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Friday, July 5, 2013

5 - Why won't they listen?

Today is day 5 (and my 5th 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 4 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.

Why won't anyone listen?

  I know my mother and she (after living with severe rheumatoid arthritis for 50 years) knows pain!  However, I have very rarely heard her complain.  Her thought is that it won't make her feel better and will likely make people not want to be around her.

I am going to fast forward past the several visits to the primary care doctor; rheumatologist; and a visit to the emergency room complaining of low back pain that was unusual and worsening very quickly AND THEY WOULDN'T LISTEN (rest assured that sometime during this challenge I will most likely revisit that time!), to March 8th, 2012 when things started going from bad to worse.

As we waited, probably pretty impatiently, in the ER room with mom several things happened that made me cringe.  When asked what level her pain was at on a scale of 1-10, mom cried out TWELVE.......I had never heard her say anything over 3.  I also knew that a 3 to her was like a 10 to me, so at 12 she was in serious pain!  She hurt so bad she could hardly move.  She couldn't even get out of bed to go to the bathroom, so they had to catheterize her.  They finally decided to give her IV pain medicine.  I told the nurse that her arms did not straighten out completely due to her RA and to please be careful - evidently careful was not in her vocabulary.  Mom is still dealing with ulnar nerve damage from that episode.  WHY WON'T THEY LISTEN?

After finally getting the IV in they gave her a dose of dilaudid; 1/2 an hour later no relief.  They gave her a dose of morphine; minimal relief for about 15 minutes.  Then a dose of valium; total relief - SHE QUIT BREATHING!  Mom told me later that it was a peaceful feeling with no pain and that she could see & hear us all yelling at her to breath as she hovered above us.  The next words from the doctor absolutely dumbfounded me.

"We've made her as comfortable as we can, I will write a RX for pain pills for when you get her home"  EXCUSE ME?!  How do you expect me to get her home???  She can't even sit up!  Shouldn't we maybe try to find out what's causing this??!!!  I told her (the doctor) that wasn't going to happen and at the families insistence off they went to x-ray.  Good news, maybe.

The x-ray showed an active fracture in her spine at L1.  That can be fixed!!  "So, someone will call you in a few days........"  WHY WON'T THEY LISTEN?!  We can not take her home in this condition!!!  After a very heated conversation with the ER doctor, it was finally decided that her PC would "take some time out from his busy schedule" and come to the hospital to evaluate her.  I don't know if he would have admitted her if there hadn't been 8 of us in the room with mom and obviously not very happy about the lack of response, but he did agree to keep her there while they drew blood and prepared her for a procedure that "should give her almost immediate relief".

Ok, now we are getting somewhere!  Or, so I thought.  It's like a nightmare that you can't wake up from.  Within 24 hours mom was so sick that she literally could not move at all and was getting worse fast.  Something more than a fracture was going on here, I just knew it.  I tried to tell the doctors that there had to be something more.  WHY WON'T THEY LISTEN??!!!

Within a very short amount of time all of moms systems started failing: Heart; Lungs; Circulatory.  Everything was going haywire.  Her blood tests were showing her white blood count going up rapidly.  Day 3 and mom is barely coherent, hallucinating, unable to move at all and still in severe pain.  The blood culture was finally in and the news was devastating.

Why won't they listen to their own stats?
Mom now falls in to 5 of these risk categories!
Mom was Septic.  She had contracted a staph infection that had somehow entered her blood stream.  And, of course, with an active staph infection they are unable to do the procedure to relieve the pain in her back.  Now, I don't have a medical degree, but I do have a little common sense.  I asked what the likelihood was that the pain was increased because the staph attacking the fracture site, the answer was "that would be highly unlikely".  I asked if they could look at her knee as it didn't look right and was told that it was an RA flare since they had taken off all her immuno suppressant drugs.  Hhhmmm, again no medical degree, but common sense again kicks is an artificial joint in that knee, it may collect fluid, but it has never flared like this.  It's also red and warm to the touch.  WHY WON'T THEY LISTEN??!!!!

