This as told essay is based on a conversation with Carla Bacon, 69, who cares for her 70-year-old husband while working in a business. full-time job in Oklahoma. Bacon’s husband is slowly recovering from a stroke, and they had to fill in medical debt to make ends meet. This interview has been edited for length and clarity.
I spent much of my career as a public health director, and I was working on my PhD until the pandemic hit.
I am also a stroke survivor. Four and a half years ago I suffered a pontine hemorrhage while at work. Luckily the hospital was right across the street and I was in the ER within 15 minutes. My recovery took several months and I am still making progress. Our situation is that we have one stroke survivor caring for someone else.
My husband wanted to be home
My husband and I always had separate houses, but we traveled back and forth and stayed together. I had a house in Colorado Springs where I recovered, but I moved back to Oklahoma. He worked on well water projects in Durango, Colorado.
My husband is 70 and he suffered a severe stroke two and a half years ago while staying at his cabin in Durango. He was flown to a hospital for life with poor prospects for survival. I drove non-stop for 14 hours to reach him in a mobility van.
We sold his cabin to pay for it medical costsand I brought him home to live with me in Oklahoma.
He was initially in one skilled nurse facility in Enid when I brought him here, but the cost became too much after 21 days, and he hated it there. He just wanted to be home. He got therapy, which was absolutely wonderful, but it wasn’t covered by insurance at all.
While he was there, I bought him a suitable bed and all the supplies we needed to care for him. He has been living with me since June 2024.
We found an outpatient therapy facility a mile from our home, and the insurance approved it. It has helped him strengthen his upper body. He has pusher syndrome, where his body moves to one side that is weak, and he goes twice a week with a co-pay of a few hundred dollars a month.
I take care of him in the evenings and on weekends
He is bedridden and required CNA care daily. As soon as he gets a Benefit plan We started home care in 2025. I take care of him in the evenings and on weekends. Home care therapists repeatedly noted that he was not making progress, and many calls got me nowhere.
I went back to work to help pay for much of what we both need to support us and pay off our debts credit cards are paid off in full. I had found work for the National Guard in Oklahoma City, but lost my job during the war DOGE cuts. I worked as an online tutor for students. I was out of work for a while, but I recently got hired back and work in an office where I do financial tasks.
Carla Bacon’s husband slowly starts walking again. Carla Bacon
From Monday to Friday I wake up at 5 am. I usually have a long list of things I need to take care of. I have to make sure the dogs are fed. I water the plants outside. I take care of my breakfast, shower, get dressed and do other small chores until seven o’clock. My husband sleeps in a separate part of the house because he has a special bed, so I wake him up and get him his pills. I change him up, measure his blood pressure and help him go to the toilet.
I get to work at 8pm, get home at 4:30pm and check on him then. I can take two hours off during the day to accompany him to therapy, and I spend the extra hours before or after work. Then the rest of the night begins, preparing dinner, cleaning up and getting him ready for bed. I try to sleep at nine and keep my phone close to me because sometimes he calls me in the middle of the night when he needs me.
I do it all as the full-time caregiver on Saturday and Sunday. Then I do bicycle therapy with him. There is never a break in my schedule. There’s a lot I can’t do, like pick him up.
His social security doesn’t cover his supplies
We pay about $5,000 per month for a CNA, Monday through Friday. Medical supplies include diapers and a diaper pail with liners, which are changed daily; wipes; gloves; bedsore pads; creams, such as bedsore cream; hydrocortisone to help with itching; and Tea Tree soap to wash his back. Those supplies cost about $500 a month. Are Social security doesn’t cover it.
He has a wheelchair that took him more than 250 days to complete Medicare plan to reimburse him, a mobility van, a Hoyer lift, a therapy bike, a special shower and bathroom chair, hand weights and various therapy items to help with his hand and foot mobility. Since he is bedridden, he also has subscriptions to a dozen streaming services for his daily entertainment.
He’s making progress, but it’s just taking longer than “normal” stroke survivors. He can get up from his wheelchair and we hope that in six months he will be able to use a walker. I’m optimistic, even though he said from day one that I should have just let him die. He has a glimmer of hope, and it’s slowly coming to fruition, despite years of fighting our insurance companies and health care providers who didn’t see his worth. I hope we don’t need a CNA by the end of the year.
It’s not cheap, and Medicare just doesn’t cut the mustard. Neither do any of the Medicare Advantage plans. Denial is the norm. I’m lucky I studied healthcare systems and had the knowledge to actually combat those denials. I can’t even imagine what the average person goes through.
I keep reminding myself that I’m 69. What will life be like in the next five years? My three children have supported me enormously. They have agreed to come and help me at least once every three months with tasks that I cannot handle, such as mowing the lawn or pruning trees. My stroke has left me quite weak, and I cannot carry heavy items.
I operate on a basis of hope and prayer. If I make it to five years since my stroke in December, I will consider myself incredibly lucky. I look forward to life and have the drive and willingness to keep pushing.
