk about their wishes for end-of-life care. Talk about what matters most. Don't wait until it's too late.

You're Not Alone

Fifteen years taught me that caregiving is one of the hardest things anyone can do. But it also taught me about the depth of love, the strength we don't know we have, and the importance of showing up even when it's hard.

This is why Day1father exists to honor every person who's ever shown up for someone who needed them. To create a community where caregivers don't have to face this alone.

Your presence is their peace. Even if they can't say it. Even if it doesn't feel like enough.

It is.

Welcome to Day1father. 💙

This story is dedicated to my mom, who taught me strength even in suffering, and to every caregiver who shows up day after day, even when it's hard.