Another day or 2 go by when they finally discover a "pocket" of staph......guess where!  At the site of the fracture.  They drained the pocket and inserted an antibiotic flush.  The knee still looks not quite right, but I am told they can't worry about the knee until they clear the staph.  I ask if they can at least drain the fluid that has collected and am again told that it wasn't necessary.  WHY WON'T THEY LISTEN??!!  Finally mom seems like she is on the road to recovery, but still has a long way to go.  After nearly 3 weeks in serious condition and still looking very ill, she was sent to a Skilled Nursing Facility for rehab.

She still can't feed herself; brush her teeth; or really do anything for herself.  She can't hardly even talk at this point, has a catheter, a PIC line for IV antibiotics......was she really ready to be released from the hospital?  As a family we made sure someone was there as many hours a day as was possible, as it was obvious that mom was NOT getting the care she needed without us.  Meals would be set in front of her and then taken away with a comment that "she didn't eat".  If we hadn't made sure one of us were there to feed her at every meal she would have starved.  We tried to tell them that she couldn't eat by herself and needed assistance - WHY WON'T THEY LISTEN?!

I felt that moms health problems were getting more complicated rather than improving and again asked for outside referrals.  I had researched a number of top health care facilities all around the country, and was willing to take her ANYWHERE but was told that "We have the best health care in the country right here in the valley", and brushed aside.  What a scary thought!  This is as good as it gets??  Somethings NOT right!


That is a question that I found myself asking over and over.  It seemed to me that they had already written her off and were just waiting for her to die.  Was it her health or was it her age?

mom's "morning" pills!
I suspect it was more the age.  I also suspect that a great number of seniors do NOT get the best (or sometimes even the right) care.  I shudder to think of all of the seniors handling their health care without family support or a friend to advocate for them.

Don't get me wrong, many seniors will do just fine handling all their own affairs UNTIL THEY DON'T!  Many seniors find themselves seeing multiple specialists in addition to their primary care doctor, with each prescribing medicines, etc.  My mother is very sharp mentally, she does crossword puzzles; reads; balances her checkbook among other things.  Even so, with the number of medications and the effect and/or side effects it became overwhelming for her - and sometimes for me!  I kept exhaustive lists and spreadsheets of her medications and needed complete silence to make sure I didn't make a mistake.  I made sure and carried a copy of the spread sheet to give to each doctor we visited.  Most of the time they just tossed it aside.  Of course they would go through the medications and ask us if she was still taking each one.....I understand the need to ask the questions, but at least show me enough respect to at least act like you appreciate my efforts.  I know that a drug interaction or reaction could be trouble!  The results could be devastating if there is not continuity in the care provided.  It can also be devastating if even one of the many medications are given/taken incorrectly!

Many parents, whatever the reason, don't want to burden us with their problems.  I suspect the reasons vary from denial that there is a need for an advocate all the way to a true fear that they will lose their independence if we know they need help.  Unfortunately, with the growing number of cases of elder abuse, some senior truly have a reason to not tell their family!  It's sad, but true!

If you happen to be a senior reading this blog and are in a situation that you truly don't feel that you can trust a family member please find other resources through your Church or local Senior Resource Center!  Don't let yourself become a health care hostage, but don't set yourself up to become a victim either!

Again, I wish I had become way more involved in moms health care BEFORE she really needed me!  It sure would have made things a lot less complicated.  It's not fun figuring out what has to be done when you are in such an emotional state and your loved one is literally on their death bed.  Don't follow my path - if there is even a chance that you will become a care giver for a parent or any other senior - get on the road BEFORE YOU'RE DUE TO ARRIVE as there are sure to be obstacles!

Have a great day!  Oh, and go see or call your parents, other senior relatives and aging friends!


Marisa Slusarcyk said...

