My mother, Deb, was diagnosed with an aggressive dementia (FTD lvPPA) at only 57 years old in March of 2025 after several years of noticing symptoms. I'm Jay, her youngest child, and I upended my life at 26 to take care of her. Why? My mother is the kindest, most thoughtful, loving, and accepting person I have ever had the pleasure of knowing. The question upon her diagnosis wasn't, "Who's going to care for you?" It was, "How soon do we need to start?"

Given her age and a myriad of factors (a sudden out-of-state move, early immediate retirement from self-employment, my wife and I both being in our 20s, limited support network, etc.), every day has been an uphill battle making sure she has adequate medical care and financial support. While we have been able to secure around $1,200 per month in disability benefits and receive discounted health insurance due to our low income, that is far from enough when we look to the near future and the care needs she will inevitably have.

At the current pace of her disease's progression, we will be bringing in some level of help (adult daycare or part-time nursing) in the fall and will likely need to move to full-time in-home care or a memory care facility within the next year or two. I viscerally remember asking her diagnosing neurologist, "What will her life look like in ten years?" and he explained to me that 10 years is already overshooting her life expectancy, much less the length of time where she can have a quality of life. She is unlikely to have more than 2-5 years left of being able to speak, read, write, and understand. Unfortunately, we have seen the timeline he presented playing out even faster than expected. As she loses the ability to process language, communicate clearly, and recollect short-term memories, she has also developed tremors, weakness, vertigo, and more physical symptoms we never expected would come so early in someone so physically fit. These symptoms have led to her needing the support of a transport wheelchair at times and assistance simply navigating around our home. After a battery of diagnostic tests which have left us with thousands in medical debt already, it's clear that this, sadly, is just the next stage of her illness making itself known and nothing can be done.

For those of you who know my mother as the fearless therapist whose life revolved around 1) communication and 2) physical activity, you can imagine the depth of grief we have all been experiencing, her most of all.

The purpose of this campaign is to create a fund for her long-term care, which, as of right now, is a terrifying thing to consider not only emotionally but financially. Our family has very limited assets and funds. As a family, we easily have $75,000 in debt we're making payments on monthly for home repairs, medical bills, student loans, and more. Right now, our take-home income monthly is around $4,000 before disability benefits. Frankly, I'm grateful that we're able to make do with what we have and the guilt for not providing a higher quality of living to my mom will never go away for me. Even after insurance and other options, the cost of any kind of full-time care for her in our area would require me to take out, likely, at least another $100,000 in personal debt through the course of her life.

It truly breaks my heart with grief, shame, and guilt that I'm not able to singlehandedly provide her with everything she needs for the rest of her life. If this diagnosis had come at a "fair" time -- if I had another decade or two to become the person she deserves -- maybe I would be able to. But, at 27 and 58, this uncertain future of ours often feels entirely insurmountable without help. And that help, I hope, can come from the countless people whose lives have been deeply touched by Deb. She has devoted herself so fully to family, friends, and communities that I hope we can receive even a fraction of what she's given.