Hello! Thank you for your interest in helping my mom, Jacqui Yerkes, with caring for her husband and my dad, Tim, through life as he faces Progressive supranuclear palsy (PSP). PSP is a rare condition that falls under the umbrella of FTD (frontotemporal dementia/degeneration), which is a group of brain disorders categorized by the degeneration of the frontal and temporal lobes of the brain. Most FTD cases develop between the ages of 45 and 64, and FTD is the most common form of dementia in people under 60. Currently, there are no known cures or treatments to slow or stop the progression of FTD; it is a fatal disease.

My dad was diagnosed in early 2024, around his 57th birthday; looking back, we think FTD-related changes in him may have started and gradually progressed in the years before that without anyone understanding what was going on. Until around Thanksgiving of 2023, he worked as a respiratory therapist at Atlantic General Hospital, appreciated by his patients and coworkers for both his competence and kindness. Before caring for others as a respiratory therapist, he was an infantry soldier and Army medic in the 82nd Airborne Division. My dad has chosen to continue living in service to others by participating in research studies at Penn Medicine and has decided to donate his brain there, in the hope that one day no other person and their family has to experience FTD.

For my dad, the main issues FTD has brought are progressive changes to his personality and difficulties with language skills, problem solving, movement/motor control and balance, use of his eyes (blinking, focusing), and use of his mouth (eating, swallowing, speaking).

My parents weren’t exactly planning on my dad having to “retire” at 56/57, and my mom is an elementary school art teacher who wasn’t planning on being ready to retire yet, either. I know this change in circumstances, while navigating her own grief and figuring out how to care for my dad, has been difficult for my mom. She has really embodied the “in sickness and in health” vow to her husband of 32 years, putting so much time and energy into helping my dad and our family while still being a great teacher, friend, mom, and new grandma. We are all very lucky to have her. I know those who love her do their best to help her remember that she doesn’t have to do it all, and she deserves care, too.

With the loss of my dad’s job, paying tens of thousands of dollars to an elder care attorney to hopefully enroll my dad in Medicaid while ensuring my mom can still have a retirement of her own one day, and taking on medical bills for appointments, speech therapy, and home health nurses, this disease has brought financial stress to my parents. In-home health care while my mom is at work has been a relatively new expense, which she has been having to pay for completely out-of-pocket.

The money raised by this fundraiser would help offset some of these costs. It would also help with converting my parents’ shower into one that is handicap-accessible. My mom’s goal is to have my dad continue living at home; if you know them, you know my dad is much taller than my mom! Making sure everyone can safely continue to care for him is a top priority. We are waiting to hear about my dad's Medicaid enrollment application, which is currently delayed, and the future of Medicaid in general is unclear. If he gets Medicaid approval and it functions as we'd expect, that coverage would take care of only about half of the cost of in-home nursing (which currently costs $35/hr, $140/half-day). As the disease progresses, my dad will need this care at home all day while my mom is at work. This care will also be needed while she continues doing daily life, such as going to the grocery store or having some time for herself and with friends, which we all deserve. The in-home care will be a significant ongoing cost for their household.

I know my mom would not make this Gofundme page for herself, but she would be very grateful for any and all support. We’ve been sincerely moved by the kindness of the community that’s assembled for our family, helping financially and with their time and attention by being a listening ear, giving hugs, delivering meals, spending time with my dad while mom’s at work, and so much more. Thank you SO very much to those who have already reached out to ask about a Gofundme, and to those who give at and/or share this page.

For more information about FTD and PSP, we’ve found resources from the AFTD and Penn Medicine helpful: https://www.theaftd.org, https://www.pennmedicine.org/for-patients-and-visitors/patient-information/conditions-treated-a-to-z/progressive-supranuclear-palsy