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Lack of Resources, Healthcare, Red Tape and Lives turned upside down—My Very Long and Convoluted American Healthcare story

  
Not long after my husband (whom I will refer to as Mr. Lucky) and I  started this website, our lives were turned upside down by a freak accident that left Mr. Lucky a quadriplegic. We have been unable to fight anything other than for his life Since.

This is going to be a long story, but I would appreciate you taking the time to read it, as I seriously doubt that our story is unique in any way, but rather a rather complete tour of our healthcare system as seen by one person who has had to navigate it for the last 5 months.

A little background, Mr. Lucky has been retired from the military for about 15 years. After trying to use the VA healthcare system back in 2007, he opted to use Tricare insurance that is offered to retired veterans and their families because our VA hospital is very small and there is always a long wait for services.

I am fully employed and have insurance through my employer.

This is important because if you are a veteran using Tricare Standard, you don’t pay an insurance premium, but you still have to pay a $1000 per year out of pocket costs and 80% of healthcare costs. So, by purchasing my employer’s health insurance plan, Mr. Lucky and I were double-covered and our out of pocket costs were minimal (notice I am using past-tense on that). By doing this, we figured we were well covered should anything catastrophic ever happen. To add a cherry to the top of the insurance sundae, I bought an Aflac accident policy several years ago that I still carried.
I mention this because I always hear conservatives talk about people who need Medicaid as being lazy and irresponsible. Mr. Lucky and I are neither. We are both veterans and have worked our whole lives. So point your broad brush elsewhere, haters. We did everything we could to NOT be in the position of needing help from anyone else.
So, that’s the background, now on to the story…

Day One—Initial Shock

In late February, 2017, at approximately 2:15 am, I was sound asleep when I heard a loud “BANG”. Now, anyone who has cats knows that this is not a rare occurrence. So, I did what any very tired menopausal woman would do, I turned over and went back to sleep. A few minutes later, I heard my name being called by a muffled voice. After two or three times, I jumped out of bed and yelled, “WHAT???” I was half asleep and didn’t realize Mr. Lucky wasn’t in bed and was more than a little freaked out.

Then I hear a muffled voice say something that I couldn’t make out. When I looked over and realized Mr. Lucky wasn’t in bed I figured it out and ran out into the living room.  Our hallway is L shaped so I ran around to the other side of the hall next and Mr. Lucky was lying across the hallway with his legs in our half bath. He said he couldn’t move. I touched several places along his feet, legs, side and back to see if he could feel any of it and he said that he couldn’t all the way up to his chest. Above his pecs, he had full feeling. I saw blood on his hand and forehead and realized he had bumped his head, so I asked him several questions to see how cognizant he was. He was able to answer all of my questions easily. I didn’t move him because I have seen too many movies and TV shows where they tell you that if someone falls like that not to. I then called 911.

When the firemen got there, they were professional and kind. One of them got Mr. Lucky’s list of medications while the others talked to Mr. Lucky. I heard one of them tell Mr. Lucky that he couldn’t sit him up and they were waiting for the paramedics.

Side note: I know this is a lot of detail, but trust me, it becomes very relevant soon. It also gives you a better sense of why this whole experience blows.

When the paramedics arrived, they put Mr. Lucky in a neck brace and sat him up where he lost control of his bowels. They then carried him out the door and took him to the nearest hospital, where I joined him after cleaning up his poo and gagging repeatedly. Also, I got dressed and let my dogs out, but none of that is relevant.

When I got to St. Luke’s, they were just sending him off to have a CT scan. For the first few hours, Mr. Lucky wasn’t answering many of their questions. The staff there thought it was from the head injury. I thought it was from him taking trazadone (sp?) just two hours before he fell. One of the side effects is that it makes a person dizzy and the whole point of the perscribee taking it is to ensure that their brain shuts off so they can sleep. It could have been a mixture of both, I’ll never know...

