5 Weird Realities When Your Sick Mom Is Your Full Time Job
Only two things in life are certain: death and family baggage (taxes only matter after you're arrested for evasion). What happens when you find yourself staring down the barrel of both at the same time?
Eight years ago, Elice Smith's mother suffered a massive stroke at the age of 56. There was no retirement plan -- who plans to be mentally and physically disabled at 60? If you believe the investment company commercials, your 60s are when you say screw the kids, hop in your RV, and go cruise on Cialis. Instead, Elice's mother, Terry, found herself waking up in a hospital bed after having lost her short-term memory, peripheral vision on the right side, her ability to read, and two-thirds of her mind.
So, if you're Elice -- 24 years old at the time and with a 3-year-old son and no college degree -- what do you do in that situation? Put mom in a nursing home? Hire somebody to look after her? Well, Elice made the choice lots of people do: to do the job herself with the meager reimbursement the government provides for that sort of thing. To say it was an eye-opening experience would be a ridiculous understatement ...
Abuse, Fraud, And Theft Are Everywhere
After spending the minimum amount of time required for a stroke patient in the hospital, Elice's mom was sent home, and Elice was faced with a tough decision. "I could let her go to a nursing home, or I could take care of her." Elice went with door #2, and the hospital just went along with it. Apparently, you don't need a degree certificate to care for a disabled loved one. Hell, you don't even need a CPR class. Gumption, moxie, and just the right amount of crazy are all it takes to become medically responsible for an entire human being.
"No training, no lessons, no resources to learn more," says Elice. "It was, 'Here's the 15 medications she needs to take and the times she needs to take them.'" And her situation isn't exactly unusual. "I have a friend [who] gave birth to a child with a very severe genetic anomaly. This genetic disorder is so rare that most babies who develop it miscarry ... the hospital sent them home with equipment, two days of training, and a list of medications. Imagine the terror. You do it because you don't trust anyone else to do it."
Which brings us to the crux of the situation: Roughly one-third of all nursing homes were cited for violations in 2001. Surveys show an astounding 44 percent of the residents say they have been abused, while a terrifying 95 percent say they have been subjected to or have witnessed neglect. This is why Elice put her entire life on hold to make sure her mother wouldn't be put in the same position. Keep in mind that compromising by bringing somebody into the home to take care of them isn't without risk, either -- you still wind up with plenty of tales of neglect, medication theft, and plain old fraud, via billing for work they didn't do.
Still, Elice doesn't judge anyone who may decide not to take this all on themselves. "[Y]ou choose the lesser of the evils. If you can't take a bloody nose from your parent or [having to] restrain your mother, [or] if you are not willing to look wiping your father's ass in the face, don't do it -- [even if] society says you have to. If you can't, it's OK. It doesn't say anything terrible about you ... there will be a day when they are lying in the hospital bed, and you will hate them. You will remember every slight, every broken promise, [and] you will stand there with someone's life in your hands and remember everything they've ever done to you and make the decision to take care for them or decide that you can't do this. And that's OK."
There Isn't Much Help From Outside
So, mom can no longer work, and her daughter is giving up her career to stay home and care for her. What kind of help can you expect in that situation? Turns out it's just enough to keep things terrifying. "My mother requires a hearing aid. The first hearing aid is free, but the dog chewed it up. The second one will cost $300 dollars. That's a third of her social security."
Elice's friend we mentioned earlier has spent thousands of dollars on special equipment for her daughter. But, even that becomes an expensive waiting game at times. "She is fed through a tube that connects to a button in her stomach. The tube burst over the weekend ... now, the medical supply company doesn't want to replace it until late January 'when she is due' ... using the same tube for six weeks when it's supposed to be changed weekly won't be safe; the tubes can't be cleaned thoroughly enough to keep mold out of it. Another parent on a support group Facebook page has the right size tubes and is willing to send them."
Yeah, these guys are left high and dry by their insurance companies and have no one to turn to but each other. It's either that or try to get yourself investigated by protective services. "My mother likes to walk barefoot because she's a country girl at heart. We had protective services called on us. We had to be watched for a month. After that, all of the resources we weren't offered beforehand were [offered to us]. She got speech therapy for about a month after that. But, when they realized she was being properly taken care of, those things slowly tapered off."
And, according to Elice, it really doesn't matter whether you get paid (a measly $9 an hour, by the way) or decide to do this work for free -- no one treats you like a hero for the sacrifice. "My best friend doesn't work. She can't. There is no day care that will take her child due to her special needs ... she is on food stamps and in [subsidized] housing, and she lives on the money that is provided to care for her children. She gets judged because she looks like a healthy woman who just doesn't have a job. If you keep your parent at home and you get paid for it, you are lazy ... if you put them in a nursing home because you can't take care of them, you are a bad child ... " There is no winning here.
And even the paycheck is surprisingly tenuous. "Because of the arrangement the state has, we are private contractors. We are legally not allowed to unionize. If my mother is hospitalized, I don't get unemployment. I have no protection ... she went to the hospital for three weeks, and for three weeks, I didn't work. I had no job to go to."
