My Mother's Caregiver: Long-Term Care Insurance

In our Resource Library, we pride ourselves on providing quality, timely and informative articles, publications and videos developed by our staff at Benjamin Rose Institute on Aging. Through our Guest Blogs, we are now welcoming caregivers to share their experiences, wisdom and insights from their unique caregiving journeys with our Resource Library readers. Please note that the views expressed in these blogs are those of the writer(s), and do not necessarily reflect the views of Benjamin Rose Institute on Aging.

Writer and photographer Mark A. Lee was born in Indianapolis, Indiana, the youngest of three children. In April 2014, Mark received Cicoa’s Caregiver of the Year award for acting as primary caregiver (alongside his mother) for his father, who had Alzheimer’s and emphysema in the last two years of his life. Since then, Mark assisted the Indiana Historical Society create a photo exhibit in 2015 based on thirty-years-worth of his work. “A Visual Journey: From AIDS to Marriage Equality” has subsequently been made into a traveling exhibit and is touring the state of Indiana. He was also one of five people interviewed for the award winning documentary "The Love of Care: Special report examines challenges, stresses, and triumphs for family caregivers" that can currently be seen on Youtube.com. Mark is currently caring for his mother and writing a book called “Raising Dad”, which chronicles his experiences with his father.

I spent the last six months fighting with my mother’s Long-term Care Insurance Company (LCI), and I’ve got the battle scars to prove it. I first became my mother’s full-time caregiver in March 2020. Her LCI would not pay me directly, but I was lucky enough to get a job with Senior Home Companions (SHC). Her LCI pays SHC, SHC takes out their cut (over half) and pays me the rest. I did not start caring for my mother for the money, but it certainly helps to have a steady income when it comes time to purchase groceries or gas for my car.

Once or twice a year, my mother’s LCI sends a nurse to our home to make sure she still qualifies for her benefits. August 2022 was one of those times. The trouble began a month later when we received a letter from her LCI stating she no longer qualified for benefits, effective immediately. In essence, she was doing “too well” as far as the insurance company was concerned, and she was no longer in need of someone to help care for her. In layman’s terms, it meant I no longer had a steady income. It also meant that if we wanted to keep her insurance for a later date, we had to start paying her premiums once again. If we did not, we risked losing ALL insurance benefits. At the time we received the letter, there was enough money in her benefits plan to pay for me to care for her for the next six years. After that, we are on our own.

We had sixty days to appeal their decision, and the battle scars were already starting to form. Technically, I could have gotten a job caring for someone else. But despite what the nurse may have thought, my mother was still in need of help: I could not leave her alone for hours at a time while I went to care for someone else. A letter of appeal was our only hope.

My mother has lymphedema, making it difficult and painful for her to walk. She also has a pump that has been installed inside of her and attached to her spine. This pump dispenses morphine throughout the day to help with the severe pain she feels in her lower back, hips and legs. About a month before I started to care for her, we had to sell her car. Her doctor no longer felt it was safe for her to drive, and neither did my siblings nor I. Since that time, I have acted as her chauffeur, driving her to her doctor’s appointments, Bible study and lunch with friends, and church. I also do all the cooking, cleaning, grocery shopping, laundry, pick up, and sorting and dispensing of her medications; I make sure she pays all her bills on time and in the correct amount, and wrap her legs to keep them from swelling. But by all means, let’s pretend she is more than capable of doing all these things on her own.

When Covid-19 first began, my mother went through a deep depression and did not get out of bed for over a week. She missed her friends, and like a lot of people in America, the longer the quarantine dragged on, the more depressed she became. It took every ounce of energy for me to get her to take her medications, and eventually, to get up and out of bed so she could start living her life once more. So, it was more than a little bit shocking to find out that two years later when a nurse stopped by our home, my mother was having a really “good” day; and more than a little disconcerting to watch her “show off” for the nurse for the next hour and a half as the nurse took diligent notes. (“Pain? What pain? I’m not in any pain.” Really? Try touching her legs, and then tell me she’s not in any pain when she screams bloody murder.)

I spent the first month after we received our letter, trying to get both her pain specialist (who installed the pump in her belly) and her internal medicine doctor to write a letter on her behalf. The pain specialist refused, and for whatever reason her internal medicine doctor was dragging his feet. When I reached the point where I could no longer wait for a letter from either one of them, I wrote a letter of appeal and faxed it in to her LCI.

