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Sunday, July 7, 2013

7 - From the frying pan in to the fire!

Today is day 7 (and my 7th post) in the 30 day blog challenge I joined.  For anyone "just tuning in" this post may leave you wondering what the heck I am rambling about.  I promise it won't take too long to go back and review my first 6 posts so you can catch up with my story.  For anybody thinking there is nothing here that could affect you, I hope you're wrong.  I hope you are wrong because, not because I wish bad things for you, but because that would mean that you are truly alone in life.  You see, although my story revolves around senior care giving and health care, I believe there are lessons within my story that could be applied to ANYBODY that might EVER know someone (or be someone) who is incapacitated, no matter their age.

After mom had been in the hospital for nearly 3 weeks in VERY SERIOUS condition, we were told they would be releasing her soon.  She wasn't doing great and still at about an 8-10 on the pain scale (even with some pretty heavy duty pain medicine), but my siblings & I had spent the past 3 weeks (when we weren't at the hospital) installing safety/grab bars; rearranging furniture; installing a "roll in" shower (just in case); and in general preparing to bring mom home in whatever condition she was in.  It had been a number of years, but I had some health care experience; I have a daughter who is a critical care nurse whose brain I can pick; 2 sisters that have at least some health care experience. We were certain, that with the assistance of Home Health, we could and would provide care for her at home.
Mom has RA in MOST of her joints
and in her lungs.  Actually, she has most
if not all of the symptoms in the definition.

Our biggest concern at this point was that with her severe RA and OA she could break easy!  Another fracture at this point would be the end. And, we had already come close due to the lack of communication regarding her level of care at the hospital.  We already knew moms limitations and were prepared to deal with them.
Rheumatoid Arthritis Definition
Rheumatoid arthritis (RA) is a chronic autoimmune disease that causes inflammation and deformity of the joints. Other problems throughout the body (systemic problems) may also develop, including inflammation of blood vessels (vasculitis), the development of bumps (called rheumatoid nodules) in various parts of the body, lung disease, blood disorders, and weakening of the bones (osteoporosis).


Mom had to be on IV antibiotics 6-8 weeks, which according to the doctors and the discharge coordinator would not be covered by Medicare and were VERY expensive if we were to self pay.  Ok, we can deal with this, right?  Didn't mom say a lot of her friends had gone to rehab at a local "5 Star" Skilled Nursing Facility and they really liked it?  So, after researching our options and their website as well as the Government created list, we made an appointment & checked it out!  

Hindsight, huh?!  Don't make an appointment
Just pop in!  A surprise visit is more apt to be
an honest visit!
Not bad!  Very friendly.  Staff seems to be engaged with the residents.  Nice therapy room.  Even a room that we can reserve to have Easter dinner as a family!  Double occupancy rooms, but they are nice and that will probably be good for her, right?  All in all we believed it had to be better than the Hell mom been through, right?  We were all excited, including mom.......this had to mean she was getting better and could come home soon, right?

These people were NOT nice! Most were NOT engaged with residents!  Why are 1/2 of the residents sleeping IN THEIR PLATES??!!  Why is it taking SO long for my mothers pain medication?  Why isn't anybody in the nice, big therapy room?  No, this can't be happening........WAKE UP!!!!!

Now, I know in my heart that when God is ready to take my mother home it will be so.  But I can't just simply sit and watch her suffer in severe pain and obvious depression until that time if there is anything that can be done to ease her pain.  Something is not right, I just know it.  Is this even the same place that we thought our mother would be comfortable with?  They don't seem very friendly today......... I talked to the nurses and the social workers and the aides (I think there were a couple aides that listened, they just couldn't make anything happen).....pretty much anyone I thought MIGHT listen.  WHY WON'T THEY LISTEN??!!

Each time I talked to someone they assured me that they would (or had) phoned the doctor and had to wait for his orders before they could do anything.  The pain level in her back was still quite high and now her knee was so swollen it was starting to cut circulation off in her foot.  I finally insisted they make an appointment and transport mom and myself to the orthopedic doctor even though he had already assured us that her knee was "fine" didn't look fine to me!

