Family Caregivers and the Legal Loophole

In Nevada, it is a felony to practice medicine without a license. It is illegal and punishable by fines and/or imprisonment to perform unlicensed nursing in our state.

And yet, this is what I do every day.

This issue was recently brought to my attention through a Facebook post written by a woman who I don't know personally, but who I respect deeply for her unyielding advocacy for her medically complex daughter. 

Dawn Oates' voice resonates loudly for all families who are forced to provide skilled nursing care for their loved ones, and who do so without pay, without recognition, and to the financial benefit of government programs. Her point in writing her Facebook post (at 1:30am no less - a time acknowledged by many family caregivers to be the only time of day such productivity is available) was to advocate for family caregivers to be included in Phase One for Covid vaccinations. But she also discusses a variety of other issues that directly affect the daily lives of family caregivers and the ones they provide care for.

A huge issue for Dawn's family is an inadequate supply of qualified nurses to provide care for the hours her daughter qualifies for (an issue that existed before Covid, but is now exacerbated by it).

The issue for my family is different, but related.

My husband Jeff is a C4, ventilator-dependent quadriplegic who requires 24/7 care. He can't move his arms. He can't breathe on his own. He needs assistance with every aspect of life. And yet he doesn't qualify for nursing care.

Most people (those who are not family caregivers) are so surprised to learn this. How in the world can someone with such a severe disability not qualify for any nursing care? It's because as an adult, the disability is not the first factor in determining whether someone qualifies for care. It's all about work history. Jeff worked for 20 years before he was injured. And because of that, he qualifies to receive Social Security Disability Insurance benefits. And the monthly amount he receives is just over the threshold for what is allowable by Medicaid, the only government program that provides nursing care. In essence, my husband makes "too much money" to qualify for nursing care - though of course that statement is ridiculous because his income in no where near adequate to survive on AND pay for necessary care, equipment, and supplies required for his medically complex situation.

Enter the family caregiver. 

The unpaid, untrained loved one who is forced to provide essential, highly skilled, life-saving duties. Day in day out, we slip right through a legal loophole and perform care that is otherwise denied to our loved ones. Care we would be imprisoned for is we tried to provide it to anyone else besides our family members.

Yes, my husband does receive some nursing care. He's on a program where a nurse comes out to our home every couple months to check his vitals, refill prescriptions, etc. And he is allotted some hours per year for a nurse to come out and do things like change his catheter.

But here's the catch. If we have a nurse come out to change his catheter and that catheter leaks (which it usually does during a cath change), and urine spills down the front of my husband's pelvic area soaking his skin and sheet and mattress, that same nurse is NOT going to spend the next hour cleaning him up, turning him to one side, ensuring his wound dressing is still intact, cleaning the mattress, changing the sheet, putting his limp body back into a semi-comfortable position, propping up his arms with pillows, and putting his soft boots on to prevent sores on his heels.

She's just not.

Whenever we have nurses visit, especially if it's a new nurse, they always ask the same questions: Who changes his catheter? Who changes his trach? Who manages his colostomy? Who does his wound care?

The answer is always the same: Me.

Because who the hell else is going to do it?

Of course I'm not actually a felon. I'm not posing as a healthcare professional nor am I attempting to pull the wool over anyone's eyes. Rather, I'm trying to enlighten. The issues family caregivers and their loved ones face are deep and vast. I think people on the outside see our family and think what a bummer it must be for my husband to need someone to help him do everything, and what a burden it must be for me to have to feed and dress him.

The real issues we face are so, so much more complex than that.

I could write forever on this subject, but the truth is, I have to go do my husband's wound care right now. Yes, we have a nurse that's coming out twice a week to check and dress the wound, but the the other five days it's my responsibility. So in about 30 minutes, I'll be looking into a tunneling wound, cleaning it, packing it, dressing it. Hoping it doesn't get infected. Hoping it's smaller the next time I check it because if it isn't, I won't know what to do. Because my training consisted of watching a nurse do this. One time. Then it was my turn.

But no matter how scary it is, how uncertain or hesitant I am, how inadequate I feel in providing these highly skilled, life-saving measures for my husband, I will always dive right in and do them. I will never not do them.

Because if I don't, who will?

****

Please check out and share Dawn Oates' Facebook post where she advocates passionately and articulately for family caregivers. 

https://www.facebook.com/dawnoates/posts/10221797360656560

Seven Years: Perspective Through Pandemic

July 27, 2020 marks seven years since Jeff's spinal cord injury.

I don't think I will ever be able to shake that feeling there on the beach, watching my husband be pulled limp and lifeless from the water. The terror of thinking he was dead, the relief when I heard him talking, the confusion as to why he couldn't move, and the heavy realization that I'd just witnessed my husband break his neck are feelings embedded deep within my being. Those feelings resurface now and then, but in truth, we've moved beyond them being a part of our daily life.

