This piece originally was published April 26, 2015, on Healthline Contributors. That site no longer is live. Reprinted here with permission.
By David Heitz
Think your elderly parent won’t end up going completely broke before they die? Think again. It’s the reality facing a growing number of American families.
Maybe people finally will listen when Meryl Streep narrates “Caring for Mom & Dad” (#CaringForMomAndDad) airing May 7 on PBS. I just finished screening the documentary. Before sitting down to write this, I wiped away some tears – indeed, tears of affirmation – and took a long walk to work off some suppressed anger. Writing about these things never is easy.
You know what appears to be even harder? Hearing the blunt truth from someone like myself who is going (and hopefully growing) through it.
It’s really quite simple. Modern science has made it possible for people to live longer than ever before. While doctors can seemingly work miracles these days to keep a person’s body going, there isn’t much they can do for the mind when it starts to go.
And nobody is going to help you or your parent financially when your parent becomes unable to care for himself until he is broke. As in zero dollars. There is no help until the point your parent becomes penniless and qualifies for Medicaid.
Heaven forbid you find yourself in a situation where you’re not sure how to go about caring for your parent, but if it happens, I suggest not sharing too much on social media. People will give you advice that they pull right out of their behinds. Everyone’s an expert, and most people have no idea at all what they’re talking about. There are scams galore. There is no easy fix to this. You or your parent either pay for your parent’s care until they are totally broke, or you do it yourself along with the generous help of others. And good luck with that.
This is why you need to watch “Caring for Mom & Dad” May 7 on PBS. Check your local listings. If this trailer doesn’t grab your attention, nothing will – until you get that first bill from mom or dad’s facility. There also are wonderful tips and resources on the “Caring for Mom & Dad” site.
My Caregiving Story And the Path I Chose
I moved back to Illinois from Southern California in 2002. My brother already had placed my father (then 63) in a facility. Since I returned ravaged by crystal meth, it was easy to talk about what a mess David was and how the real reason he came home was to get help. From day one nobody really believed I came back to help my dad as well as myself. And that’s fine. At this point the proof is in the pudding.
When I came home, my brother took dad out of the facility and I assumed the caregiving role. Dad paid me $12 per day and also paid my $400 per month rent for many years. In exchange, I checked on him a few times a day and ran occasional errands. The role escalated through the years to me eventually being a live-in caregiver for one year.
I immediately was hired by a local newspaper when I moved back. It didn’t work out. It ended with a separation agreement. I cried at work a lot and they didn’t like it I guess.
I was unemployed for a couple of years, and during that time I spent quite a bit of time with my dad. I really grew to love the man I once despised. Dad seemed to improve after my first job ended and I began to spend more time with him. But my first go-round at freelancing wasn’t as lucrative as it is now, and after a few years, I yearned to go back to work.
So I went to work for another local newspaper a couple of years later. It was OK for maybe two or three years. But as my attention turned from dad, he got worse. He would call work confused. I would go to his apartment on my lunch hour and he wouldn’t make a whole lot of sense. I would go back to work really stressed out most days. I’d bolt to the tavern from work every day at 4 p.m. when the tavern opened.
To make a long story short, work got tired of hearing about how stressed out I was caring for dad. I got tired of what I felt was a lack of understanding on their part. Substance abuse problem and all, I quit in November 2011. (I am one year sober in two weeks.)
Reality Check: Caring for Dad Means No Career for You
“Caring for Mom & Dad” offers a glimpse into the lives of people like myself. People who tried to care for their parent so they could live independently as long as possible. Nobody wants to put their parent into a facility. The $4,000 to $8,000 per month is no fun for anyone either.
In the documentary, journalist Jane Gross explains how she and her brother pondered how mom had blown through $500,000 – her entire life savings – in four years. They didn’t even know their mom had $500,000 to spend. They joked she must have robbed a bank and they never knew about it.
The documentary also tells the story of two siblings who fought tooth and nail before finally seeking help. The sibling that controlled mom’s money would tell the one doing the hands-on caregiving (and by no means am I minimizing the role of managing finances) that she didn’t need any of her mom’s money for her own bills. He felt she needed to care for her mom out of a sense of duty.
But that sibling, like myself, wondered how she could support herself. What if this goes on forever? Will she not work during the prime of her career, during her prime earning years?
Many do make that sacrifice. I chose not to. Not only because I want a life, a future and to rebuild my career, but because I am not qualified to care for my dad. I don’t believe that any one person outside of a controlled facility would be in my dad’s case. It takes more than one person. You can learn about my dad’s frontotemporal dementia by clicking here.
Ignore the Misinformation on Social Media from Non-Experts
You will hear over and over, “You can get paid from the government to care for your parent!” Yes, if they are penniless and qualify for Medicaid. So don’t even listen to those people or any of the other bad advice that is out there, unless indeed your parent is totally broke. Most of our parents aren’t totally broke going into this. Don’t try to explain it to people who think they know everything. The know-it-alls have a rude awakening coming.
And don’t expect corporate America to be understanding while you care for mom or dad. Target is one exception. You can find out more about that in the movie.
While many managers in corporate America post delightful notes such as: “So and so is home caring for sick baby … we wish her all the best!” on online office schedules when staffers call in for that reason (although I realize it’s even rare these days that employees get cut a break for that), when you tell them you were late because you had to clean up dad’s poo?
“David, we need you here,” I was repeatedly told by both employers with a stern frown, even after lots and lots of “family first” lip service. That doesn’t last long and it’s not real.
There are ways this can be fixed. For example, in one southern Ohio county, voters approved a tax levy that funds services for the elderly so they can stay in their homes a little longer. But I’m skeptical. In my Illinois county, voters won’t even approve levies so that children can learn in modern schools. If they don’t care about their kids, I don’t think they’re going to care about the elderly.
Wake up, folks. You can watch this documentary or not. Meryl and I have both warned you of what’s coming.