I'm Worried About Long-Term Care Policies, Aren't You?

It started with a shuffle of her feet and a shake in her hand while brushing her teeth; soon, my mother, aged 60, was diagnosed with Parkinson's disease.

The changes were too subtle for those of us who frequently saw her, but when she fell asleep at a celebration of her 75th birthday, my daughter and I realized how the disease had slowly affected her motor skills and facial expression.

Parkinson's was slowly erasing my mother from our lives, even as the debilitating neurological disease required our family to devote more time and attention to caring for her. We thought we were lucky that my parents took out long-term care (LTC) insurance policies with Mutual of Omaha 24 years ago, and have faithfully paid the premiums ever since.

It has not been easy. The premium on my father's policy began at $510 and my mother's at $549. Their rates routinely ratcheted up — and coverage became costlier as rising age made it more likely they would need long-term care. My father will pay $5,000 for both of them this quarter since her home health rider ended and she's now on the confined-care policy with a 20-day elimination period. They require you to restart paying the policy again for 90 days.

Their premium hikes in 2017-18 were particularly big: the payment for my mother, Ellen, rose by $2,088 while the payment for my father, Howard, climbed by $1,000. They could not afford a combined increase of $3,088 on their modest income, not when my mother also required prescription drugs and medical care for congestive heart failure.

My parents met on a blind date at Cornell in 1958 and married a year later. My father, Howard, was with the Peace Corps and served as Deputy Director of Peace Corps Thailand in the early 1970s; my mother, Ellen, embraced every challenge, from sharing her educational expertise to hosting embassy parties. Upon their return to the States, they became small-business owners by purchasing and running a recruitment franchise.

When my father was 79, he received a letter from Mutual of Omaha telling him that it was raising the rates for him and Ellen by $3,000. He told the company he could not afford the premiums, and the company offered him an alternative: reduce Ellen's lifetime (unlimited) coverage — which they had been paying for the prior two decades — to just five years of home health care and reduce his to three years. After that, Mutual of Omaha would pay only for "confined care," defined as assisted living or nursing home. Seeing no better solution, he agreed to a rider, or amendment, to their policies.

I knew nothing about this change until roughly eight months ago, when I learned that the five years of home care were almost up. My father did not ask us for help when the unaffordable premiums arrived, nor did he want the rider on Ellen's policy. He and his financial advisor had worked on a plan he hoped would help him afford LTC coverage throughout their lifetimes.

In June 2019, the day after my father's 80th birthday, my mother fell and had a severe brain bleed. With her Parkinson's disease progressing and her heart disease worsening, my parents invoked their LTC policy. According to LTC contracts, you qualify for home health care if you cannot perform three basic "activities of daily living" (ADLs), such as walking, eating, dressing, bathing, or using the toilet independently. Ellen's condition qualified her, and they began using home health aides.

When they triggered the policy, the premiums stopped coming, but the clock on the five-year rider started ticking. The professional home care eventually increased to 13.5 hours daily, with my father covering the overnight hours and paying all costs that exceeded Mutual of Omaha's daily payout of $340.

As my mother's physical and neurological problems progressed, she would see an imaginary mouse running up the wall or bend over to pick up some fictitious lint and fall. She would get angry and grab her purse to drive somewhere (we hid the keys), but behind the anger, she was frustrated by losing her independence. Sometimes, my dad would call me in a panic and ask if I could talk to my mom and calm her down so she wouldn't try to leave the apartment or refuse to take her medicines.

Ellen's condition deteriorated, but having a health aide at home helped to mitigate some of the stress and allowed her to remain with her husband of 64 years. My father worried about what would happen when the five-year rider ended. In January of this year, with the clock ticking down, my father wrote to Mutual of Omaha in his beautiful script, asking the company to make an exception to its LTC policy and extend my mother's home health care.

It was rejected.

We consulted lawyers, political representatives, insurance brokers and elder care experts who recommended that we file grievances with the State of Maryland, where my parents have lived since 2015. They said we must file with the State of Florida, where the original policy was issued. We've filed two different grievances with Florida, both of which were rejected.

Still unwilling to give up, my father re-read the LTC policy and identified a clause allowing for an alternate care plan, such as keeping my mother at home. The request required expert medical opinion, had to be mutually agreed upon and would not have additional costs.

We had her neurologist, cardiologist and general practitioner write letters confirming this was the best care plan for my mom to be safe and age with dignity. The daily rate of remaining with 1:1 care — that is, one health care provider per patient — was the same as that of the assisted living facility, which had a 9:1 ratio. It's easy to do the math.

Mutual of Omaha denied the request.

A clinical person never reviewed it because the company would not assign a care coordinator to work with us. My father called the care coordinator for home health, but she said our request was out of her jurisdiction, so she redirected us back to the supervisor.

Mutual of Omaha denied the request again.

The company was unwilling to engage us at every level we tried. For example, I found another phrase in the contract: "Only an officer of Ours can approve a change." I asked to speak with an officer.

Mutual of Omaha denied the request.

I posted messages on LinkedIn sharing our story and sent emails to CEO James Rutledge, senior vice presidents and board members; no one acknowledged or responded.

We seemed stuck in this circular twilight zone with a claim specialist and her supervisor, who went from considerate to obstinate.

On August 1st, we had to move my mom to an assisted living center because Mutual of Omaha terminated home health care support on July 27. The transition was heart-wrenching. The entire family rallied to make the studio space "home-like."

Mutual of Omaha pays $380 a day for the assisted living place, but my father thinks she is not safe on her own in that facility. So, despite having diabetes and neuropathy in his legs, my father tends to his wife as much as he can; I cover Tuesdays from 11 a.m. to 4 p.m., and he pays out of his own pocket for an aide to be with her from 8 to 10 a.m. and 7 to 9 p.m.

Our worst fears have been realized: without individual care when she's alone, she has fallen several times and had to wait, lying or sitting on the carpet, for someone to help her get up.

My father, now aged 85, has gone from night duty to all-the-time caregiving.

The assisted living center staff members are well-meaning but lack ongoing professional development, appropriate staffing levels, and fair compensation. My father's exasperation with the system — such as when no one cuts her food so she can eat or delivers her medicines on time — doesn't endear him to the caregivers either.

He cannot indefinitely keep up the additional hours of vigilance required to keep her safe. The money will run out, he'll be exhausted, and what happens to my dad's care after my mom passes?

I've watched the trials and tribulations at each stage my parents have entered in their life cycle over their 64-year marriage. I've learned more about the ins and outs of LTC policies and the lack of services or options for families to care for their aging family members who have been incapacitated. I am still unclear on what Medicare will or will not do.

I know that at 60, I am scared — not only for myself but also for my peers and their families. How do we work with this medical system, insurance companies, and public programs to care for our aging population? How can we avoid being a burden for our children and bankrupting them?

To be safe and age with dignity, we must think creatively, collaborate across disciplines, and form public-private partnerships to deliver solutions for all.

Melissa Reitkoppis a talent acquisition expert passionate about words who shares career insights through her blog. She served on various nonprofit boards and traded playing soccer for the pickleball court now that she’s an empty nester. Melissa and her husband move between D.C. and Asheville. Find her writing at Medium. Read More