Less than a week after I faxed in the letter, my mother fell and hit her head. I was in the dining room, getting ready to go out and run a few errands when I heard a blood curdling scream. I ran back to the office, only to find my mother lying face down on the floor in a pool of blood. The amount of blood petrified me. I told her to stay where she was, and I rushed to the bathroom to grab a towel in hopes of slowing down or stopping the bleeding. From what I could tell, it was coming from her forehead. I applied pressure with the towel, helped her sit up on the floor, and dialed 9-1-1. All I could think about the entire time was that if she fell five minutes later when I was out the door and running my errands – or, God forbid, I started working for someone else in order to make a few extra bucks – she would have bled out by the time I returned home. 

As we waited for the ambulance to arrive, I tried to figure out what happened. Any time my mother is home, she uses her walker to get around; and if we leave home, I put her in a wheelchair. For whatever reason, she decided to turn off our television without the use of her walker. The remote no longer turns the tv on or off, so you have to push a button behind the TV in order to turn it off. The TV is only a few feet away from where she was sitting, so she figured she could make it without the use of her walker. As she was reaching to push the button, she lost her balance. She reached for a chair, but it was an office chair on wheels and slipped out from under her, causing her to fall and hit her head on the corner of a desk. The sound of her scream is something I may never forget.

Once my mother was situated in the hospital, I called her LCI to inform them that she fell and was currently in the hospital. As is usually the case whenever I give them a call, there was a forty-minute wait before anyone was able to take my call. They offered a brief apology, and I asked if they received my letter of appeal. “We did receive it… it takes up to forty-five days for them to review what you said and get back with you.” I had to bite my tongue in order to keep from saying anything that would make that wait even longer than it already was. Due to some minor complications, and the hospital wanting to make sure Mom didn’t experience any brain bleed, she was in the hospital for four days before they sent her home.

During her stay, I managed to get her internal medicine doctor to write the letter I had been waiting for. I then wrote an updated letter, and upon the recommendation of a friend of mine, I sent my updated letter, along with the letter from her doctor, and a copy of the original letter to my mother’s LCI. I also sent copies of all three letters to the Attorney General, my Senator, my Congressperson, and the people in charge of insurance fraud for the state of Indiana. I am not saying this is the reason why, and it may work out differently for someone else, but within two weeks we received yet another letter stating they reviewed my letter of appeal and decided to go ahead and re-instate my mother’s benefits effective two weeks prior to the day I received the letter. 

That was the good news. The not so good news was that her benefits were only reinstated till the end of the year. They sent another nurse out to our home to re-evaluate my mother yet again the day after Christmas. This time, when my mother said everything was fine and she felt no pain, I corrected her. “Mom, you just told me this morning that it hurts to even LOOK at your legs.” “Well, yeah, it does hurt. My legs are in severe pain.” “Then instead of saying everything is fine, why don’t you tell the nurse how you actually feel?” “Well… I don’t like to complain…”

I love my mother. I even love the fact she doesn’t like to complain… to other people. She complains to me all the time. She tells me how much pain she’s in, and if I brush up against her leg by accident, she will let me know. The neighbors probably think I’m trying to kill her from how loudly she will scream. But I’m not a nurse. I am not the person who determines whether or not she is in need of someone to help care for her. If she wants to continue receiving the care that she needs, she has to learn how to let her guard down and actually be honest with the nurse who was sent to our home to evaluate her when they ask her questions. Meanwhile, it’s up to me to correct her when she gives them false information. 

The month that followed was a long one. A large portion of my time was spent on hold as I attempted to jump through whatever hoop they placed in front of me. Part of me couldn’t help but they think they were making the entire process as painful as possible as some sort of punishment for sending a copy of my letter of appeal to the people in charge of insurance fraud. At first, I tried to fight their hoops, questioning their every move. When it became painfully obvious that wasn’t the right move to make, I did everything I could to make sure they received the information they were asking for.

By the time the LCI decided to allow my mother to keep her benefits for another six months, she turned ninety years old.  There are no miracle cures for the things that ail her, and she’s definitely not getting any younger. And yet, the insurance company continues to look for any reason they can find to remove her from their program. These reasons, of course, have nothing to do with the person in need of benefits; and everything to do with corporate greed. I will continue to care for my mother regardless of if I am paid to do so or not. But I am also going to fight with every ounce of strength I have to make sure she continues to get the benefits she paid for.  Battle scars and all, I am going to continue to fight on behalf of my mother.