June 24, 2026

It has been a while since I’ve written. I’ve wanted to–the laptop has called me–but honestly, I’ve been struggling to consolidate my thoughts.

What’s been happening in life? More of the same with my kids–either advocating, accommodating, or adjusting.

Work? Still underrecognized, overextended, and constrained by systems that aren’t ready for my ideas. Seems like a fair bit of advocating, accommodating, and adjusting there too.

In March, it became clear that my mom’s cognitive impairment was worsening. She has had cognitive impairment for a few years now. I’ve been trying to get her to move here for years. I accompanied her to her primary care doctor’s appointment to ensure her doctor didn’t repeat past mistakes (like ordering a mammogram 45 mins away in a business city). Her labs indicated she had not been taking her medication correctly.

I worked to fill her monthly pill box. I installed cameras in her house so I could visualize what is happening. I called every morning to get her to take her medicine. Something still wasn’t right.

In April, I received a call from a doctor’s office where she is not a patient that she was there, did not have an appointment, and did not know how to get home. She had driven 45 minutes to a doctor’s office. For reference, her doctor’s office is only about 10 minutes away.

I brought her back up with me and she’s never left. She originally agreed to move. That moment made my heart sing–it eased the anxiety I’d been holding onto for so long as an only child.

She helped me load up my car, watched me change her address on USPS.

A couple weeks later, she started packing her bags everyday and saying she was going home. No longer agreeing to live with me. That has become our new Groundhog Day…her asking to go home, and me saying, “We will go home in about a week.” It only took one argument for me to figure out that it is easier on everyone if I just lie. I guess this is what you call a “white lie.”

I can discern it is for her own safety, and that this lie is not harmful. I think it’s the forced idea of living the lie that destroys me…that I’m trapped in this seemingly perpetual state. In a world where I hardly ever get to be my authentic neurosparkly AF self, my one completely safe haven–home–is now shrouded in a mask as well.

Nothing can prepare you for this. No textbook, no lecture, no support group. As someone who has endured a great deal of loss in life, it is a fresh, new kind of hell to watch someone fade away slowly from Alzheimer’s.

Right now, nowhere is safe anymore. I cannot be my true self anywhere. I’m tiptoing around, accommodating everyone’s needs, while my nervous system is ravaged 24/7. I know I’ll adjust. I know I’ll emerge from this stronger, smarter, and even more compassionate.

Is that future version of myself worth the present sacrifice?