This as-told-to essay is based on a conversation with Carla Bacon, 69, who is caring for her 70-year-old husband while working a full-time job in Oklahoma. Bacon’s husband has slowly been recovering from a stroke, and they’ve had to go into medical debt to make ends meet. This interview has been edited for length and clarity.
I worked for much of my career as a public health director, and I was working on my doctorate until the pandemic hit.
I am also a stroke survivor. Four and a half years ago, I experienced a pontine hemorrhage while at work. Thankfully, the hospital was located across the street, and I was in the ER within 15 minutes. My recovery took several months, and I’m still improving. Our situation is that we have one stroke survivor caring for another.
My husband wanted to be home
My husband and I always had separate homes, but we would travel back and forth and stay with each other. I owned a home in Colorado Springs, where I recovered, but I moved back to Oklahoma. He was working on well water projects in Durango, Colorado.
My husband is 70, and he experienced a severe stroke two and a half years ago while staying at his cabin in Durango. He was life-flighted to a hospital with dim prospects of survival. I drove 14 hours nonstop to get to him in a mobility van.
We sold his cabin to pay for medical expenses, and I brought him home to live with me in Oklahoma.
He was initially in a skilled nursing 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 received therapy, which was absolutely great, but it wasn’t covered by insurance at all.
While he was there, I bought him an appropriate bed and whatever equipment we needed to care for him. He’s lived with me since June 2024.
We found an outpatient therapy facility a mile from our house, and insurance approved it. It’s helped him strengthen his upper body. He has pusher syndrome, where his body moves over to the one side that is weak, and he’s been going twice a week with a copay of a couple of hundred dollars a month.
I care for him on evenings and weekends
He’s bedbound and requires CNA care daily. The minute he could get an Advantage plan in 2025, we started with home health services. I care for him in the evenings and on weekends. Therapists for home health repeatedly marked him as not making progress, and many appeals got me nowhere.
I went back to work to help pay for much of what we both need to sustain us and to make sure our debts and credit cards are completely paid off. I had found work for the National Guard in Oklahoma City, but I lost my job during the DOGE cuts. I worked as an online tutor for students. I was out of work for a while, but I recently got hired again and am working in an office doing finance tasks.
Monday through Friday, I wake up at 5 a.m. I usually have a long list of things to take care of. I have to make sure the dogs are fed. I water the plants outside. I fix myself breakfast, shower, get dressed, and do other mini chores until 7. My husband sleeps in a separate part of the house because he has a special bed, so I wake him up and get his pills out for him. I change him, take his blood pressure, and help him go to the bathroom.
I’m at work by 8, come home at 4:30 p.m., and then check up on him. I’m able to take two hours off during the day to accompany him to therapy, and I put in the extra hours before or after work. Then starts the rest of the night, preparing dinner, cleaning up, and getting him ready for bed. I try to sleep by 9, and I keep my phone near me because he sometimes calls me in the middle of the night if he needs me.
I do it all as the full-time caregiver on Saturdays and Sundays. That’s when I do bike therapy with him. There is never a break in my schedule. There’s a lot I can’t do, such as lift him.
His Social Security doesn’t cover his supplies
We pay about $5,000 a 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 run about $500 a month. His Social Security doesn’t cover it.
He has a wheelchair that took over 250 days for his Medicare plan to reimburse him for, 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. Because he’s bedbound, he also has subscriptions to a dozen streaming services for his daily entertainment.
He is making progress, but it’s just taking longer than “normal” post-stroke survivors. He can stand up from his wheelchair, and we’re hoping that in six months, he can use a walker. I’m optimistic, though he, from day one, has said I should have just let him die. He does have an inkling of hope, and it’s slowly coming out, despite years of fighting our insurance and caregivers who didn’t see that he’s worth the time. I’m hoping we won’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 that I had studied healthcare systems and had the knowledge to actually fight those denials. I can’t even imagine what the average person goes through.
I keep reminding myself that I’m 69. What’s life going to look like over the next five years? My three children have been very supportive. They’ve made a pact to come and help me at least once every three months with some of the tasks I can’t handle, like mowing the lawn or trimming trees. My stroke has left me rather weak, and I can’t haul heavy stuff.
I operate on a hope and a prayer. If I make it to the five-year mark since my stroke in December, I’m going to count myself incredibly lucky. I’m looking forward to life and have the drive and willingness to keep pushing.
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