As with any life-changing incident, you go through stages as you begin to move forward. It's hard to classify what stage you're in when you're still living it, but I think we've finally moved from "we're still adjusting" to this life to "we've adjusted."

People often ask if this life gets easier as time goes by. I'm not sure if you can define it like that. There's certainly nothing "easy" about living with a spinal cord injury or taking care of someone who has one, especially when the injury is high up in the neck and results in no movement from the shoulders down and requires a ventilator for breathing. I think as time goes on, you definitely get more used to this life, and you get better at dealing with the demands and handling the urgent situations that crop up. But I don't think it ever gets easier.

When your life is changed by something like a spinal cord injury, it's almost like living in a parallel universe. Like living on one side of the glass where everything is different, everything is strange, everything is so confusing. And you're using every ounce of energy you have just to stay afloat. But on the other side of the glass, life continues as normal. You watch as your family and friends shed the shock of your injury and resume their regular lives. You see them celebrate milestones. You see pictures of them on vacation, and watch their kids grow. It's like watching what your life could have been like - should have been like - if this horrible thing hadn't happened. 

You adjust, like we have, and you move forward, but in a very different way from everyone else around you.

And that never really changes much year to year. 

But this year, something did change. Something happened that no one saw coming. Something that affected everyone.

I am, of course, referring to the COVID-19 pandemic. I feel like it came in slowly - we heard about this illness and watched as more and more people started getting sick. Then it hit with force and life on a global scale was turned upside down. 

And for the first time in seven years, I felt like that glass between our world and the one outside started to dissolve.

When the quarantine orders were given and lockdown began, I started to notice a shift. People were no longer able to do what they had been doing all along, and I was intrigued by the way they reacted to this. Some rolled with the punches, some dug in their heels stubbornly, others completely lost their minds.

I watched as people traded new routines for old ones, shifted to staying inside instead of going out. They had to ration essentials and plan ahead to when they would go shopping for more instead of going on a whim. The had to turn everything inward and learn how to make it through isolation. Many worked harder than ever, putting the needs of others before their own. Many lost their jobs and scrambled to make sense of their new realities.

For the first time, I watched as the collective public struggled with adversities similar to what Jeff, Evie, and I have experienced for the past seven years.

And I'm going to be very honest here, observing how some people have reacted to change has been really difficult for me to witness. 

I've watched videos of people fighting one another over a carton of toilet paper on the same day I've been told by the vendor who supplies Jeff's ventilator equipment that the tubing he uses to breathe is on backorder due to increased demand for people in hospitals infected with COVID-19.

I've seen people lamenting about how they can't breathe when they wear a mask while I remember back to when Jeff was newly injured and a nurse was cleaning his inner cannula. She removed the air, and I told her he couldn't breathe for more than a few seconds. She wasn't fast enough, and I watched as he gasped for air, his eyes rolled back into this head, and he passed out from not actually being able to pull air into his lungs. He woke up a few seconds later, crying, telling me he thought he had died.

I've watched people complain about being bored. About how they are at their wits end with spending so much goddam time with their family - the people they have CHOSEN to go through life with. About not being able to do what they want when they want. And all I can think is, "My god, these people wouldn't last a day in our life."

But for every person who has temper-tantrumed their way through this pandemic, there are others who have forged ahead and redefined what everyday life means. They've gained new skills. They've picked up old hobbies and found new ones. They've done something in their own life that has changed the lives of others. Even through adversity, they've continued moving forward. 

I want to note here that there is no right or wrong way to react to a pandemic or to a life-changing event for that matter. But I do believe some reactions keep you stuck where you are, and others propel you forward. Believe me, Jeff and I have experienced the entire range of reactions during our seven years of living with his paralysis. There are days where all we want to do is complain and cry and scream at how unfair life has turned out for us. Then there are other days where we absolutely dominate this life with a confidence that only exists because we've triumphed through adversity.

We're still in this midst of this pandemic, and I don't know how any of this will turn out. My heart aches for the people who have become ill and for those who have lost loved ones. I don't believe that everything happens for a reason. But I do believe that good things can still be possible even when bad things seem to have taken over. 

I think what it boils down to is attitude.

And that's what Jeff and I have tried to focus on the last seven years. Moving forward with a positive attitude. Sometimes that doesn't happen. But most of the time it does. And I think that's a big factor in how far we have come as individuals, as a couple, and as a family since his injury.

My hope is that going through something as challenging and life-changing as a pandemic will help make us - the collective us - more empathetic, less selfish, and more willing to face change with a positive mindset. Not everyone will be able to do that. (I am a firm believer that you can determine a lot about people by the way they handle change.) But if most of us can, then maybe we can be the wave that carries all of us forward.