After the CT scan came back and didn’t show any fractures, they started asking about the medication Mr. Lucky takes that is common to bipolar people. I told them I didn’t think he was bipolar. He does have a slight personality disorder in my uneducated, but live with him opinion, and the medication helps mellow that out, but he isn’t full-blown bipolar, again in my “live with him” opinion. Then, they said they were transferring him to another medical center where they have a very good trauma department. They took him in an ambulance and I ran home, let the dogs out, sprayed some deodorizer to get rid of the poo smell, and went to the new hospital.

When I got there, I was taken back to Mr. Lucky’s room where the admissions people got his insurance information from me and asked if I had a list of his medications. The dude takes a LOT of medications, for blood pressure, his personality disorder, and several other minor things, so I couldn’t possibly rattle them off. The previous hospital assured me that they would send it over and I explained this to the medical staff, who couldn’t have had time to read that big file yet and, although frustrated that I couldn’t cough up that info on demand, accepted my answer nonetheless.
During this time, Mr. Lucky kept asking me and the nurses if he could have the collar off because his neck hurt. Seriously, he probably told me and whoever was in the room at the time 20-25 times in two to three hours. So much that I asked about why the collar was hurting his neck so much. I was assured that they were waiting for the trauma surgeon to review his case and then they could answer my questions.

Around mid-morning, the trauma surgeon came and introduced himself. I do not remember what he said his name was because I had been awake about 36 hours by then, with the exception of a quick two-hour pre-accident snooze. For the purpose of the story, we’ll call him Dr. HolyMisdiagnosisBatMan. He said that Mr. Lucky’s spine and head were fine and that he had a condition called Conversion Disorder. I do not remember this, but Dr. HolyMisdiagnosisBatMan later said that the diagnosis was partly based on when I had asked if he thought Mr. Lucky was faking and he said yes, I stated, “it wouldn’t surprise me.” Which, by the way, it wouldn’t have surprised me if I thought he were trying to manipulate a situation in his favor, but I didn’t think that at all. Also, there was a giant, baseball sized bump on his forehead and he hadn’t moved a muscle in 10 hours. At that point in time, I truly believed there was something seriously wrong, and was blown away that it could all be a psychotic break. It just didn’t add up to me, but I really didn’t think I had a choice but to believe Dr. HolyMisdiagnosisBatMan. After all, he is a professional and does this every day, right?

Anyways, I am not going to completely dispute that I said that because, as I mentioned, I had been awake since 7:00 am the previous day and my mind wasn’t that sharp. What I do know is that not one question was asked of either one of us in that emergency room regarding Mr. Lucky’s mental health prior to making this diagnosis. Also, there was never an MRI done. Dr. HolyMisdiagnosisBatMan didn’t think it was necessary said MRIs are “very expensive.”

OK, enough of that…On with the story.

It was mid to late morning by the time we got that diagnosis. Both Dr. HolyMisdiagnosisBatMan and the emergency room doctor came back in and said that they were going to be a little while because they had to decide whether they were going to release Mr. Lucky or admit him for “observation”. I asked how I was supposed to get him home and into the house if they released him since he is a 6’ tall man and I weigh 120 pounds soaking wet (I didn’t really say that, but..yeah).  They pretty much ignored me and told me that it was going to be a few hours before it was decided.

I had to go home and catch an hour of sleep and care for our pets, so at this point, I left. I returned at approximately 2:30pm and he had already been admitted to the neurology ward of the medical center. When I got to his room, the collar used to stabilize his neck was off. I questioned Mr. Lucky about it and he said they took it off before they moved him up to his room. He didn’t get an explanation as to why, which I attributed to his condition of being a man…sorry guys.

Throughout the rest of the day, the nurses came in and moved him every couple of hours and there was a discussion about pain medication because Mr. Lucky was complaining that his upper arms felt like they were on fire. They decided on Tramadol.

I hung around for a while eating grapes and cheese from the cafeteria and keeping Mr. Lucky company and then went home.

