This as-told-to essay is based on a conversation with Kathy Mullen, 64, who quit her job at Nike to care for her mother. Mullen, who lives in Texas, said that the caregiving work hurt her financially and was physically taxing, as she is now on disability. This interview has been edited for length and clarity.
I gave up a wonderful career in a Fortune 500 company, good pay, great benefits, living a dream life, to move back to Texas to be my mom’s full-time caregiver for the last six years of her life. She suffered from Alzheimer’s. It destroyed me financially and physically. I would do it all again, but I would sure do it with my eyes open a lot bigger than they were.
I worked as a youth minister for the Catholic church for many years, settling in Portland, Oregon. I decided to get out of that line of work, and the biggest company around me was Nike, where I found a job. It was 10 minutes from my house. I was there for nearly a decade.
During that time, my dad’s physical health was failing, so I would fly in frequently to help him. He was mentally with it until the day he died in 2009.
I tried to bring my mother up to Oregon, but she was starting to forget her words. She was diagnosed with early-onset dementia in 2007, and I knew it was going to get worse. It got to the point where she couldn’t remember where she had parked her car. I’m the oldest, and the only girl, and it was expected of me to take care of the family, so I moved to North Texas in March 2010 to be with my mom. The deal was that if I moved down, I could have the house.
My Mom couldn’t afford long-term care
I was my mom’s long-term care. I sold all of my belongings to come care for her. I had looked for some nicer facilities for older seniors who needed help, and I found one near our house. As soon as we got into the parking lot, my mom started screaming like I’ve never heard anybody scream. She begged me not to put her in.
I left and took six months for myself. When I returned, I tried to work at least part-time, but as my mom’s condition worsened, I realized that I just had to go all in. I had money in a Nike retirement account that I transferred to an Edward Jones account. I thought that between that and my mom’s Social Security, we could be fine. But you go through that really fast with doctors’ visits and other things that come up.
I knew that her lifespan was shortened, but I wanted her to have some joy in her life, so I took her to California to see her best friend. Still, money was going fast. My parents had never heard of saving for long-term care. I looked into getting a policy, but I couldn’t afford it every month.
I did get some support, but it was hard
The Alzheimer’s Association helped me get eight hours a week off by bringing in a caregiver, and I did find an Alzheimer’s day care center, which she loved. It was every Friday, when I was supposed to do what I wanted, but my health started to fail, and Fridays became the days I had doctor’s appointments and errands.
I knew she was my parent, but she felt like a child needing my full and undivided attention. She would get up and wander around at night. I had locks on the doors, but I was worried she would fall, hit something, or step on glass. On my last birthday together, we started singing Happy Birthday, and she didn’t know my name.
I had a great medical team who cared for her until she died in February 2016. I took two months off about two weeks after she died. I didn’t really have close friends from before I moved away because they had gone on with their lives. But I remember sitting on the beach once, asking myself where do I want to take my life now? I hadn’t worked for years, and I was not really marketable.
It turns out I didn’t get the house to myself, and I had to split it with my older brother. I had to pack up the whole house by myself, and in 2018, I was diagnosed with fibromyalgia. Doctors don’t think I developed it because of helping my mom, but they thought the stress of taking care of her and dealing with a younger brother with a drug addiction made it worse.
My health deteriorated too
I did go back to work. It was in accounting, but I hated it. I was still mourning the person I became. Caring for my mother was my purpose, and I found myself at a different stage of life with no direction.
I started getting sick a lot more, which interfered with my work. I applied for disability because I wasn’t confident I could fulfill a commitment to a job.
Five years ago, I decided to move into a 55-and-older apartment complex, where I get a discount because I make so little money on my Social Security Disability. I earn about $25,000 annually. It is a blessing to have a two-bedroom apartment. Still, I went without medical insurance for six years because I couldn’t afford it. Now, I struggle every month to pay my bills and eat. Sometimes I feel like our government doesn’t care about seniors, and they make it easier to die than to live.
I won’t be able to afford long-term care, but I have some hope.
I have no spouse, no kids to check on me, and I can’t afford long-term care. I can barely afford to eat right and keep up with the cost of medications and doctor co-pays, and everything else that keeps going higher and higher in cost. I have gone through half of the two annuities I invested in. There’s a possibility I can get on Medicaid or downsize my home to a cheaper one-bedroom.
I want to go out and have drinks with friends. I want to travel like I used to. But it doesn’t end. Now, I’m taking care of an old dear friend of mine who is 92 and is in his last days. I’m the type of person to take care of everybody else except myself. I still volunteer at my church on good days. I handle US bookings for a world-renowned Irish tenor to give them more purpose, and I don’t get paid for it.
It was a rough winter for my health, and I’m not sure if I’ll ever improve. I know money will always be tight because my retirement savings won’t cut it. I do refuse to say that I’m old, though, and I make the best out of what I have. I’m hopeful I can turn some things around.