Finally he agreed to drain the fluid off the knee!  It only took a little over a month to convince somebody to take a look at it.......I had been telling everybody I could at the hospital and at the SNF that something was really wrong with that knee.  Once the fluid was drained (which we were told "didn't look too bad, but it will be sent for culture anyway") mom was almost immediately able to take a few tentative steps and seemed to be feeling some better.  Within a few days the fluid had returned and mom was declining again.  We had received no update on the culture.

Several more days of waiting for doctors response "before anything can be done" and I have had enough.  Well, I don't know about you, but I know if I think someone is dying I should call an ambulance instead of just "wait for the doctor".  So, Monday morning, April 16, 2012, after almost 18 days after mom had been transferred to the SNF I asked them to call an ambulance and their response almost made me do things that would have probably landed me in jail!

"I'm sorry, we have to have a doctors order to call an ambulance" I was told by the administrator.  Are you kidding me?  This is crazy.  I let them know that I didn't need a doctors order to call for the ambulance, to which they she replied "If you do, you will likely be responsibly for payment of not only our charges, but also any hospital charges".  EXCUSE ME?  My mother is dying and you think the almighty dollar is going to make me just take this?  I replied (probably not very calmly and certainly VERY loudly) "You have 10 minutes to have an ambulance here" and simply walked back to my mothers room and my sister & I began getting her ready to get out of this place - ONE WAY OR ANOTHER!  WHY WON'T THEY LISTEN??!!!

10 minutes later as mom was being loaded in to the ambulance, my sister and I were removing all of her personal items from her room.  She won't be back to this place.  We are not certain of many things right now, but of that we are certain!

2 of the 3+ vials of PUSS from moms knee
(only 3 days after the first draining)
"Which hospital" the paramedics wanted to know.  Oh, man, another split decision!  Well, the first one hadn't been so great and I felt they had "kicked" her out too soon, so let's go to the "other" one.  We rolled in to the emergency room right about 2PM.  It didn't take long for them to get the results of her blood tests back and trust me when I tell you that only by The Grace of God should my mother have still been with us.  Again, I begged them to drain the fluid from her knee which was about 4 times it's normal size again.

It took me some time to convince him that it really needed to be drained and cultured.  I have never heard a doctor "gasp" like he did as he drew that fluid.  It was obvious that it was filled with staph. It's also obvious that if they don't intervene somehow and fast, we are at the end.  Of course nothing happens "fast".

As they prepared to admit her and started trying to obtain records from the first hospital somehow it was decided that it would be in her best interest to return to the hospital that had originally treated her.  Another ambulance ride and several more hours in an emergency room and she was finally in a room.  They had found another pocket of "fluid" around the L1 fracture when they had done an MRI at the first hospital of the day.  Mom was going to have a dual procedure in which they again drained the back and performed what's called debridement of her artificial knee.

I just don't know that she can make it through more procedures in her current condition.  I so wish I had insisted that she not be released the first time.  I know I can't dwell on what might have been, but it's hard not to.  It's hard to not second guess every decision you have made.  It's hard to not think "if only".  It's just plain hard!  I'm so tired and so emotional I can't even think at this point.

Fortunately, the nurse mom had that night was awesome and I felt comfortable enough to go home and cry myself to sleep for a short time!  It would be the first time I had been home since, well, I can't remember when!

Looking back, that nurse would ultimately change our course.  He offered information and told us of resources that in the now nearly 6 weeks no one had even mentioned.  He told us what mom would have to be able to accomplish to be considered for acute rehab.  WHAT?  I didn't even know what that was at the time.  Why didn't we know that was even in the realm of possibilities before?  What else was I missing?  Why had I just blindly followed what they told me?

Well, the blinders are off!  Watch out!  I'm tired of being brushed off & ignored.  I KNOW MY MOTHER and someone is going to start paying attention to her needs!  I know her health is pretty complex on a good day and this isn't a good day.  I don't have a problem with them not knowing how to treat her, but I do have a problem with them taking the attitude of "If we can't do it then no one can".