Days 2 and 3: Observation Nightmare

On day two, I arrived at the hospital at 8:45 am and throughout the day observed the hospital staff moving Mr. Lucky approximately every two hours. I was also in the room twice when Physical Therapy and/or Occupational Therapy came and tried to make him sit up. I did not see the assigned doctor We’ll call him Dr. Yesman) assigned to him this day because he had checked on Mr. Lucky prior to my arrival. I mostly sat around playing games on my phone and eating turkey sandwiches from the cafeteria, which were particularly good.

On day three, I arrived at the hospital and 8:00am so that I could catch the doctor since he came in so early the day before. Turns out, he didn’t show up until about 10:30 that day. Overnight, Mr. Lucky had developed severe leg tremors. I was very concerned about them, and by the sideways glances, the most wonderful nursing staff in the world was worried as well.

Later that morning and shortly after Physical Therapy had come in and sat Mr. Lucky up on the edge of the bed again, Dr. Yesman did come in and I asked him what he thought was wrong. He explained that Mr. Lucky had Conversion Disorder which makes the arms and hands feel numb. He then glanced at the severe leg tremors and added, “and that leg shaking is part of it.” He then gave me a list of rehab centers that would work with Mr. Lucky’s mental and physical condition to help get him over this psychotic episode. Mr. Lucky really did take that one in stride. I, however, had to leave so I could bawl, which I did all the way home and most of that night. In addition, I decided not to reach out to the three family members that still talk to him because I really didn’t think he would want them to know he was that kind of crazy.

Now, understand that I have lived with this man for 13 years. I have loved him, hated him, and nearly divorced him twice. I know him mentally and never, not once, did I think he was that crazy. I felt like I had been punched in the gut. I am so sorry to those of you who have a loved one with a severe personality or mental disorder, as living with one with a slight personality disorder is a constant emotional roller coaster and this diagnosis has made me very aware the turmoil this causes in your mental and emotional stability. Just know someone out here is thinking of you.

Day Four: I dropped the “F” bomb…

On day four, I had to work because the company I work for doesn’t offer sick leave and only 10 vacation days per year no matter how long you’ve worked there (small business, right to work state.), So I went to the hospital at lunch time. Mr. Lucky still had severe leg tremors. To be specific, his legs were uncontrollably tremoring to the point I thought he was going to fall out of bed. The side rails were down, so I put them up so he didn’t shake right off of it. The nursing staff was diligent in checking on him and very kind to me. As a matter of fact, they were the best nursing staff I had ever seen. Dr. Yesman had not been in and was nowhere to be seen in the short time I was there during my lunch hour.

I went back to work, but left early so that I could tour the “rehabilitation” center where we hoped to receive insurance approval to move Mr. Lucky to deal with his mental disorder. Nice place, but smelled like stale food and old people to me, as most care facilities do.
I made it back to the hospital at 3:55pm. Upon entering the room and seeing Mr. Lucky was back in a neck brace. My temper kicked in and despite 2 nurses and a doctor present, my reaction, which I should regret but don’t was to throw my arms out to the side and assertively say, “what the f$*&?”. Sorry, easily offended by curse word folks, the reaction fit the moment for me.

Very soon after, a female doctor whom I had never seen (we’ll call her Dr. FinallySomeoneCompetent) came in and explained that Mr. Lucky’s case was referred to her and she could tell right away that the injury was a spinal compression injury and explained that when he fell and hit his head, he whiplashed his neck extremely hard and it compressed his vertebrae into his spinal cord causing a central-type spinal cord injury. Dr. FinallySomeoneCompetent had already done an MRI for confirmation and had contacted the surgeon and he would be right up to rush Mr. Lucky to surgery.

I remember sitting there thinking (so, NOW this is an urgent case???), but maturely kept my mouth shut and listened.

When the surgeon, (we’ll call him Dr. NoTimetoSugarCoat), came in, he started explaining what the surgery would entail and the risks. He mentioned that since it had been more than 72 hours since the injury that the damage would most likely been permanent and he would rather do surgery that night, but if we would rather wait, he would do it the next morning.

