Thursday, May 19, 2011

Our Crazy Night in the Nursing Home

We spent the night in a nursing home last night with Cade.  You might be wondering why.  Where do I start?  Ever since we left the NICU 9 months ago, I have been asking, searching, looking for ways to get Medicaid benefits.  We were told in the NICU that all micro-preemies get Medicaid for their first year, but once we got home, we realized that was not the case.  Our social worker in the hospital was completely useless which looking back ended up costing us thousands of dollars that we should not have had to spend.  We should have been set up with Medicaid for both babies since they both came home "medically dependent" with ng tubes and with their long histories of heart surgery, mechanical ventilation, chronic lung disease, and brain bleeds.  Instead, we spent over $16,000 last year in medical bills.

It wasn't until I vented about insurance here on this blog that I found out about MDCP - Medically Dependent Children's Program  (Thank you Renita!).  In my books, MDCP may otherwise be known as "top-secret, jump through hoops and hurdles, ridiculous program."  It made no sense to me that if you were poor enough your child could get all the therapy he needs, but if you have jobs and pay your insurance premiums, your insurance gets to tell you how many therapies your child needs.  I called the number to get on the MDCP list.  It can take 5-10 years to move to the top of the list, so you have to say that you want to do the Rider 28 Waiver.  After several weeks, a case worker and nurse came to the house, asked all about his medical history and looked at Cade.  After several more weeks, they finally called to say he qualified.  Our next step was to stay in a nursing home for a night as part of the Rider 28 Waiver which then moves you to the top of the list.  Are you lost yet?  Well, I am.  It really doesn't make any sense, but if that is what we had to do, then so be it.  After months in the NICU followed by two more weeks at Dell - one for Camdyn and one for Cade, I figured one night in a nursing home was easy.

When we arrived at the nursing home, I took one look at it and was scared to go in.  It looked to be at least 50 years old, kind of run-down, and kind of prison-like.  A huge fence circled the premises and there were no garden areas.   I grabbed our bags, put Cade in the stroller, and ventured inside.  The inside was no better.  It looked old and unkempt.  The staff was all very friendly though.  A nurse showed us to our room.  It was no better.  The only word I can think to describe it is dreary.  I kept thinking to myself, "OK, I can do this.  It's only one night." 

They got us registered and took a quick look at Cade.  Then they told us we could leave and come back around 9 PM.  It was only 4 PM at this time.  I took Cade to a park down the street where he played for a while until Daddy got off work and met us back at the nursing home.  We fed Cade his dinner in the common room and all the ladies just loved him.  They all sat around just watching him eat and laughing at him when he made silly faces.  He loved the attention.  It was really cute.  Then we went to a burger joint nearby for dinner.  When we got back to the room, we watched a movie on our computer.  At this point, I was thinking, "Hey, this isn't so bad.  We'll go to sleep and get to leave in the morning."

Sleep was not to be had at the nursing home though.  A railroad backs up just a few feet from the nursing home, and I swear a train came through at least four times throughout the night.  It came through with a vengeance too blaring its horn and making the room vibrate.  It seemed like the train might jump the track and come right through the room; it was that close.  Then we kept hearing a lady saying, "Helllllooooo, Hellloooooo, Helllooooo Someone, Helllooooooo."  At first, I thought she was walking the halls looking for some company.  This went on for about 15 minutes.  Then we hear her start saying, "Helllllp, Helllllp, . . . Helllp Me."  I still thought she was probably just crazy and the nurses weren't responding to her because maybe she did this every night, but I decided to get up anyway.  I just wanted her to be quiet.  I walked to the nurses station down the hall to tell them someone keeps saying, "Help me."  A nurse quickly went to see about her, and I overheard the lady telling the nurse that she couldn't find the call button and she needed to go the bathroom.  Then the lady said, "Thank you sweetheart" to me from her room.  My heart broke then because I could have gotten up a lot sooner.  I just didn't realize she was actually calling for help when she was saying hello.  After I got settled back in and almost to sleep, it was time for another train to come by!  I have no idea how the residents get any sleep.  