I really enjoyed this article's content. It is all soooo true. My grandpa has had so many times when they say "lets just amputate" and the family (fortunately we have some nurses in the family) have advocated for him and said NO we will try and fix him first. Fortunately because of that he has every limb, finger and toe. My mom is still young, she will be 50 next month, and I have been scheduling her appointments and making sure she goes because she always is so busy taking care of us that she puts her own health off. It is NEVER too early to get involved nor is it ever too late! Bless you and yours for taking on the responsibilities that come with love :)

Anonymous said...

So true and beautifully said! This will surely help someone else! Please listen for everything she has said is TRUE!

Don't let medical opinions take over your true knowledge of your parents. You can be sure that you know your parents better and if you don't, it's a good idea to get to know your parent emotional, financial, and health being.

It will help you guide the medical fields in your parents best interest to keep the quality of life going. Or at least appoint someone and support that someone with all your heart and soul.

healthcare hostages said...

Marisa, thank you for your comments! I am so glad to hear that your grandpa has you all to depend on and advocate for him!

It sure did me good to hear you say your mom was still "young" as I will also be 50 next month! Happy Birthday to your mother and bless you for already being in tune!

And, you are absolutely right. NOW is the time! Never to early or too late!

healthcare hostages said...

Thank you so much! As I am writing and dissecting this story I often feel like I am rambling! It's nice to know that others see some value!

It's hard to not let yourself get caught up in a cycle that you think "well, they are the doctor, I guess they know best". They often don' best it's often a guess on their part!

Anita Scott said...

It has been a long haul, hasn't it? I am so glad she had you advocating for her though! You're just stubborn enough (and controlling):) to get the job done right!

Anonymous said...

Oh wow. You really struck a cord with me. I was my mother's caretaker through diabetes and dementia. My heart goes out to you, and I applaud you for being such a staunch advocate for her. Blessings to you.


healthcare hostages said...

Thank you Kimberly! and, wow! back at you! Those are 2 things that we have not had to deal with, thank goodness......not sure I am equipped! But I am so glad to hear that you were there for your mother!

healthcare hostages said...

Stubborn? CONTROLLING?! ME???

Yes, it has been a long haul........I just hope that light at the end of the tunnel is NOT a train!

Maeko said...

This post really scares me, because I suffer from lupus and, although I am young, I wonder what the heck is going to happen when I get older. I thought the idea of Health CARE and Patient CARE is to... pardon the French... F*CKING CARE about and for the patient, and in this case with your mother's traumatic experience, it is totally apparent that they were merely treating her but not CARING for her. If they had even taken a few minutes each time to listen to people who knew her best, they would have been able to avoid so much of this.

Your mum is lucky she has your beautiful family and wonderful advocates for people like us who suffer from auto-immune problems. I believe you are making a huge difference right now. I really admire your work and words here and I am so glad that people are being receptive to it.

Your mum is very lucky she has you.

I hope I am as lucky as she when my time comes. But I pray for total remission so that it won't have to come to that. Sending prayers for your mom.

Thank you, as well, for all the advice for care-givers and family of other suffers. This is extremely useful info.

Love + aloha, Mae Xx //

healthcare hostages said...


I don't mean to scare people, but it is a very scary subject. I won't even pretend I have all the answers, only one - PRAYER!

If you read my other posts, you know that my mother was young when she was diagnosed with RA - about 27 or so. Lupus can be every bit as debilitating as RA, but with the PROPER care can be managed. BUT, someone has to be watching out for the risks not only associated with the disease itself, but also the many complications and INCREASES risks of the drugs used to treat auto immune disease.

Only The Lord knows where your path leads. However, it doesn't hurt to let Him or your family and friends know which path you would like to take. Openly communicate with your loved ones about your wishes. Openly PRAY to God! Don't be silent!

Thank you for your kind post and honest feelings! It make me feel like maybe I can make a difference by sharing some of the pain that my family has endured.