Did you catch that? Spinal cord injuries need to be dealt with within 72 hours. They tell us this after taking his collar off and moving him around for approx. 90 hours. Niiiiiiice.

So, I said, “Wait, 72 hours? I called 911 not 10 minutes after this happened and he’s been here.” To which all three doctors in the room (Yesman, FinallySomeoneCompetent, NoTimetoSugarCoat) who had their backs to me and were mostly addressing Mr. Lucky, whipped their heads around and suddenly started talking, or rather stammering at once.

They informed me that with this type of injury it doesn’t matter how long you wait to do surgery. I can’t be 100% sure because I’m just a dumb woman who is only the wife of a dumb patient, but I think that they were trying to cover their butts.

Nevertheless, I let it go, because my main focus was Mr. Lucky having the much needed surgery and getting better. He went into surgery at about 7pm that night and came out of recovery at about 11:30pm. All went well and I found Dr. NoTimetoSugarCoat to be very informative and competent, from my distraught family member perspective.

The Days After: Here You Come Again (isn’t that a song?)

The day following Mr. Lucky’s surgery, Dr. Yesman apologized to us. He said that the reason he got Dr. FinallySomeoneCompetent involved was because something about the diagnosis didn’t sit right with him and he wanted another opinion. We thanked him and he left. Mr. Lucky was in great spirits, but the leg tremors were still very bad and made it hard for him to concentrate on anything else. But, for being out of surgery only a few hours, he was doing great.

Dr. FinallySomeoneCompetent had taken over the case completely and told Mr. Lucky that she was putting him on baclofen to reduce his leg tremors. By then, I had been trying to help and found out that if I squeezed the upper part of his leg, I could reduce them for him. The baclofen worked way better than the standard “here let me solve this problem by squeezing” solution that I was employing.
Dr. HolyMisdiagnosisBatman paid us a visit soon after and explained how he came to the conclusion that the injury was all in Mr. Lucky’ head. I am pretty sure he tried to blame it on me, based on my comment that I was not surprised that he was faking, which I don’t remember making, but let’s face it, I’m not the doctor here. And it’s not like they asked me any questions to make sure they got the diagnosis, right? So I’m SURE it’s all MY fault. (That was sarcasm, by the way).

In the following few days, Mr. Lucky was pretty lethargic, our garage door broke and almost fell on my head, and I drank a couple of coronas after fixing it. That’s about it… They had him on a mixture of oxi and baclofen and he slept a lot. I have to say, though, that the nursing staff never wavered. A HUGE shout-out to all of the nurses out there. You guys have been the uncontested heroes of this shitty situation and I would like to take this opportunity to thank you for that. You are an absolutely fantastic group of people. Seriously, I can’t say enough good things about people who become nurses. You simply rock! (yes, I’m dating myself with that one).

Rehab: Can you Hear Me Now?

10 days post-accident, I had to go back to work full time, with the exception of the day Mr. Lucky was moved to rehab or, later, readmitted to the hospital. Dr. FinallySomeoneCompetent insisted that he do his rehab at that hospital because she wanted him close, so they decided not to send him to the rehab center I had chosen after all. At that point, I was glad because it seemed like the best choice and Mr. Lucky would receive the best care. I wasn’t totally wrong on this one, folks.

So, on day 11, Mr. Lucky moved to the hospital’s spinal care rehab facility. They gave me a brochure and it looked like and ideal place that would get him back on his feet. Best of all, we weren’t going to have to do this alone. Their brochure pointed how they had complete support program for spinal cord patients and their families. I was relieved. They personally told me that starting the following week, they would have a “coordination” meeting every Tuesday and give us the big picture and help us find resources. That sounded great to me! I am very good at scouring the Internet to research things, but I was running in to some walls in finding help for a retired military guy who suffered a spinal cord injury after he retired. That isn’t a joke. There really isn’t much out there.

On a side note, because I couldn’t really do anything to help right away and was feeling helpless, I turned to what I know and started turning our home into a smart home so that when Mr. Lucky came home, he would be able to control the lights and entertainment with his voice. Because I am not a nurturer by nature, but still care, that is the best way I figured I could help.