Then it became freezing cold in our room.  Earlier in the day, we thought maybe there was no AC.  We had a fan on and the window open.  A nurse came by to check on us and noticed we were stuffy in our dreary room.  She told us that the thermostat is in a lady's room down the hall that controls that whole wing.  The lady has figured out how to open the case and pushes all the buttons.  The nurse told us that the lady thinks it is an ATM and that she can get some money out.  My thought was she is probably trying to get some money so she can go stay at the Days Inn down the street instead.  Well, I guess she was up during the night trying to get money out of the "ATM" again and made it freezing cold.  Then Cade woke up most likely because it was freezing.  I snuggled up with him and finally got a couple of hours of sleep. 

At 6AM, a nurse came in and told us we were free to go.  It didn't take us long to pack up and head out.  I told Jim in the morning, "Well, that wasn't that bad."  He looked at me like I might have lost my mind and said, "Well it sure wasn't that good either."  We both laughed.

I still don't see why we had to stay except that it might be a way for the nursing home to make a little extra money.  We paid $115 for our luxury stay at the Windcrest Nursing Center.  One nurse looked at Cade and listened to him with a stethoscope for no more than 2 minutes.  No one weighed him, took his blood pressure, looked at his g-tube, took a temperature, or anything.  They knew we were just there as a step in our process to get Medicaid.  Hopefully, we can get some benefits soon and there won't be any more ridiculous steps in the process.

Overall, the experience was very humbling.  I feel so badly for the residents that have to live there with a train right outside their window and dreary surroundings.  The nurses were all very nice though.  I learned that I better start saving for long-term care now.  I do not want to live in a place like that my final years.  I also know that I will never put my mother in a place like that.  Jim told his mom the same thing.  I hope my kids will take good care of me when I'm old.  I had three, so hopefully at least one will take care of me and their Daddy.

Here's a picture of Cade at the park down the street from the nursing home.

Cade did not care that our room resembled a dungeon.  Interesting side note: The first thing Jim noticed in our drab room were the red plugs (see above the bed).  He said, "It's sad when you know what the red plugs are for."  If you have ever had a child or loved one on life support, you know the red plugs.  Those are the important ones - the ones hooked up to the back up generator in case of a power outage.  I remember always being very careful not to go anywhere near the red plugs in the NICU.

The lovely view from our window.

One of the many trains that passed right behind us. (Warning - Train in picture is closer than it appears!) 

What a trooper!  Look at that sweet smile.


Sarah Pope said...

Oh my goodness! That's crazy!! Does your state not have TEFRA? It's like Medicaid except you pay a monthly premium?
I guess it's good that it gave you a better perspective of a nursing home. I've never been in one so I imagine it would enlighten me as well.
Hope you guys get caught up on your rest after the long night!

Megan said...

This is probably the most insane thing i have ever heard. How in the world THIS is the process for you to get Medicaid is just plain CRAZY. Perhaps next they'll be asking you to sleep outside in the park with the homeless people to move up in the list???

It kills me that every state appears to be different with Medicaid. I'd say this is an area that could stand to have one set of rules for everyone.


Stephen W Thomas said...

We just completed our night at the same nursing home two weeks ago. You are right, the train is closer than it appears in the photo. Staying a night at the nursing home gave me a new point of view on things though. Unsure when you got accepted to MDCP, but getting into the program is much harder since the end of April 2011. Hope all is well.

Anonymous said...

I'm so glad that you were able to get the MDCP. I also have twins. They were born at 26 weeks. My son is fine but my daughter has mild CP, epilepsy & PVL(a type of brain damage). I did not know about MDCP until your post. I'm surprised her team of doctors, OT , PT or speech therapist didn't mention this to me. I'm going to apply today! Thanks for sharing your story!