I am living with End Stage Kidney Disease, now one of my many symptoms is early-stage dementia:
I’ve come to accept that my time might be shorter than I’d hoped. I hope I’m wrong. Death itself scares me less each day.
What truly terrifies me is the dementia.
When I’m stressed, the symptoms get worse. I lose words. I mix up names. I can see my mind glitching in real time, and it’s frightening. I watched my mom go through this. The hardest part wasn’t her confusion — it was watching people she loved get angry or impatient with her when she couldn’t find the right word. Unfortunately I was one of those people.
Now I’m living it. Some days I’m already angry at my own brain. I’ll be trying to say my granddaughter Aspyn’s name and Dyllan’s name comes out instead, it just goes right by me. And there’s nothing I can do to force it back. My daughter will gently correct me just so I am aware of it happening.
I’m sharing this because I need your help. If this happens:
Please be patient while I dig for the word, if I cannot come up with word you can fill in the blank or silence is okay.
If I use the wrong name and you know who I meant, just let it pass. Correcting every slip makes me feel smaller, scared and makes me want to be silent.
If I’m genuinely confused about who someone is, a gentle correction helps. “I think you mean Aspyn” is kindness. Frustration isn’t.
I don’t want this to put pressure on anyone. I just want to spend whatever glorious time I have with the people I love without being terrified of talking and my progression.
This is a symptom of my disease, not who I am. Your patience is a gift I can’t ask for strongly enough.
If you love someone with early dementia: they know. They’re scared too. Meet them with grace when you can. It matters more than you know. 💙
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Hey everyone. I use US Renal Care and I really need some advice, or at least a place to vent. I’m currently waiting to start Home Hemodialysis (HHD) soon, so I watch everything like a hawk and even canulate myself and pull my own needles. I worked at a hospital for 20 years. I was an anesthesia tech before I got sick. So I know when there is something wrong going on. Lately, the safety at my clinic has absolutely tanked.
The Sleeping Tech Incident
Tiday, a tech who had driven 300 miles before starting his 13-hour shift was taking me off the machine. He was yawning constantly. After returning my blood, he capped the arterial line. Then, completely out of it, he picked up another cap and tried to put it right on top of the cap he just put on. He suddenly jumped, snapped out of it, and said, "I just fell asleep."
He told the manager (an RN) that he needed to go step outside for some air. She didn't acknowledge the gravity of what he said at all. She just told him she’d take care of the two patients coming off, and sent him to handle two others. I asked him how much longer he had on his shift—he said two hours. He was going to continue doing treatments on four more patients while being so exhausted he was literally nodding off mid-procedure.
Traveling RN Confirms My Fears
Last week, a really great traveling RN came was on a few days of 16 hour shifts. The tech did something wrong to my buddy sitting next to me because he was distracted. The RN got mad and chewed the tech out, saying: "You were too busy talking to her instead of paying attention to your job. I work at many clinics in the US, and this one and Portland are the worst. They just let you do whatever you want without a nursing license. It is going to be my ass when you hurt someone or worse."
Later, that same RN came over to do my cannulation. He whispered to me: "You are a great guy, I would hate to see something bad happen to you. You make sure you do home hemo and get your ass out of here!" I told him he was preaching to the choir; I'm counting down the days.
Why the Clinic Is Falling Apart
This used to be a standalone clinic shared with a fantastic local Nephrologist who went above and beyond for decades. He retired, and a doctor I had previously fired bought the building and became part owner of the clinic. Because of Medicaid rules, I can't see a different Nephrologist while he is the clinic doctor, so I'm stuck with him until I transition to home hemo.
Since he profits off every full charge, the patient census has doubled in just three months. They had to add a whole new shift. Everyone at the clinic and his office is running around like a chicken with its head cut off. He has lost staff that worked for the old doctor for 20 years. Management is completely dropping the ball. I asked them to order my numbing cream four times over the span of a month. I finally forced the manager to check the status, and she said, "I just ordered it for you." When I pointed out I’d been asking for a month and was now completely out, she just shrugged and walked off.
My Dilemma
Here is my problem: I am the "Patch Adams" of this clinic. When I walk in, the place comes alive. I love the staff, the patients talk to each other for hours, and we've actually made it a fun place to be. They work incredibly hard.
But it has gotten to the point where I genuinely do not feel safe. Is there a way I can voice these severe safety concerns without pissing off the people who are quite literally keeping me alive? I don't want to make my remaining time here a nightmare, but someone is going to get seriously hurt.