In the two months following, Mr. Lucky attacked his rehab and was in great spirits. The rehab team was wonderful and his family came from out of state to see him. They all wished him well and went back to their lives, checking in frequently. His Sister and Daughters are fantastic human beings. We were both grateful for their support.

Around mid-March, I got to the hospital on a Saturday morning and Mr. Lucky had the leg shakes again. They were backing him slowly off of the baclofen but had to increase his dose which left him a zombie. He was that way for 3 days and then slowly started to get better. Those days were both scary and boring, if that makes sense. I found myself wanting to get away from the hospital as often as possible, but feeling like I should be there when I wasn’t. It was maddening.

We were supposed to have our first “coordination” meeting with all of the support people March 21, at 1:30pm, but they postponed it a week because the doctor (We’ll call him Dr. Rehab) wasn’t going to be there. I was disappointed because it would have been great to get some information. I hadn’t seen anyone but nurses, food service, and cleaning people for days due to my work schedule, even though I had been there every day. I figured that as long as Mr. Lucky was making progress, then that’s what is important.

Incidentally, it was March 21st when a big celebration was in order because Mr. Lucky was first able to move a thumb. Not kidding. That very day he discovered he could lift his bum slightly and move a thumb. He was coming right along! Woot Woot

You see, with spinal cord injuries, there is no prognosis, meaning that you can’t predict what will come back (if anything) or when. Mr. Lucky’s injury was a central-type incomplete spinal cord injury, which means that he has a better chance of recovery than a person with a complete spinal cord injury, but to what extent, no one knows. When you or a loved one have this type of injury, you have no choice but to take it day by day and every little improvement in feeling or movement is a HUGE milestone.

That being said, the next couple of days were very exciting in our post-accident world. Mr. Lucky began moving some fingers on his left hand and could somewhat wiggle his feet.  He still swore that he was going to walk out of there. I believed him. I still believe him and he has come MILES in spinal injury terms since then and is now able to feed himself a little, push buttons on his remote, and operate his electric wheelchair.

It was also the day that the gravity of the situation donned on me. It didn’t sink in slowly, either. It hit me like an anvil. Looking back, I suppose I should have been smart enough to figure it out way earlier than I did, but in my defense, I was working full time, taking care of 5 animals, a 4-bedroom house, two cars, both our finances, our medical bills and visiting a hospitalized husband daily. So I was a little tired and not thinking clearly. It came to me when I asked Mr. Lucky if he got any information from anyone about a plan for after rehab and he said that he hadn’t. Suddenly a giant sign dropped out of the sky and flashed before my eyes that read, “Hey, dummy, you are on your own here and you have no idea what you are doing.” It was and still is really scary, but very true.

Finding Help: Roll Out the Red Tape

The next day, I pulled into our driveway and noticed our outside front faucet was leaking like crazy. I tried to turn it off and couldn’t, so was on the Internet trying to find someone to fix it (you need a plumber for that, by the way. Who knew?) when I got a call from a Social Worker whom I had never met. She said she worked for the hospital and informed me that Mr. Lucky was going to need full time care after he leaves the hospital and that neither of our insurance companies would cover it.

According to her, unless you are in a very low income bracket and qualify for Medicaid (which we do not because we have two incomes that put us way over the top), you are metaphorically screwed.

I know what you are thinking. “But, Mrs. Lucky—you said Mr. Lucky is a retired military veteran, can’t you just go to the VA???” Yeah. I thought that, too, so I asked Ms. Socialworker if she thought the VA would help us since he is retired military. She said our primary insurance checked and Mr. Lucky wasn’t “registered” with the VA . I’m wasn’t even sure what that meant, but didn’t want to look stupid as well as unstable, as I had suddenly burst into tears, so I didn’t ask.

