This as-told-to essay is based on a conversation with Fran Judd, a 76-year-old physical therapist in Sonoma County, California. Judd works full-time to afford care for her brother and daughter with disabilities. Her brother lived in an ADU in her backyard for two years. This interview has been edited for length and clarity.
I feel like I’m working so many full-time jobs.
I’m a physical therapist. I run my own business that uses horses to support people with disabilities through an equine-assisted program, which I’ve been running for over 25 years. There’s that, plus caring for my brother, who is 85, plus my daughter, 31. I don’t take real vacations, but I did go to Vietnam for one of my three sons’ weddings. Everything I do revolves around the family.
I’ve been married and divorced twice. I’ve been on my own for 25 years. I’ve worked in every level of care, acute settings, rehab, home health, assisted living facilities, and aquatic therapy. Because of my love of horses, I have been trained in hippotherapy, or treatment using a horse. I work with children and adults of all ages.
My mother lived to be 106, and she always appeared 20 years younger. She died in 2019. She had earlier cared for my father, and I cared for her.
My 85-year-old brother has a complex, deteriorating neurological condition, and he is unable to navigate his medical needs or care. After our mother died and the pandemic hit, he was really isolated. I asked if he wanted to come out here because I had a “granny unit” behind my house available. It’s essentially an ADU.
The ADU was built as a guest house by the original owners in 1977.
I have lived here since 2001. At the time, we didn’t know what his illness was, or that the condition he had meant he would get weaker so quickly. His balance started to suffer, and he couldn’t drive any longer. When he moved here in 2021, he was ambulatory and used a walker.
Over the last five years, he’s gotten to the point where he is wheelchair bound and very dependent on care. I set about trying to get him set up with a proper health plan and get him the support he needed.
Within a year, we needed to hire caregivers for him. We would hire people for eight hours of care each day, which costs between $30 and $45 an hour. He had long-term care insurance that lasted about a year, but it wasn’t renewed because of the policy’s terms. He moved out of the ADU in 2023 and into a senior community. He had a little apartment that cost $4,500 a month, and I hired a caregiver for him for eight hours a day, paying about $6,000 monthly.
His health continued to decline, though, and he had multiple medical issues that put him in the hospital. He was diagnosed with multiple systems atrophy, and he’s lost a lot of his strength from being hospitalized so many times. We moved him into various long-term care facilities, but his needs haven’t been fully met. My ability to steer his care is being hampered by the facilities and Medicare rules.
He doesn’t make that much money, and it’s been an out-of-pocket experience.
He worked in a molecular microbiology lab doing research for professors, but he didn’t earn a whole lot. He gets Social Security and a small pension, but it’s not enough. He could pay his rent, but he wouldn’t be able to afford caregivers, so I’ve been helping him out. I’ve taken loans against my house to help pay for everybody.
I finally got him on Medi-Cal, which is California’s equivalent of Medicaid. It took me three years of applications, interviews, door-knocking, and phone calls. It started to feel like another full-time job. I haven’t found the senior advocacy programs too useful. I figured out there are 100 different medical plans, and he didn’t qualify because he was just over the cutoff.
I’m still looking for an intermediate care facility. Nursing homes are very institutionalized, and his mind is still there. He needs activity and interaction with people. He’s been in four different facilities in the last year because we can’t find the right placement or one that we can afford, since many are only private pay. I’m pulling my hair out because the assisted living facilities are saying he needs more care than they can provide, and the skilled nursing facility says they want him out of there because he doesn’t need that level of care.
I don’t know how people can afford long-term care.
Most of these facilities are upwards of $10,000 monthly. I’ve had to scrape my lifestyle to afford this, and I’m accruing a lot of debt. I’m not going on vacation or shopping sprees, and I’ve been very careful about spending. We’ve gone through most of his savings, and he had a modest stock portfolio that we used to buy him a wheelchair-accessible van and power wheelchair, but he can’t use that wheelchair in his current facility.
He’s stuck between a rock and a hard place because when he’s in a skilled nursing facility, then Medicare and Medi-Cal pay for it, but if he goes to an assisted living facility, then that’s out of pocket, but he has a better quality of life.
It’s taken so much brain power and energy to try to find the right people. There are supposed to be all these senior advocacy programs, but what they do is give you another phone number to call, and then I’ve got an arm’s length list of phone numbers and never get anywhere.
I am also supporting my daughter.
We adopted my daughter at birth, not knowing she had special needs. I figured it out quickly because of my career as a physical therapist, but I didn’t know what was wrong. I fought to make sure she did not end up in assisted living or a group home.
All her life, I’ve been her primary caregiver. She sees her dad, but I handle 100% of her care. She has a rare chromosome disorder called Pitt-Hopkins syndrome, and she didn’t have a proper diagnosis until she was 19, though we knew she had major developmental disabilities. She can’t be alone for any reason, for any length of time.
My daughter has her own Medi-Cal, but it’s a different program because she has developmental disabilities.
Everything was delayed for her. She was a late walker and late talker. She’s still limited in her speech and cognition. She’s been in adult day programs for almost 10 years, and she still lives with me. I hire caregivers for her when she’s not in the program and I’m not at home, as well as on weekends, because I work mornings. I also have a canine companion who helps.
She is mobile, and I’ve taken her on family trips. She’s very social, and everybody really loves her. I take her to lots of concerts and movies, which took a long time for her to be up to. Of course, she rides horses, and I’ve had her involved in hippotherapy from the very beginning, which has increased her abilities very quickly.
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