Cheers to my husband for enduring the unimaginable for the last seven years. 

Cheers to our daughter for handling more through your growing years than you know. 

Cheers to me for keeping it all on track.

Let's keep moving forward. 

More Than a Papa

It's Father's Day here tomorrow, and I want to dedicate this post to the first man I ever loved: my Dad.

* * * * *

Neither Jeff nor I grew up with grandfathers in our lives. Jeff never knew his, and by the time I was five years old, both of mine were gone.

Evie is lucky to have four grandparents who love her - and she loves - very much. 

But there's one who holds a very special place in her heart and in our life.

When he pulls into the garage and opens the door to come into the house, he is met with a greeting from Evie that no one else receives. No matter where she is in the house, or what she's doing, she ceases all goings on, and screams, "PAPAAAAA!"

She knows that when Papa arrives, she's going to get some very special one-on-one time with him.

I happen to know all about this special one-on-one time. Because when I was Evie's age, I got that same special treatment. But back then he wasn't known as Papa. I simply called him Dad.

My dad has been there for us from day one of Jeff's injury. He was the first person I called after Jeff had been loaded into the ambulance. He met us at the hospital, and he drove Evie back to our house that night while I dealt with the shock and confusion following Jeff's accident.

A couple years later, when my family moved to Las Vegas to be closer to Jeff's parents, my dad followed suit. And over the last few years, I've not only grown closer to my father, I've also watched him develop special relationships with both Jeff and Evie.

He's not just a father-in-law to Jeff, he's also a great friend. And that means so much more than I can express - to both me and to Jeff. While Jeff still has his buddies in his life, he mainly interacts with them online. So face-to-face interaction is rare. That's where my Dad comes in. They watch sports together, and love talking about football, basketball, and golf. If there's days where Jeff can't get out of bed, my Dad pulls a chair into the bedroom so they can watch TV together. A couple years ago, Jeff got my dad hooked on Game of Thrones, and while Evie was at school, and I was busy doing work around the house, they binge watched the entire series! They talk about everything, even things you aren't supposed to talk about like politics and religion. Their views might not align exactly, but they respect one another and can have a level-headed discussion. My Dad's ability to intelligently engage with Jeff on a variety of topics is invaluable. And it's something Jeff needs. It's the type of interaction that fills Jeff's tank and keeps him looking forward to another day. 

And then there's his relationship with Evie. They are two peas in a pod, and have made some lasting memories together over the past few years. On the issue of full transparency, Evie bosses him around something fierce. But that's what I love about my Dad. He lets Evie decide what they do. He lets her call the shots for once. He does things with HER in mind. Some days they swim. Some days they bike ride. Some days they paint. Some days they do all of these, and more! And on those days, my poor Dad is worn out by the end of the day. And so is Evie. But on those days my and Jeff's hearts are so full.

Because on days where my Dad spends a lot of time with Evie, those are the days Jeff and I can't spend time with her. Those are the days when Jeff needs me by his side - either because I have a lot of maintenance work to do on him, or because he needs extra care, like this wound that has been pestering us of late. There is nothing - and I mean nothing better - than when Jeff and I are stuck inside, forced by necessity to put his SCI first, and we can hear Papa and Evie laughing in the backyard together. There's no better feeling knowing that your child is happy. And on the hard days, Papa makes that possible for us.

About a week ago, I was putting Jeff back to bed. We'd had a great evening with my Dad. He'd played with Evie earlier in the day, then we had dinner together, and watched a movie as a family. And as I was putting the sling around Jeff to transfer him into bed, I noticed tears welling up in his eyes. I grabbed the tissue and wiped. He looked up at me with so much emotion on his face and in his voice. "I'm so thankful for your Dad," he told me quietly. "I mean, you're my hands and feet in a way that you keep me alive every day. But he's my hands and feet in a different way. He plays with Evie in ways I can't anymore. And I'm so grateful for that."

My Dad has often told me that being my father is one of his life's greatest accomplishments. Learning from him and applying characteristics he instilled in me like responsibility, independence, and compassion are among mine, especially in recent years. We always try to tell my Dad how much we love him and how much we appreciate his company and his help. But I don't know if he realizes he's so much more than that. 

More than a Dad.

More than a Father-in-Law.

More than a Papa.

We love you so much, Dad.

xoxo

I'm a Caregiver and a Wife and a Mother - Here's What I Want

I wish I could say that the new year has started off with a bang - that we're all feeling good and heading into this new decade with smiles on our faces.

But writing that would be a lie.

This month has been hard. This last week has been incredibly trying. Maybe it has something to do with the heaviness felt, especially here in the US, since the tragic helicopter crash. When things like that happen, life for everyone else is supposed to take on a new perspective. Make us feel grateful for the things we have.

And I am. My god, I am truly and deeply grateful for my husband and my daughter.

