This as-told-to essay is based on a conversation with Tamara Johnson, 58, who lives in Leesburg, Virginia. Johnson quit her corporate leadership job to care for her husband. Johnson estimates her family has spent over $700,000 so far on her mother’s and husband’s care. This interview has been edited for length and clarity.
I was a senior executive in the federal government and the intelligence community, working there since 2007. My husband and I both worked in that area. In 2017, my mom became ill, so she was no longer able to live on her own in New Orleans. I ended up taking her into my home to provide care for her, seeking out more professional sources for support.
I tried to maintain as normal a routine as possible. That worked until she started to decline rapidly. I had some flexibility in my work schedule because my managers and supervisors understood the situation I was in. I was able to flex my work hours as long as it didn’t interfere with executing my goals.
Bills started adding up
My mom did not have long-term care insurance. Medicare covered some of her medical expenses, but not in-home care, and she had a small retirement income from the public school system. She had a home in New Orleans that needed maintenance, so there were expenses to cover. I was left to cover the financial gap, such as in-home care or hospitalization costs that weren’t covered by insurance. Relocation costs were also substantial.
I did use her income initially, but between my husband and me, we had pretty good salaries and were able to absorb the costs as long as there wasn’t a huge hit at one time. The bills added up over time, so we had to defer things we may have wanted to do, such as vacations and home improvements.
When she first came to live with us, there were memory lapses, but she was still functional. She could still ambulate on her own. She could provide some of her own self-care and grooming. It got to the point where she had a couple of episodes where she would wander and get confused. A few times, I got a call from my neighbor that my mom was lying out in their front yard. She got to the point where she wasn’t able to do daily living activities on her own, and eventually she became bedridden.
We never got to the point of assisted living. I looked into some facilities, but they were very expensive, and we couldn’t afford them. I was trying to find reliable in-home care, which was quite the adventure. Everything was out of pocket, and the care wasn’t always reliable. I had power of attorney for my mother, so there were decisions that I made toward the end of her life.
As her health got worse, I didn’t know from one day to the next what I might be facing. I would start my day trying to maintain my routine, but I didn’t know what I might find when I checked in on her in the morning. There were days when the home health aide was supposed to come to provide care, and they didn’t show up or call. There were days when I had all intentions of working, but I had to call out at the last minute. It became challenging when I had to manage staff, and I felt I was risking my chances for advancement.
Shortly before her death, she passed out, and doctors determined she had a pulmonary embolism. She was lucky to still be breathing, but she required a lot of care after that. She died in her sleep one night in March 2020.
My husband got sick after my mom died
After her death and some grieving, my life started to return to normal. I was able to fully commit to my career again, and I was promoted to principal deputy and took on more responsibilities. We thought we were back on track. The kids were in school, getting ready to wrap up their college careers. We thought retirement was in the window, and we could start living our lives for ourselves rather than being responsible for others.
My husband had been complaining about shortness of breath, and I’d been trying to get him to go see a doctor. He had a conference to attend, and because of his shortness of breath, he needed assistance to reach the gate. On the second day of the conference, he had a heart attack and had to have a triple bypass. I booked the first flight out to Portland to be with him. His surgery was successful, and they cleared him to fly back.
We were home for about four hours before he suffered a stroke. He was left with some right-sided weakness, and he started the process of recovery. He was doing pretty well, but he was trying to be very independent. He tried to use the bathroom unassisted one evening, and he fell and fractured his hip. He then suffered a second stroke.
Then, he developed a bone infection in his right foot. He had developed an ulcer on his right foot that wasn’t healing because he’s diabetic, and he had to have partial amputations on his right foot. They put him on pretty aggressive antibiotic therapy, which caused his kidneys to shut down and operate at 10 to 15% at one point.
It’s been taking two steps forward and three steps back. We’re still on that healing journey. He requires a lot of care with daily living activities until we can work to get him rehabilitated to a place where he can exert more independence.
His income was significantly reduced
He had to take a medical disability retirement, which significantly reduced his income. He went from making almost $200,000 a year to a little about $50,000 now. The costs were escalating, whether it was modifications to the home, mobility equipment, wound care, or amputation-related treatments. I ended up having to adjust my schedule, but ultimately, I had to step away from my role. Leadership changed and became less compassionate about making schedule adjustments, so I ended up resigning from my position by taking the deferred resignation program earlier this year to become a full-time caregiver.
I assist him with bathing, feeding, meal prep, and dressing. I’m also his care coordinator and case manager, managing all of his doctors’ and physical therapy appointments. My son is heading off to veterinary school, and my daughter lives in New York, so it’s mainly me.
Some days are better than others. I did hit a wall and had to seek counseling. I was one of those people who was taught that you don’t quit, you suck it up, and you keep going. I felt like I didn’t have the luxury of falling apart, because if I fell apart, then who would pick up the slack? I’m learning to treat myself with the same grace I extend to others.
He did not have long-term care insurance either, though I’ve had it since my 20s. I tell people that if they make these decisions earlier, it saves a lot of headaches on the backend. It’s important to know what will happen when your insurance runs out and what your financial standing is. It’s also good to speak with an elder law attorney or someone who deals with retirement planning, so you have a general sense of what to expect should you find yourself in a crisis. Hopefully, my kids won’t bear the same financial strain we are facing should something happen to me.
I am trying to figure out what’s next. I’m not sure what I can realistically do from a work perspective, given the demands that are on me in the household. I’m still very much in that process of transition and learning to find a rhythm that works for my family and me. Every day is a new opportunity, so I try to take what could be perceived as a challenge and turn it into an opportunity.
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