You Have To Learn To Deal With A Lot Of Bizarre Side Effects
In spite of the insane assumption that caring for your own parent makes you a bum, Elice has learned her way around more than a few medical emergencies. "I have a working knowledge of strokes and seizures. I can tell before someone is about to have a seizure. I'll never get used to it, but I've gotten adept at it. Sometimes, people's eyes get jittery up and down -- it's terrifying to see. That indicates that a seizure is happening. Neurological issues show up in the eyes first."
Yeah, remember when we said you don't need any training to do this sort of thing? Well, it turns out that a few months of this job will turn you into the world's foremost expert in your loved one's specific symptoms. "My mother speaks German. Sometimes she will speak German playfully, but she will lose her English when she has an episode. I have to try to get her to stop speaking German playfully so [that] I can tell when she just doesn't have those English words."
Of course, Elice has become adept at other less impressive but just as heroic aspects of the job as well. "I can guarantee you that shit never gets easier to clean up, regardless of how old a person is. When they have those warnings on commercials where a medication says it may cause explosive diarrhea, they are not kidding. Sometimes a doctor changes up her medication, [and] it makes for a lively night for all of us."
Oh, and in case you're wondering ...
This Can Destroy Whatever Relationship You Once Had
Elice doesn't just make sure her mom has medicine and hearing aids. She also has direct control over what happens to her mother if her mother isn't capable of making those decisions herself. Elice can put the kibosh on anything that seems reckless or ill-advised. "I don't exercise that power if I can help it in any capacity, because it's very much telling your mother 'no.' It's like she is a 64-year-old toddler -- she knows I'm still her daughter. She knows I shouldn't be ordering her around."
Just like an actual toddler, Elice's mother can be prone to outbursts when the pressure of her limitations becomes too much to bear. "It does make for a certain amount of tension. [What] makes it worse [is that] she knows she's my boss; she knows she can fire me. I have had various objects thrown at my skull. I have had my job threatened when I'm doing the right thing."
Doing the right thing includes things such as making sure her mother doesn't smoke too many cigarettes, take walks in the middle of summer alone, and watch the same bullshit documentary episode too many times. "She'll fixate on what shouldn't be a big deal because she can't handle big ones. She loves Ancient Aliens. She has Netflix, [and] she can binge on it all day long. If I say, 'Terry, you've seen this episode five times, let's watch something else,' she takes it as a personal insult."
Yes, "Terry." Elice calls her mom by her first name sometimes. She doesn't have a choice -- there are times when her mother doesn't remember their relationship. "When she's lucid, I call her mom. When she's gone, I call her Terry. At times it's as if my mother died August 7, 2007, and the woman I take care of is not my mother anymore. I have to make the mental compartmentalization. Otherwise, I can't do my job."
You Get An Intense Fear That The Cycle Will Repeat
Elice and Terry's unfortunate situation runs in the family, so to speak. From a young age, Elice started picking up on health cues and began desensitizing herself to the perils of poo while helping Terry care for her own mother. "I remember being 6 years old and eating rice cakes at Nana Gertie's house and watching my mother try to convince her to put some pants on."
If watching your parent face his or her mortality head-on isn't terrifying enough, watching it happen exactly the way you suspect it will happen to you is a goddamn Freudian hell, one Elice desperately wants to spare her son from. "I have nightmares of living my mother's life. I am raising my son to be able to afford the best care for me so that he doesn't have to do this."
See, just like 6-year-old Elice watching the physical and emotional deterioration of her grandmother and mother, Elice's son has been witness to some pretty harrowing stuff himself already. This is something Elice would like to minimize as much as possible, if not eliminate completely. "I worry that it has damaged my son. When he was 3, I went to the grocery store, and he [saw] my mother fall with a seizure -- she had bumped her head and fell down, [and] there was blood. Being a smart 3 year old, he called 911, and he's convinced he saved Nana's life. He's a hero. But, life and death and illness [don't] bother him. He's not squeamish. I also worry that that can turn into callousness if not checked -- that he could become desensitized."
So, despite the occasional violence, financial hardship, loss of freedom, blood, shit, tears, and mind-numbingly endless cable TV marathons, the thing that really frightens Elice is knowing that she could one day pass this all on to her own child. Elice is so afraid of this that she would rather her son be able to pay someone to do this, despite the risk of abuse she has learned so much about. "I have had bouts of depression while working this job. That's what 3 a.m. is for. [I worry that] I'm living my mother's life, and I'm going to have a stroke at 50, and I'll never get out of Kansas, and my son will [have to] take care of me. You deal with that."
For now, all Elice can do is hope her son ends up with better means than she did or ends up with a heart as big as hers. "I love my mom. I know that's a ridiculous thing to have to clarify. But, most people's moms don't chuck coffee cups at their kid's head. And most kids aren't mopping it up and cashing a paycheck for it. So, call me whatever you like -- just don't say I don't love my mom."
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