“The PACE center has been absolutely fabulous, a godsend to me. I typically don’t call them a lot, but you have no idea the peace it brings me to know that I could call today and tell them something, and they respond. They are very responsive, very kind, very compassionate – exactly what you would want.”
Beth, 67, is a caregiver for her husband Craig, who enrolled in our Delaware program, Saint Francis LIFE, near the end of 2022. Craig attends the center three days a week, giving Beth some time off from caregiving.
Craig was diagnosed in 2013 with Parkinson’s Disease. Beth admitted that in hindsight, there were signs and symptoms she and family members overlooked, but now understands they fell under the Parkinson’s category.
“There were bumps along the road, but not big bumps. However, the pandemic is what brought a lot of things to head. All of a sudden, I am home all the time, and Craig did not at all understand what was happening, the shutting down of the world,” Beth said.
“He was so disoriented, and I was not able to do anything with him. Physically, his medications were pretty messed up, and he would get stuck and have trouble moving himself.”
She described the difficulty of her husband’s ‘pretty ugly’ psychotic break in May 2020, resulting in 2-3 trips to the emergency room.
Beth thought staying in a rehab facility and having Craig work on physical therapy might help him, which it did.
With the challenges of Zoom and telehealth, Craig still had trouble understanding what was going on during the pandemic. His neurologist suggested a geriatric psychiatric facility to adjust Craig’s medications in a safe environment. Beth said the rehab strengthened Craig, so he was able to move more safely, but he was not stable because of his meds.
“We thought we would have to put him in a facility for the rest of his life, and several people recommended it. I said ‘I can’t, I can’t do this. I gotta try to take care of him at home.’ So, I got his medications squared away, I had our first floor remodeled with a huge, handicap accessible bathroom and his bedroom down there,” Beth said of her next steps.
As this season of caregiving began, Beth tried to figure out all her resources. She normally would go to her best friend for support, but her best friend was battling cancer. As Beth tried to stay afloat, she lost her best friend in the middle of everything going on, in July 2020.
When Beth was outside one day, she started talking through masks across the fence to her next-door neighbor, whose mom had lived with her many years ago. She brought up PACE.
“WHAT is she talking about?” Beth thought, as she had never heard of the program. She looked up the program, got a little information about it and kind of let it go. Around the same time, Craig’s cousin was also fighting cancer. Beth tried to help take care of her. One day she was at their house, and a social worker who assisted her ‘cousin-in-law’ with getting on Medicaid referred Beth to a law firm for help.
Beth said the process of getting Medicaid was very involved but praised her law firm for their guidance. She was very stressed and trying to take care of her husband. The lawyer notified her that she had three options:
“Craig is very close to qualifying for Medicaid, but you have to choose one of three options: place Craig in a facility full-time, arrange for home care, or enroll him in a PACE program at Saint Francis LIFE.”
The law firm team had just attended an open house at Saint Francis LIFE center, and they were telling Beth about how wonderful the people are and how the facility was so beautiful. They encouraged her to take a tour, so she toured the facility with Craig and one of their kids.
Beth said on her initial contact the people were terrific and very patient with her as she was trying to keep it together.
“They (Saint Francis LIFE staff) were wonderful. They assured us that once we made the choice to enroll, if it didn’t work, they would support us in moving to another option,” Beth said.
They started the enrollment process for Craig to become a participant.
When Craig started there, he said he did not like it and felt like an old man.
“I think if you asked him now, he would still say that he does not like it. BUT, when I talk to people at the center, he has 2-3 people he hangs out with and tells jokes to everyone there. He loves to make people laugh,” Beth said.
Craig participates in the center activities like going out to restaurants and the movies and going to see the Wilmington Blue Rocks baseball games. Beth said the games are a great outing, as their family used to go when their kids were young, and they have great family memories with Blue Rock games. Craig also enjoys trivia games they play and the movement activities they plan.
“My life is better with Saint Francis LIFE, period. Even if I changed my mind and did not want my husband to go to the center anymore, I get the feeling that they’d continue their level of care if I wanted them to come to the home. Craig is not ready to go to a facility, and this a good balance between a full-time facility and me doing it all. They take such good care of my husband. They follow him so closely medically that nothing gets missed. They take care of all his routine appointments like the podiatrist, cardiologist, ophthalmologist, and dentist– they make those appointments, and if I’m not available to take him, they will. He also receives physical therapy every day when he is at the center. It’s fabulous. He is getting closer medical care than he would under any other available scenarios that were presented to us,” Beth shared of her experience.
Beth is a Registered Nurse, and with her knowledge and experience in healthcare, she can appreciate the care even more.
“I know we picked the best option for where he is in life for his mental and physical capabilities. They know my husband, and they notice if anything is different when they see him at the center. They can tell right away and do an assessment,” Beth said.
“I can put Craig on the bus in the morning with a driver and an aide who we aren’t familiar with, and they are laughing when they drop him off in the afternoon. He has made them laugh, and they are good friends already. The people are very kind and helpful,” Beth said.
Consider partnering with a PACE program as you navigate the challenges of caregiver. Find out if your aging loved one might qualify for Saint Francis LIFE or one of our other PACE programs here.