This as-told-to essay is based on a conversation with Kim Berling, 66, who lives in Albuquerque. Berling and her husband, 72, are caring for his 99-year-old mom, and both work to support her. This interview has been edited for length and clarity.
I have five adult children. I do financial advising and insurance sales. I’ve lived in New Mexico my whole life. My husband runs his own company as a technician for ATMs, going out to install or repair them.
My father died in 2018 from prostate cancer. My mother is 86 and lives on her own. I live close to her, as do the rest of my four siblings. She doesn’t have any health issues that require care at this point.
I made sure to invest in long-term care insurance. My husband has medical issues that he doesn’t qualify for. I will probably end up being his caretaker at some point.
My mother-in-law lives in the Dallas area. She comes from a family that has lived long lives. Recognizing this, she put a long-term care policy in place for herself in her late 70s. It’s a policy that remains in effect and provides a death benefit as long as premiums are paid until she dies, but it accrues no cash value. She’s still having to pay the premium at $405 a month.
Her health started declining at 90
At 90, she mistook the car brake pedal for the gas and ran into a tree. She wasn’t hurt, but her younger son, who lived next to her, decided she shouldn’t drive anymore. He wanted her to go into a nursing home, but we were opposed to that, so I took it upon myself to become more proactive in her care. I wanted someone to stay with her as a companion to help with driving and go to church with her, and interestingly enough, my brother-in-law’s ex-wife needed a job, so it worked out.
When she was 92, she fell off a ladder and broke her femur. After the surgery, she was in rehab, then she had to come home. We knew it would take an exceedingly long time before she would be able to get around on her own again. I got her medical power of attorney.
She couldn’t be on her own, so I started looking around for caregivers
We went through a string of them. It was very difficult to find people who would provide not only the level of care but also a good attitude. These older people have nowhere to go all day and need someone to communicate with them, but a lot of people don’t want to engage in conversation.
Though we had long-term care insurance, there was a 100-day waiting period during which we had to pay out of pocket before the insurance kicked in. Sometimes, I would drive to Texas to make sure everything was being properly taken care of. She was always very optimistic, so I always felt good about the situation.
I was very fortunate to find a network of caregivers who charge reasonable rates and are very compassionate and skilled at what they do. I’ve hired them for the last six years.
In total, her at-home care has cost about $6,600 a month, but it’s about $11,000 when everything is taken into account. Her long-term care, when it kicks in, pays about $4,200 a month, so that still leaves a deficit. She has a remaining benefit of $41,000, which means her insurance will be exhausted within the next year, at which point my husband and I will bear the full cost of her care. My husband and I cover that deficit, but it’s become increasingly difficult over time. That limits what we can do because we’re taking money that would normally go elsewhere and redirecting it here.
There are a lot of additional costs
Her income is about $3,000 a month. This may sound like a lot for somebody who’s retired, but it’s not. Between her Social Security, a small pension from being a teacher, and some money from an annuity from a life insurance policy when her husband died, it puts her over the threshold for Medicaid. If she were on Medicaid, they would pay about $1,500 a month for a family member to provide full-time care. It would be wonderful if there were something out there for the middle-class majority who make too much for Medicaid but don’t have enough money to cover long-term care.
She has to pay out of pocket for transportation to and from her doctors. There are a lot of additional costs you don’t think about, including gloves, bed pads, and diapers, which can cost several hundred dollars a month.
We’re grateful that these costs aren’t as high as what I often see. I hear of a lot of caregiving situations where people are shuffled off to state facilities, or children who have had to quit work to care for a parent.
At 99, she’s still cognitively there
It’s very difficult for her to get around. She has short-term memory loss, and she repeats herself and is very hard of hearing. I now have Zoom calls with the caregivers and her. I feel very comfortable leaving her for 30 days at a time. I go over once a month to make sure the medications are in order. It’s a nine-hour drive, and I usually spend a day or two there.
I know I have to be on top of things. In May, she developed a bad cough, and she had been turned over to a new primary care doctor who would not give her antibiotics until she could see her. There was no way for her to get there unless I went over, and this lingered for a few days. She developed pneumonia and was hospitalized for 10 days.
I’m working because we need the money. My husband would love to retire, but we cannot afford to retire. At some point in time, my mother-in-law will die, but that doesn’t really get us ahead. All that really does is bring us back to where we were before all of this started. My husband and I don’t currently have anything saved for our long-term care needs. We both will have to spend on long-term care, and I anticipate having a very long life.
I’m also working because I know that if the situation with the caregivers I’m using went sideways, I would have to go and take care of her. My husband has physical limitations. It would have to be done in a way that would also allow me to continue working.
We work because we have to, not because we want to.
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