Ms. Socialworker explained that our only course of action would be to pull $23 per hour out of our butts with no insurance assistance for a care giver. we live in a low-cost of living right-to-work red state and here, we are middle-class. Elsewhere, we would be living on the streets. No way do we earn enough to pay for that. I don’t even make that much per hour. I am also not the type of person who could become a full time care giver. I informed the Social Worker of this and I’m not sure, but I think she scoffed at me. She explained to me that the bottom line was that we make too much to qualify for Medicaid, but too little to afford to pay for care ourselves and I was just going to have to figure something else out.

After calming down from this very stupid phone call, I decided I would just go to the VA and straighten this out. I mean, he IS retired military. Of course they’d help, right?

On a side note, Mr. Lucky had dangerously low blood pressure that day and was very sick to his stomach. Poor guy. I didn’t burden him with the horrifying information until he was feeling better.

The next day, I went to the VA hospital in our city and they were very kind to me, but basically told me I was out of luck because they only take care of people with service-related injuries. The social worker there was far more helpful than the one at the civilian hospital and pointed me in the right direction as far as getting medical power of attorney. As a result, I now have medical power of attorney and am still SOL as far as getting care for my husband.

While there, someone informed me that if my state would have expanded Medicaid under the ACA (that’s Obamacare for those of you who don’t know) that we would have easily qualified for Medicaid’s long-term care program. Whether that’s true or not, I don’t know.

Finally, on March 28th, we had our first “coordination” meeting with a representative from all corners of the medical staff and Ms. Socialworker.  I recorded it because I was not thinking clearly and didn’t want to miss anything they said. It was rather uneventful meeting the first time and a snooze-fest the second time.

The bottom line was that they were going to move Mr. Lucky to a skilled nursing facility and I needed to do some research on which one. Apparently neither insurance would be paying for it and, according to the Ms. Socialworker, the VA would not help us because he was on Tricare and not VA medical care when his accident occurred.

So, I decided to start a go fund me page to see if we could get a trust fund set up because I was pretty sure that in just a couple of months, I would be living in my car and eating cat food. I told friends and co-workers that and they didn’t believe me. They seemed to think I was being over-dramatic.

Upon posting the request for help on Facebook, I got a couple of people who expressed sympathy, a couple of people who donated (all family and my friends) and a large amount of people who told me to go to the VA for help…like I hadn’t thought of that. So, although the few donations I got were extremely helpful in extending Mr. Lucky’s care, it was pretty much a flop because EVERYONE thinks that a retired military guy is automatically helped by the VA. Hint-unless the injury is service related, they don’t help.

I kept wondering if we would be in this situation had they done that MRI right away, rather than misdiagnosing Mr. Lucky and had many people tell me I should sue, so I contacted a reputable attorney and he said that since I can’t prove that Mr. Lucky would have been any better off had they diagnosed him properly right away, so I had no case. That was the first time that the phrase “this blows” popped into my head, but it wouldn’t be the last.

I found out the rehab facility I was going to put him in originally did skilled nursing, so, out of convenience, I chose them right away.
At the end of April, Mr. Lucky developed a resistant UTI that landed him in isolation and on some very heavy antibiotics. He was moved to a different part of the hospital and no one told me. I showed up to his room and he was just gone. I was able to track him down thanks to a nurse at the rehab center (yay nurses) and he was there for 10 days. Coincidentally, they moved him the same day the insurance covering rehab ran out. I have always found that curious, but I’d hate to think that they were basing their medical decisions on how they are getting paid.

To sum up our extended hospital stay, in the two months Mr. Lucky was in rehab, we only had the one “coordination” meeting and Ms. Socialworker was no help whatsoever in finding resources. Fortunately, I have a very intellectually curious boss and co-worker who were able to dig up ideas and helped eventually point my spiraling life in the right direction. I’ll get to that in a bit.

Upon discharge, I received one of those “How did we Do?” questionnaires where I commended the therapists and nursing staff and complained to the hospital about their lack of communication and the misdiagnosis. About a month later, I received back a two page letter thanking me for my comments and explaining why I am completely wrong. They even found a way to blame Mr. Lucky for not informing me when he was moved.

