First-grade teacher of Liverpool shares journey of caring for her husband who was initially diagnosed with primary progressive aphasia, then frontotemporal dementia
By Deborah Jeanne Sergeant
At age 47, Liz Jarosz of Liverpool could never have imagined that her husband, James, then 50, would require her care for a form of dementia.
But the diagnosis three years ago helped her make sense of changes in his language.
Initially described as primary progressive aphasia, the condition seemed to mostly describe challenges in speech, but as James manifested more behavioral and personality changes, the diagnosis shifted to frontotemporal dementia in fall 2024.
“It presents very differently from Alzheimer’s,” Liz said. “My dad has Alzheimer’s and there are a few similarities but it’s also very different. The challenges are different at this stage in life.”
James seems stuck in an endless loop of walking and riding his bike and walking. Liz said that it’s hard to keep track of him. He doesn’t have the ability to understand that walking in certain places isn’t safe or that petting a dog that doesn’t belong to him may be dangerous.
“You can’t reason with him as to why it’s not a good place to be,” Liz said. “Other people wander occasionally. His is all day, every day. Physically, he’s in great shape because he never stops moving. I couldn’t physically stop him and sometimes he gets a little physically aggressive.”
When his children arrive home, he doesn’t acknowledge them, but he blows kisses to birds flitting through the back yard and tells them he loves them.
James may piece together explanations for life that doesn’t make sense. He has also picked up swearing — something he never did before. He struggles to remember his son’s name and calls him “The Guy.”
In James’ reality, what he does makes sense. Liz compares his mentality to that of a 4-year-old, but he’s in a grown man’s body.
“He’s very aggressive and agitated 90% of the day and is on all sorts of meds for those things,” she said. “It’s a constant physical and emotional battle. I’m exhausted and in constant stress.”
Fortunately, James is able to care for his personal needs. He can make himself a sandwich but lacks the ability to decide what kind of sandwich to make. If Liz selects the ingredients, he can assemble the sandwich.
Supports like the Alzheimer’s Association have helped Liz, as the organization helped her find a support group for caregivers of early onset patients.
“I’ve never heard of anyone except Bruce Willis having this,” she said. “The group was a lifesaver, as they’re people closer to my age. I’m always the youngest in the group before.”
Most people with dementia are in their 80s or 90s and their caregivers are typically a similar-aged spouse or their child who’s in her 60s or 70s.
Upstate Geriatrics has also helped Liz.
“For the first time I had a medical team help support me with the clinical and the social-emotional side and behavioral issues,” she said. “Having the most wonderful, understanding doctor helps.”
She was able to speak with a physician and social worker one-on-one without her husband present, a dynamic she felt helped.
Community support has proven a lifesaver, especially since she has few family members living nearby.
“I am very blessed with friends,” Liz said. “I truly have a very core group of multiple friends that would do anything for me and do things for me. It’s shifted from doing things for him to doing things for me. I’m the one who needs to survive. My friends have been such a blessing to me. I have a close-knit group in my neighborhood. They’re a two-minute walk away. You don’t find that much anymore. I have a whole other network of friends. A woman who’s been my teammate at school for 16 years and she’s a lifeline for me.”
It’s tough that she cares for someone who looks like her husband, but he’s really not the same person anymore. It’s also difficult when people spend a short amount of time with James and say that he seems fine, but Liz knows differently.
At her stage in life, Liz’s children are nearly adults, at that pivotal point where they have matured considerably, yet still need their parents’ guidance.
“My kids come across as very resilient,” Liz said. “They may look like they’re doing great, but few people recognize that struggle. This all started happening when they were in their late teens. It’s been seven years that it’s been going on. This is a time in their live when they should be having an adult-to-adult relationship with their father. I’m their everything. I still have to work. I can’t be home all day with him. Usually, people with this disease are retired. I’ll have to work longer as he can’t work.”
Full-time care facilities typically do not accept patients younger than age 55 and Liz is not sure when she will need to seek this type of care for James. At this point, he attends a day program weekly where most other participants are at least in their 70s.
“I told him he was volunteering there,” Liz said. “I started sending him there because I needed to have that in his routine for when I truly needed it. I’m thinking sooner than later, I’ll need care for him all day.”
James also attends a support group and receives speech therapy. Insurance does not cover caregivers and long-term care insurance is unobtainable for people who have a diagnosis already.
In addition to coping with her children’s losses and the practical logistics of arranging James’ care, she’s also grieving the loss of what she imagined what this time in their lives would be: preparing their teens for the adult world and anticipating the empty nest and retirement.
“All of that is gone,” Liz said. “There’s emotional devastation of losing that and losing someone, yet they’re still right in front of you. It’s so emotionally draining.”
Liz works as a first-grade teacher, a career that’s already emotionally demanding. With James’ income lost — he managed a commercial flooring warehouse — she finds herself as the sole breadwinner with one child in college.
“There are so many challenges and I try to overcome them everyday and not get stuck in that struggle,” Liz said. “It is an every day thing, having to do it all. I did a lot of it before. It’s like being everything to everyone all at once.”
She participates in weekly yoga classes, knowing that taking care of herself is foundational for taking care of her family.
She advises other caregivers to “find support such as a support group with other people who truly understand what it’s like. Friends and family want to help but without any experience, they cannot understand. Support groups can be online or in-person. You can be active or observer in them. It’s nice to see what other people are going through.
“Don’t feel guilty about finding your joy and taking care of yourself,” she said. “You can’t be a good caregiver if you’re not taking care of yourself.
“Even the hardest moments, find the joy. I call it ‘finding the sparkle.’ It doesn’t have to do with anything with the person you’re caring for. You really need to find people who live this. And you can say, ‘This is the worst day ever; I can’t do this’ and they’ll say they understand.”