A Caregiver's Struggle

 This picture was taken earlier this week when I took our daughter to an outdoor mall for her birthday. She was beaming - so excited to be spending time outside the house with mom who was poised and ready to spoil her for her 12th birthday.

And while my smile is genuine, there's a lot hiding behind it.

Earlier that morning, my husband woke up in extreme pain from a stomach issue that has recurringly plagued him for the last several years.

An hour before Evie and I left for our outing, Jeff looked at me and said, "We're probably going to have to go to the hospital this evening." I nodded silently, closed my eyes, and walked out of the room.

This is going to sound horrible, but I was pissed. Every other year since 2017, Jeff has been in the hospital on our daughter's birthday. And it looked like the cycle was going to continue.

I mentally began to prepare myself for the hours ahead: spend time at the mall with Evie, come home, immediately pack for the hospital (there's A LOT to pack for a ventilator dependent quadriplegic), maybe shower if there's time, wonder if the hospital is even going to let me in, should I call an ambulance or try to get Jeff into his chair and drive him there myself? Once they realize he can't pay, they'll have to let me in, right?

With all these questions swirling around inside my head, I set off for the mall with Evie while Jeff's parents stayed with him.

I snapped the picture above right when we got to the mall. We were walking in and were both so excited to spend time together shopping (even though I loathe extended amounts of shopping, it was worth it since I love my daughter). But behind my smile in this picture is all the worry of the morning. All the anticipation of what's to come. All the disappointment that my daughter's birthday might end with mom and dad in the hospital.

I texted Jeff every hour while I was away. At one point I got a text from him asking where some medication was. After sending instructions on where his dad could find it, they still couldn't locate it. So I asked, "Do you need me to come home?" I was met with a "No" answer and that they eventually found the medication. Still, I was rattled. In the middle of Old Navy, trying to find my daughter some new jeans that fit her properly, my worry for my husband was running over.

After several hours out with our daughter, plus a stop at the grocery store to pick up a cake, we made it home where I immediately switched into caregiver mode. Jeff informed me that since he didn't feel worse than earlier that morning, he didn't think we would be heading to the hospital. 

We were both able to breathe a little easier.

The next day he felt better.

The following day he felt worse.

And now it's today. He still feels like crap. And it's Friday, so I have to round out the week with homeschool as well as care for a quadriplegic who's in constant pain.

Evie and I made it till 10am before I had a breakdown. Summer is looming, and Evie's got a major case of senior-itis even though she's only in 6th grade. Combine that with a quad dad whose pain I absolutely cannot fix, and you've got one caregiving mom who blows her top.

Being needed is a wonderful feeling. Being torn between the complex medical needs of a quadriplegic spouse and the educational needs of a reluctant pre-teen daughter is not.

And at 10 am this morning I was SO. FUCKING. OVER. IT.

Maybe it's the time of year - as a first-time homeschooling mom, I've never been so excited for summer. Maybe it's 8 years of caring for my paralyzed husband. Maybe it's the pandemic.

I'm pretty sure it's all of it.

Today was not a good day. I cried off and on, which I rarely do. I teared up while making dinner, which I never do. I've been in a funk all damn day.

Jeff and I are awaiting our second shot of the vaccine, and we've been talking about how excited we are to finally be fully vaccinated. And as pro-vacciners, we are. But sometimes I wonder ... why? It's not like we're going to suddenly start going out once we're vaccinated. My husband hasn't gotten out of bed in a week because of his pain. For every five days of pain he endures, he gets one good day - sometimes only several hours - in return. 

What kind of life is that?

If you are among the people who are counting down the days until your favorite restaurant re-opens so that you can be there when it does, what you should be counting is your lucky stars. That means your normal is about to return.

But when my normal returns, my husband is still going to be paralyzed. And probably still in pain. My daughter is still going to need all the attention of her mom who can't adequately give it to her. And I'm still going to be stuck playing monkey-in-the-middle to both of them while marginally succeeding at maintaining my own sanity.

At this point, I have no desire to go out to a restaurant. I just want to sit out in our backyard and enjoy the evening breeze with both my husband and my daughter. I don't think this is too much to ask. So why is it so hard to achieve?

This blog post isn't happy. It doesn't have the life lesson or the positive wrap up I usually put on it. But it is 100% honest. And sometimes honesty is all I've got. 

I'm not looking for sympathy or encouragement or anything like that. I think I just needed to use my blog space to get some stuff out. To acknowledge a series of bad days. To be real and authentic about what it's like to be a spousal caregiver who is also a mother, a teacher, a problem solver, an individual.

I know things will get better. I'm sure we'll find something to laugh about tomorrow. 

And that will go a long way.

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?

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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