Oh, well…

One morning, my boss walks in my office and hands me a list of veteran’s advocates who could help me navigate the VA. I poured through them and made a phone call to my State’s VA office and got an appointment for the following day. The appointment lasted approximately 1 hour because I came prepared with the paperwork pertaining to his injury, his DD214 and his military medical records. By this point, I had been through so much red tape and filed so many claims that I was in the habit of carrying both mine and my husband’s documents with me when I had an appointment. The folder was about 1 ½ inches thick at this point. I met with a very nice and competent advocate there who agreed with me that this whole situation blows. He worked diligently to file a VA pension claim on behalf of my husband, gave me a copy of the claim and his card and said I should hear something in 3-6 months. It’s been two months since that meeting and not a peep.

As a side explanation for the novices like me, here is the deal….there is a difference between a pension a veteran receives upon retirement and a VA pension. They are two totally different things. A VA pension is for disabilities received on active duty.  While a DFAS pension is for those who stick with the military long enough to retire. Mr. Lucky already received a DFAS pension and, silly us not knowing they are two different things, didn’t realize we could file for a VA pension for his medical problems that he suffered while on active duty. You see, he has to be 70% service related disabled before the VA would lift a finger to help us and we are trying to get him some help here, so I thought I’d give this angle a try.

Also, if you find yourself in a spinal cord injury situation, the Christopher and Dana Reeve foundation is an excellent resource. I would like to thank my co-worker who found them for me and the organization for sending me a packet of information that I can refer to when I need to.  I plan on making a donation to them when I am rich enough to move from eating cat food to eating ramen noodles again (that is a joke for now, folks, I’m not quite there yet.)

Long Term Care: This Really Blows

In keeping with the tradition of making sure people whose lives have been turned upside down stay on the some kind of cruel emotional roller coaster, I was told 20 days into the skilled nursing facility that our “Skilled Nursing” portion of our insurance had run out 3 days prior and we were now required to cough up $11,543 per month (yes, I said per month) out of pocket to pay for my 30-year veteran, double-insured, quadriplegic husband’s care.

Now, I don’t know how most people would react, but having this fresh anvil dropped on my head was the final straw. I was bawling and saying, “What am I supposed to do? Where am I supposed to take him?” I quickly came up with 2 plans. You see, during this time, a patient advocate from my primary insurance company (we’ll call him Mr. Lifesaver) called me and said that he was there if I needed anything…So, I called him bawling and asked him what I was supposed to do. We both honestly thought that they were kicking a quadriplegic that didn’t even have his wheelchair yet out on the streets because we couldn’t pay. We were both terrified! Turns out that’s illegal for them to do without a small notice, but they did give me that impression that we were headed that way.

My second solution was to load my husband in the car and take him to the VA emergency room. When I told Mr. Lifesaver of this plan, he promptly made me promise to be his patient advocate should he ever be in this situation. He then called Tricare who said they were prepared to pay for the skilled nursing when my primary insurance quit paying and that they would pay as long as it was medically necessary. Hint: Being a quadriplegic does not necessarily qualify as a medically necessary.

So, that problem was solved for the moment. On to the next…

A couple of days after this happened, Mr. Lucky got another UTI. It was the same strain and he ended up in the hospital for 4 days. During that time, his blood pressure and heart rate were dangerously low and the wonderful nurses at the hospital gave him a shower and treated him very well. The shower is significant because the skilled nursing facility only allows two showers per week for our $11,543 per month. Since then, he has had one more and is currently on a 30-day antibiotic program to stamp out the strain of infection that he has. I’m told it is common in patients with catheters.

While he was in the hospital, I met a discharge planner who helped me understand our future options as far as finding Mr. Lucky a facility that is better with spinal cord patients. Up to this point, the facility I had him in hadn’t had a patient as severely injured as Mr. Lucky and there was a learning curve for them. They have really stepped up since then and are doing a pretty darn good job.

