When Jan Castora’s wife Josephine was battling a form a dementia, all he could think about was keeping her in their home “for her comfort, for her safety and for her dignity.”
He would get her up in the morning, help her get dressed, cook breakfast, help her with her hygiene. But he soon realized that he needed help. Over time, Mrs. Castora lost her ability to speak. She also lost control of her hands, arms and legs. At first, she could balance on her legs with help. Then because she couldn’t walk, someone would have to pick her up from her wheelchair to where she needed to go.
He hired a couple of ladies to help — to give him regular breaks from caregiving. They added to the support that Hospice was providing.
It was a lifesaver.
“There is nothing more challenging than the sacrifices you have to make to provide care for a loved one,” Castora said. “You have to give up your life and it is a tremendous sacrifice… The stress, the helplessness, the care does not change tomorrow. It doesn’t get better. You have nothing encouraging to look forward to. It’s very depressing,” he said.
Josephine Castora died on Oct. 7, 2019 of aphasia frontotemporal dementia. Today, Castora is paying it forward. The Strongsville man donated $1,000,000 to the Alzheimer’s Association to create a caregiver relief program. The Jan & Josephine Castora Family Caregiver Relief Program pays for agency caregivers to assist families needing help caring for someone with Alzheimer’s or another dementia.
The agency aides can provide companion care or personal care services such as bathing, dressing and grooming. The intent of the program is to allow caregivers to take regular breaks to tend to their physical, emotional and mental health. “I would spend time with the aides who came into our home and try to learn more about their job,” Castora said. “They would share with me how dire some of the environments were for people who didn’t have the ability to hire people to give them a break. So, I decided I was going to try to help people who weren’t as blessed to do what I was doing with my wife.”
Lindsay Walker, Executive Director of the Alzheimer’s Association Cleveland Area Chapter, said, “This fund is going to help so many individuals in our 22-county area of northern Ohio. Every family I meet has their own caregiving story or are familiar with the growing need to support those in caregiving roles. The Jan & Josephine Castora Family Caregiver Relief Fund will be so important to so many.”
Eighty-three percent of care at home is provided by family members, friends or other unpaid caregivers. In addition, according to the Alzheimer’s Association:
- Nearly 75 percent of Alzheimer’s and dementia caregivers are somewhat or very concerned about maintaining their own health since becoming a caregiver.
- Over 1 in 3 dementia caregivers say their health has gotten worse due to their care responsibilities.
- Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high. As many as 40 percent of family caregivers of people with Alzheimer’s and other dementias suffer from depression.
The caregiver relief program is for caregivers who currently do not have paid help. To find out about eligibility requirements, go to
alz.org/cleveland/carerelief or call 216.206.8389.
Castora, who is the retired owner of a manufacturer’s rep firm, said he spent as much time as possible with his wife exercising her arms and legs to keep her as functional as long as possible. But he said he realized he needed to recharge his battery. Sometimes he would play golf, he said. Other times he would spend time with his buddies. “It’s hard to explain unless you’ve been there and done this,” Castora said. Even though caring for his wife was difficult, “It’s probably the most gratifying thing I have ever done. I made a commitment and I made the sacrifices…. I was willing to do it and I don’t regret a bit of it.”
That experience has made Castora a self-described advocate for caregivers. “I’m going to take my advocacy and my passion to governments to try to improve on the options available to caregivers.”
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.