I want a second opinion.

I bet I still have to say that louder and more assertively before I get their attention!

I WANT a second opinion!

Still nothing?

Where will this road go?

Stay tuned!


LSaueracker said...

Thought the oath was to do no harm, not to do nothing. Glad you are such a strong advocate for your Mom. Is it because seniors won't complain they do this? You and I would be stomping with the other foot.

Duck Mommy said...

Wow! I can't imagine having to see your mother in such pain. Praying for you and your family.

Bonnie Gean said...

I'm sorry to hear that you're having a rough time getting the proper care for your mother. I know it's not easy on her either. I'm sure she thinks in the back of her mind she is being a burden to you.

It's important you let her know this isn't the case. I know, if I had the chance, I would've taken care of my mother.

My prayers are with you and your family during this troublesome time.

sugandha said...

Medical facilities can be a real pain at times...I just wish that no one has to go through them ever...

Susan ~ Today's Working Woman said...

Wow! You have been really under a lot of stress and strain with this situation. I am praying that you will find some answers soon and that you, your mom and your family will find some relief soon.

Stay strong and know that you have a large writing community holding you up during this time of need.

Susan Dusterhoft
Today's Working Woman

healthcare hostages said...

Thank you for your comment. I wish I knew WHY it all happened. I suspect that it's because seniors don't complain; they have to see more patients to cover their over head costs; they have more than "just MY mom" to care for.

I suspect there are a variety of reasons this happens. I just want to maybe keep it from happening to someone else!

Have a wonderful day!

healthcare hostages said...

It's truly a challenge to maintain sanity when someone you love is in pain!

Thank you for your prayers - I truly believe it's the POWER OF PRAYER that has carried us this far.

I read part of your story. The prayers are reciprocated!

God Bless you and your family!

healthcare hostages said...

Funny, they are suppose to help you RELIEVE pain!

Thanks for taking the time to read my post!

Have a great day!

healthcare hostages said...

Thanks Susan! I hope you will follow us to the end of the story. I know it's kind of a "taboo" subject, but I am passionate about trying to make a difference in this arena.

I'm pretty sure The Lord is guiding this ship. I'm pretty sure He made me hit the button that enrolled me in this challenge when I just wanted to send for more information! How will I ever find the time to produce 30 posts in 30 day!

Thank your for your encouragement and support! It really makes a difference in producing the "next" post when you know someone has at least read this one!

Have a Blessed day!

healthcare hostages said...

This is a HUGE point Bonnie! Thank you for reminding me how important that piece of the puzzle is! I think that's a subject that will have a face of it's own this blog!

Thank you for your post and your prayers! Please keep them both coming my way!

Have a blessed day!

Anonymous said...

It breaks my heart that your mom and your family are going through this. I commend you for sharing your difficulties, though, because you are not alone, and its vitally important for people with senior relatives to be aware of the state of the elder healthcare system. I learned through my own walk through senior care, that its SO important to make plans for your parents/relatives when they are still healthy and able to make clear decisions. My mother lost her mental faculties near the end, and it was SO hard to decide what to do, and what might she have wanted. It might not be the most pleasant of conversations to have with your loved ones, but it sure is an important one.

Great job as always, Brenda...keep it up!


healthcare hostages said...

Thank you Kimberly. Don't despair for us though! Every day is a blessing!

It is a little tough putting this down on paper with enough detail to make the point, but not so much detail that I embarrass or shame anyone. Some details of personal care giving are simply to personal to share!

However it really is a vitally important subject, which when you really think about it could be applied to ANYONE we love regardless of age.

I am so sorry to learn of the walk you took with your own mother. There have been a few times through this ordeal that I truly believed mom was "checking out" mentally and it scared me more than anything I could even imagine. That is one of my biggest fears!

Thanks again for your kind words and encouragement!

Here's to tomorrow!