When we got back to the skilled nursing facility, we promptly had a meeting with the staff. The skilled nursing facility has been MUCH better at communicating than the hospital ever was. The meeting attendants included the Head Nurse, the Head Therapist, the facility’s Social Worker (who is awesome, by the way), an Administrator, the center’s financial lady, Mr. Lucky, and me. Joining us on the phone was Mr. Lifesaver as my advocate. Mr. Lifesaver may work for a big, often referred to as evil insurance company, but he has been the only person to really stick by me and his support has been priceless. As a matter of fact, both insurance companies have been great. Go figure.

During this meeting, we found out that although Mr. Lucky does not qualify for Medicaid in the traditional sense, he may qualify for Medicaid for long term care as long term care is a different thing all together in the insurance/medical community and as far as Medicaid is concerned.

The way the American health care system is set up, the only way an average person can afford long term care after an accident or when they get old is if they have purchased a very pricey long term care insurance policy. To complicate things further, you cannot buy long term care insurance from insurance company. It can only be purchased through a financial broker. I often wonder how many people know that prior to an accident. My guess is not many.

I also found out that because Mr. Lucky is less than retirement age, he can collect disability from Social Security, but because he opted for early retirement and is already collecting his Social Security at a lower rate, we didn’t qualify. Granted, the couple of hundred dollars wouldn’t have made a difference in an $11,543 bill, but at this point, I was desperate and very very scared. I would later find out that this information was wrong.

So, I went online and applied for Medicaid. Within 4 days, I got a denial letter stating that I needed a disability determination from the Social Security Administration and I needed to set up a Miller Trust for my husband’s “excess” income.

After a quick Internet search, I found out that a Miller trust is akin to a financial black hole where you put all of your income over what Medicaid deems you to need and upon your death, the Government takes it all with interest to repay your long term care costs.

The very next day I called the Social Security office to get the ball rolling on the disability determination and they had no idea what I was talking about. *Sigh*

My next step was to go to the local Social Security office to get a disability determination. Of course, their hours are like 9am-4pm Monday-Friday, well, except Wednesdays, when they close at noon. I get off work at 3pm, so I decided to go get this done right away. At 3pm, I loaded in my husband’s truck, which I was driving so it didn’t rot, and started driving toward my town’s Social Security office. There was an accident, so I didn’t get there until 3:45. There was standing room only and at 4pm, they closed the door and asked that anyone who was willing come back another time. I needed to get to other things, so I volunteered.

Upon returning a couple of weeks later, I was able to get in within 20 minutes and they were very kind to me and set a telephone appointment for the following week with both me and Mr. Lucky. In addition, they gave me a multiple page form to fill out and a couple of letters that I can use to set up a Miller Trust and submit to Medicaid.

So, that’s where we are so far. We are currently just waiting for that phone appointment and have to get a lawyer for the Miller Trust, which I am working on.

We have still not heard anything from the VA.

Tricare is still paying for Skilled Nursing, but I am told by the staff at the Skilled Nursing facility that they probably won’t for very much longer.

Oh, and Republicans, including my own representatives, still see me and my husband as “lazy asses that need to get a job and pay their own way” and are still trying to get rid of Medicaid.

When they do, I hope they at least provide some guidance as to where a 60-something year old retired veteran who is a quadriplegic can find a job that would cover his $11,543 per month long term care so that he isn’t tossed into the streets to die, but I’m pretty sure they don’t care, so they won’t. It is very sad. 

Now, living in a red state I do have many conservative friends and they have assured me that it is not me they wish to harm. I believe them, but what they fail to realize is that the reality is that it is exactly folks like me that will be hurt if medicaid is cut and/or eliminated. Because for most of us, it's all we have.

Keep in mind, this is just my opinion and my story. I fully understand that we have had it easy compared to people who are uninsured or under insured and that there are thousands of stories just like or worse than mine out there, only probably shorter and less sarcastic.

May we all find the help and support we so desperately need and may those who wish us harm gain some compassion.

Sincerely,
Mrs. Lucky
  

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