Caregiving During COVID 

Kathy jokes that her husband Paul was smart to marry a younger woman. The two met at an upscale restaurant in Chicago, where they both grew up, when he offered to share his popcorn with her during happy hour. That simple moment of kindness led to a life of love and commitment. During their 36-year marriage, Paul and Kathy have raised three daughters; enjoyed successful careers in teaching and the railroad industry and logistics; lived in Minneapolis, Detroit, and Nashville; traveled many times throughout Europe; and enjoyed several winters in Florida after retiring.

Their life changed drastically in 2020 when Paul fell down a flight of 14 steps, in their condo in Florida. He had recently been diagnosed with Frontotemporal Dementia, but the fall was devastating. Over a six-week period, he was put on a ventilator, had a tracheotomy and feeding tube, and moved between hospitals and rehab facilities all the while unable to see his family due to the COVID lockdown. Kathy was working hard to get him home but wasn’t sure what his condition would be or where she would find the help she needed.

Since the fall, Paul no longer speaks and needs direction and supervision at all times. His care is physically demanding, and he suffers from a chronic cough due to his time on the ventilator.

“I called my church in the beginning, and all the help started there. They said we will find people, and they did. We learned that by being flexible, we could schedule students at the local nursing schools to provide a lot of the help I needed. Our three daughters, who all lived out of state at the time, were awesome too. One of the silver linings of COVID was that they were able to come home for extended periods of time and work from Nashville with their husbands.”

During this time our two grandchildren were born in Washington, DC.

“The young students are just a blast. They are so lively and fun with him. They do short shifts, they are upbeat, and they learn about the feeding tube.”

Kathy needs a lot of support to continue caring for him at home, but she wouldn’t have it any other way.

“I want to do it, that’s the number one thing. We have the best of a difficult scenario. He’s just a super pleasant person. He is 100% cooperative and able to respond to short verbal directions. I can still read him. I tell him a lot about everything; I tell him everything I’m doing. I am determined to keep him at home. I am younger, and we have the resources.”

In 2021, Kathy found additional home care support from Alive.

“This was a huge learning curve for me. I always thought hospice meant end-of-life care; I never knew there was this whole other part of it…they work along with the family in life, not just at the end of life.”

“The staff is excellent and professional. Alive’s pharmacist Dr. Nelson found a medication that is finally helping the cough he had ever since he was taken off the ventilator. Our nurse Tana worked with us in a very calm manner to create the best schedule for Paul. Justina, our Nurse’s Aide, is great. She’s a fireball and very strong. I need help in the mornings, and she comes three times a week, she is always pleasant and very hard working and responsible. Another great thing I didn’t know hospice did is provide all the supplies, medication, and equipment. They are fabulous at keeping us stocked with supplies and medications.”

Kathy keeps Paul active and moving with physical therapy and a lot of interaction and mental stimulation throughout the day.

“It’s very demanding physically, but I would never not do it. We have a system going; there are certain times a day I can sneak out for a little bit. My ritual is to get a Chai latte at Starbucks and read my book.”

Kathy also receives comfort from her Alive Chaplain. “Ray is also Catholic (like me), which is a plus. He is very wise, subtle, and gives a lot of insight and support in a very quiet manner. Amanda is our new social worker and she told me all that hospice can do for a family. She has recently set us up with a volunteer, who was so kind to Paul and really interacted with him.”

“I worry what would happen to Paul if no one got him up and moving each day. Each morning when I wake up and hear him stir, I say, ‘Thank you God for another day.’ I love him.”