When Nancy began caring for her mother and father, it wasn’t a new role. Her mother had been a nurse, Nancy raised and cared for her own children, and Nancy had also been a nurse for 18 years.

Nancy and her siblings found themselves in a situation many families experience. As they grew up, they moved across the country for jobs and life. When they all returned to their native New York for a family wedding, they noticed their parents were moving a little more slowly, and the decision was made that mom and dad would move to Florida to be closer to Nancy.

This decision was a good one – Nancy’s father began developing swelling in his legs toward the end of summer, referred to medically as lymphedema, that wouldn’t go away over a period of a few months, and Nancy become more concerned.

Image of Nancy with her father and family, including grandchildren, sitting outside on a patio

Nancy took her father to the doctor in October and they were sent to the emergency department immediately. There they were given her father’s diagnosis – colon cancer.

“The doctor told him it was pretty extensive from what he could see at the time,” Nancy said. “He gave him two options: he could go home and enjoy what life he had left or he could run more tests and see what could be done. My dad chose to run more tests and see what options he had.”

After five days in the hospital, her father’s care team developed a plan to send him home with home health care through Kindred, and to help ease the pain in his legs.

“It was difficult to get him in and out of the care. It was a two-person job at that point,” Nancy said. “So it was nice to be able to get physical therapy at home. He was getting a little more forgetful, so having someone come during an appointment he could get used to it. It became his regular day, and it was always the same people.”

Nancy said the family knew they would eventually use hospice care, but they wanted to pursue radiation treatments first to shrink the blockage and decrease her dad’s risk for complications. The radiation treatment began around Thanksgiving.

Nancy’s father had specific bucket list things he wanted to accomplish, and those stayed his focus through his journey. He wanted to make it through the Thanksgiving and Christmas holidays to meet great grandchildren he hadn’t met before. He wanted to make sure his wife would be taken care of. He made all of his wishes known.

During the Thanksgiving holidays, Nancy’s father’s health began to decline. They started hospice care the following Monday.

“Getting him in the car was next to impossible. It was really difficult,” Nancy said. “[The hospice nurse] asked us if there was anything she could do, and I said, ‘If we can find a way to get him to his treatment today that would be great.’ It’s a 15-second treatment, but it takes 40 minutes to get him in and out of the car. Within a five-minute phone call, she arranged for an ambulance ride there and back, and it was such a relief.”

Nancy’s father continued to fight his cancer throughout the Christmas holidays. In January, he had a fall, and, because Nancy is a nurse, she was able to assess his fall. She called the hospice care team and asked what she should do, and they were able to walk her through the process from start to finish.

“Whatever the question, whatever the time, they answered the question,” Nancy said. “It was very helpful. You can’t ask for more than that.”

Nancy’s background as a nurse was helpful in caring for her father, but also for understanding the care he was receiving from his hospice team. She said she noticed their cleanliness, that each time they touched something, before they touched her dad they would wash their hands.

“You go into the nursing field, but not everybody is caring, you know?” Nancy said. “Not one single person who came in didn’t care. They cared for my dad, but they also cared for my mom and that matters. They made sure she sat down.”

Nancy reflected on a time when her father needed continuous care from the hospice team, and her mother wouldn’t be able to sleep in the same room. They set up a place for her to sleep upstairs, but there was one problem – her pet dog who was older was unable to make it up the stairs – and she needed him to sleep. The hospice nurse carried the dog upstairs for her mother so she could get some rest.

“That’s not in her job description, but she cared,” Nancy said. “It’s not written in a nursing book, but that stuff matters.”

One evening, while Nancy was the nurse on call for her father, he passed peacefully at home near his wife and his daughter  surrounded by love.

“My dad is a very quiet man,” Nancy said. “I guess everybody thinks their dad is the best guy. But he was very passionate about what he did. He was quiet, encouraging, gentle.”

Nancy said she appreciated the bereavement support from the nurses reaching out to her and her mother after her father passed, even on their days off.

“When you have an illness that is long like this, you grieve over time,” Nancy said. “You’ve kind of prepared for it. I think the bereavement process wasn’t just all at one time. He had time to say goodbye to his family and hit his bucket list.”

Nancy said she is both exhausted and at peace.

“It’s exhausting even with a lot of help. You don’t realize, but you’re taking care of not only him, but your mother too,” Nancy said. “It was helpful to have hospice, because that’s just one less thing. But definitely near the end it was a blessing that he wasn’t in pain and that was a good thing.”

Nancy’s family took care of her while she was caring for her father - it’s important to have family as a support system. She said she couldn’t have done it without them.

“Sometimes it’s just overwhelming, and you have to do one next thing,” Nancy said on advice for other family caregivers. “What is just the next thing? Because there are a lot of things, so you have to focus on what’s the next one, because if you look at everything it can be overwhelming.”

Nancy said that with hospice care it was the small things that mattered in the care her father, her mother and her family received.

Nancy’s father lived a full life of 85 years with children, grandchildren and great grandchildren. He is remembered for his love of art and painting, photography equipment, and computers.

“He had more girls than boys, so we would bake him things. He would eat anything we’d bake him, no matter how horrid,” Nancy said. “I made some dessert that was horrible, and everybody else was not about to eat it. He choked it down and asked for seconds. I’ll always remember that. It was sweet.”

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