This essay as told is based on a conversation with Tamara Johnson, 58, who lives in Leesburg, Virginia. Johnson resigned from his corporate leadership position to take care of your husband. Johnson estimates her family has spent more than $700,000 so far caring for her mother and her husband. This interview has been edited for length and clarity.

I was a senior executive in the federal government and intelligence community, working there since 2007. My husband and I worked in that area. In 2017, my mother became ill and could no longer live alone in New Orleans. I ended up taking her home to care for her and seeking out more professional sources of support.

I tried to keep a routine as normal as possible. That worked until it 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 make my work hours more flexible as long as it did not interfere with the execution of my objectives.

The bills started piling up

My mom didn’t have long-term care insurance. Medicare covered some of his medical expenses, but not home care, and he had a small retirement income from the public school system. He had a house in New Orleans that needed maintenance, so there were expenses to cover. They let me cover the financial gap, such as home care or hospitalization costs that were not covered by insurance. Relocation costs were also substantial.

I initially used his income, but between my husband and I we had pretty good salaries and could absorb the costs as long as there wasn’t a big hit at the same time. The bills piled up over time, so we had to postpone things we might have wanted to do, like vacations and home improvements.

When he first came to live with us, there were memory lapses, but he was still functional. She could still walk alone. She could take care of herself and fix herself. It got to the point where he had a couple of episodes where he wandered around and got confused. A few times I got a call from my neighbor saying my mom was lying in her front yard. It got to the point where she couldn’t perform activities of daily living on her own and eventually became bedridden.

We never got to the point of assisted living. I looked for some facilities, but they were very expensive and we couldn’t afford them. I was trying to find reliable home care, which was quite an adventure. Everything came out of my pocket and the care was not always reliable. I had power of attorney for my mother, so I made decisions towards the end of her life.

As his health worsened, I didn’t know from one day to the next what I might face. I started the day trying to stick to my routine, but I didn’t know what I might find when I visited her in the morning. There were days when the home health aide was supposed to come to provide care and did not show up or call. There were days when I had every intention of working, but I had to call at the last minute. It became a challenge having to manage staff and I felt like I was risking my chances of advancement.

Shortly before his death, he fainted and doctors determined he had a pulmonary embolism. He was lucky to be able to continue breathing, but after that he needed a lot of care. He died in his sleep one night in March 2020.

My husband got sick after my mom died.

After his death and some grieving, my life began to return to normal. I was able to fully recommit to my career, was promoted to assistant principal, and took on more responsibilities. We thought we were back to normal. The children were in school, preparing to finish their university careers. We thought that retirement was in sight and that we could start living our lives for ourselves instead of being responsible for others.

My husband had been complaining of difficulty breathing and I had been trying to get him to see a doctor. He had to attend a conference and, due to his difficulty breathing, needed help to get to the door. On the second day of the conference, he suffered a heart attack and had to undergo a triple bypass. I booked the first flight to Portland to be with him. His surgery was successful and he was allowed to fly back.

We were home for about four hours before he had a stroke. He was left with some weakness on his right side and the recovery process began. He was doing pretty well, but he was trying to be very independent. He tried to go to the bathroom without help one night, fell and broke his hip. He then suffered a second stroke.

Then, he developed a bone infection in his right foot. He had an ulcer on his right foot that would not heal because he is diabetic and his right foot had to be partially amputated. He was put on quite aggressive antibiotic therapy, which caused his kidneys to stop functioning and function at 10 to 15% at any given time.

He has been taking two steps forward and three steps back. We are still on that healing journey. He requires a lot of care with activities of daily living until we can work to rehabilitate him to a place where he can exercise more independence.

Their income was significantly reduced.

He had to retire due to medical disability, which significantly reduced his income. He went from making almost $200,000 a year to about $50,000 now. Costs were rising, whether it was home modifications, mobility equipment, wound care or amputation-related treatments. I ended up having to adjust my schedule, but in the end 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 accepting the deferred resignation program earlier this year to become a full-time caregiver.

I help him bathe him, feed him, prepare his meals and dress him. I am also your care coordinator and case manager, managing all of your medical and physical therapy appointments. My son is going to veterinary school and my daughter lives in New York, so it’s mostly me.

Some days are better than others. I hit a wall and had to seek counseling. I was one of those people who was taught that you should not give up, hold on and move on. I felt like I couldn’t afford to fall apart, because if I fell apart, who would take over? I am learning to treat myself with the same grace that I extend to others.

He also didn’t have long-term care insurance, although I have had it since I was 20 years old. I tell people that if they make these decisions earlier, they will save themselves a lot of headaches on the backend. It’s important to know what will happen when your insurance runs out and what your financial situation is. It’s also good to talk to an elder law attorney or someone who deals with retirement planning, so you have a general idea of ​​what to expect if you find yourself in a crisis. Hopefully, my kids won’t endure the same financial strain we face if something happens to me.

I’m trying to figure out what’s next. I’m not sure what I can realistically do from a work perspective, given the demands I have at home. I’m still in that transition process 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 might be perceived as a challenge and turn it into an opportunity.