But even with tragedy looming large, that doesn't mean my family's difficulties are any less. I wish I could sweep our stresses under the rug. I wish I could take off my husband's spinal cord injury like an old worn out suit, put it in the trash, and watch it be whisked away every Monday morning.

But stresses like that, caregiver stresses in particular for me - cannot be discarded so easily.

I've been so angry lately - my emotions so close to the surface. Quick to cry, quick to let out a defeated sigh - with even the smallest provocation.

Jeff spent a week in the hospital in mid-January, and even though he's home now, he still isn't feeling great. He came home with a wound on his rear end from his hospital stay, and it took us the last two weeks to get it to the point where it's almost healed. That's a lot of extra patience for him (he's only got out of bed twice in the last fourteen days) and a lot of extra diligence for me (daily wound care, propping of legs, checking for pressure relief, etc.).

In addition, I've finally admitted that I'm drowning in the administrative side of Jeff's care. And things like self-care, quality time with our daughter, and sleep have all gotten lost in the goulash of life.

Last night I had a breakdown. As a caregiver, as a wife, as a mother. I cried in front of Jeff and Evie. I told them bluntly that I need more from them.

I absolutely hate turning the spotlight on myself. I am acutely aware that I am not the only person in this family suffering. We are all trudging down our life's path, each saddled with more than we can handle.

But one of my jobs is to keep us all on track. And one of the ways I do that is by asking my husband and my daughter every single day, multiple times a day, "What do you need?"

Last night I stood in front of the two people I love the most and told them I feel like a broken record. I am constantly asking them "What do you want? What do you need?" And If I'm not actively asking the question, I'm anticipating what their answers might be, and I'm acting on it.

Then I told them something else. My voice was shaking and my tears were held back only because I was angry too: "No one ever asks me that question."

I sat there in silence for a moment, then said out loud, but really more to myself, "Honestly, I don't even know how I would answer it."

An hour later we all went to bed. But I spent several hours that night thinking about what my answer to that question might be. What do I need?

I immediately thought of the essay "I Want a Wife" by Judy Brady. I first read this essay in college. And my 19-year-old self naively thought upon reading the title that the author was making a statement about her sexual preference. She wasn't. She was making a statement about feminism, particularly listing all of the things a traditional housewife does to keep things running smoothly. The message goes much deeper, but this isn't the post to expand on that. The reason I thought of the essay is that the thing this woman wants isn't too far off from the things that I want.

So as a caregiver, who also happens to be a spouse and a parent, here are the top five things I want:

- I want to stop time so I can catch up on everything that is half done, that's come undone, that hasn't even been started yet. Time is the nemesis of a caregiver, the one who has to be the arms and legs of not only herself, but of another person as well, so being able to manipulate time would be at the top of my list.

- I want five hours of uninterrupted sleep. Just five. I don't want to be greedy and ask for eight. That would probably be too much anyway. I can't imagine what five straight hours of sleep would do for my physical and mental well being.

- I want a clone - an actual physical copy of myself that could do the things I don't have time for. She could schedule and attend my overdue mammogram appointment. Or earlier this month when I was in the hospital with Jeff, she could have kept the follow-up appointment I had to cancel with a cardiologist to check on the status of the fluid around my heart that was discovered on an ultrasound a few months back. She could deal with the stress of this kind of important self-care appointment, then she could come back home and tell me that everything is okay, all while I spend the afternoon tending to my husband and getting him out of bed.

- I want someone to keep me on track. Someone who knows every medication I take, when I take it, and who gives it to me at the right time. I want someone who asks me if my phone is charged before I leave the house. I want someone to remind me to wash my hair. I want someone to tell me when the toilet is going to break and when I'm going to need to schedule in extra time to fix it. I want someone to tell me I need a nap because I've been extra grumpy and could use a little lie down.

- I want someone who worries about me as much as I worry about my husband and my daughter. I want someone who can't sleep at night because they're not sure they're doing everything they can to make sure I am happy and safe. I want someone who puts me first and themselves last because they know they are strong enough to be the engine that pushes me forward.

As you can see, my list is rather preposterous because none of these things exist in my current life. It might be outlandish, but it's true. Because the things caregivers need often aren't tangible. Yes, I can always use help with things around the house, and errands, and dinners, etc. But what I really, truly need is listed in detail above.

Right now though, I would settle for things to go back to the way they used to be. I'm not even talking pre-injury. Jeff and I have fully accepted that his SCI is here to stay. What we'd really like is for things to just get back to him being paralyzed and stable.

This morning as I was getting ready to take Evie to the bus stop, she came up to me and quietly said, "Is there anything you need right now?" I looked into her eyes and smiled. She was listening, and she was trying. I told her, "The only thing I need right now is a hug."

And it helped.

Here's hoping that 2020 starts looking up.