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Wednesday, July 24, 2013

24 - Disgust and Mistrust

For anyone "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story. For anyone who has been along for the whole wild ride - Thank you!
Disgust and mistrust

Disgust and mistrust would be a good description of how I was feeling.  I was disgusted with the disrespect, lack of compassion and inability to listen I had been witnessing for months.  My mistrust was fueled by the selective communications, lack of adequate testing (in my opinion),  and the apparent disregard for my mothers well being.  Why couldn't they just realize mom needed more than they could provide?  Why did it seem they were opposed to referring her out of the area?

Moms had spent another week in the hospital and was discharged on (or about) November 1, 2012.  Her need for emergency medical intervention had caused us to miss the appointments with the specialists who we had really hoped could help.  There was no way I would ever be able to recreate that schedule.

Five specialists at 2 different top facilities over 5 days in another city had taken lot of coordination and hadn't been easy to arrange.  The best that I could hope for was that mom would be well enough to travel soon and maybe I could at least get one of them rescheduled.  Hopefully, the rest would fall in to place.

After talking to my brother and sisters, we decided that even if I couldn't get the appointments I had to take mom someplace - anyplace but here.  I knew I could at least find an emergency room when I got there.  I needed to get her out of the valley.  Someplace where somebody cared.

We truly believed mom would not live long if we didn't get her someplace that might not just write her off because of her age (76) and her long history of severe RA, which is what we felt was happening here.

I wasn't sure how long it would be before she would be able to make a five hour (each way) trip.  I also wasn't sure she even still wanted to go.  She was getting tired.  I was afraid she was giving up the fight.  I didn't blame her, I had been amazed at her resilience through all of this.

I couldn't imagine being in as much pain as mom was in.  I also couldn't imagine not actively trying to find a doctor that would at the very least listen and really try to help her.

Only two things needed to happen before we would leave, but they had to happen simultaneously. I needed acceptable weather and mom not only physically able to make the trip, She also needed to be mentally ready.  I wondered if this was kind of like waiting for the stars to align.

It could take a while before the weather wasn't a concern - I didn't want to be stuck on the highway
in a snow storm with mom in her current condition.  More importantly, mom had to be ready.  I was pretty sure, with enough pain medicine, (even though it wouldn't be easy) mom could physically make the trip, but I wanted her head in the game.

As soon as I was sure mom was mentally prepared AND there was a even a small window of opportunity concerning the weather, we'd "make a break for it", I decided.

For now I would have to keep my temper, hold my tongue, and stroke the huge egos of the doctors I had available for her here.  "I guess it's better than nothing", I mumbled to myself as I dialed the phone, "but just barely".

I managed to schedule appointments with moms Primary Care doctor, who I wasn't very impressed with; and her Orthopaedic Surgeon, who I was losing faith in fast.

 I couldn't believe that with all of moms trouble, and her most recent hospitalization, it was going to take several weeks to get her in to the Orthopaedic Surgeon and even longer before we could see her PC.  I wasn't convinced either appointment would prove to be an effective use of time.  I also wasn't convinced it would be worth the energy we so desperately needed to preserve, but I had to keep on keepin' on!

Mom, on the other hand, was convinced of a number of things.  She was convinced they were trying to "out wait" her.  She was sure they all wanted her to just die or worse, they wanted to kill her!  "So, who all do you think was in on it", she had been asking this question every since the incident with the Nurse Practitioner.  I wasn't sure she was wrong, but I couldn't believe she was right.  After all, they had been given ample opportunity.  By the middle of October she had been in the hospital approximately 15 weeks, nearly 1/3 of the year. That thought made me shudder.

"I don't think they want you dead, mom", I would reassure her again and again.  I really didn't think they wanted her dead, If they thought much of her at all.  Luckily, a day or two after I called for the appointments, the Orthopaedic doctors office called us back.  The doctor could see us this Friday to look at moms knee.  It had completely blown out in the hospital when she was being transferred in her drug induced stupor, or at least I assume that's what happened.  The knee had some problems to begin with, but that's a whole other story!
 The call moving the appointment up seemed to calm some of moms fears, for a while.

I wish my own fears would subside.  I didn't want mom walking too much because of her knee; she had "doctor's orders" to not sit too long because of spine pain; if she laid in bed too long her
joints would stiffen from the RA.  Maybe they were trying to kill both of us!

A lot of house work had been neglected during moms week in the hospital, so I started busying myself to try to take my mind off of the disgust and mistrust I was feeling regarding the "medical professionals" it seemed mom was forced to utilize - They didn't seem very professional to me.

When Friday morning rolled around I got moms breakfast and reminded her that we had to get ready for her doctors appointment.  Why had she just stared at me like that?, I wondered. Thinking maybe she hadn't heard me I told her again, "we need to be ready to leave by 10:30".  Another blank stare.  "Did you hear me mom"? I asked.  Finally she responded, "OK, which doctor"?  I turned around & looked at her to see if she was joking or if she still looked confused.  I couldn't tell.  She was going through her date book and seemed to be almost "studying" it.  "OK", she said again as she looked up when she felt me staring at her.  She didn't sound OK.

Once again, we were told that moms knee looked "fine".  I was staring at the X-ray he had on the board, mom seemed to be staring at the wall.

Moms knee didn't look fine to me.  Of course I don't have a degree, so what could I know?  I pointed to where it looked like the prosthesis was no longer attached to the bone.

"It's fine", he said, dismissing our concerns. His plan was to just "drain it" when the fluid built up.

"Are we just going to drain it for the rest of my life?", mom sounded dejected.  She also said something about them not planning on her living very long, she guessed.

"But, the fluid builds up so quickly and her knee looks like it's going to buckle every time she takes a step on it", I told mom to show him. "I don't think it's just the fluid", I insisted.

He didn't seem interested in mom showing him anything.  I wasn't sure he even heard us until he said, "I can see what I need to on the X-ray".  He prepared the needle & syringe for aspiration of the fluid obviously collecting in moms knee.

It didn't seem to matter what I said.  "It's fine", was his answer to all my concerns.  "Should we maybe get a second opinion?", I wanted to know.  He told us it "it wouldn't make any difference".
Maybe the same question that had worked with her PC when we managed to get the RA referral would work now, I thought. "Would it hurt", I wanted to know. It turned out that he thought it would.  He didn't even respond directly to the question.  The doctor proceeded to tell us, in his usual jovial manner, about people who had ignored him and went in search of help some place else.  "Then they come back and expect me to fix it", he arrogantly informed us.  I was really getting tired of doctors telling us how good they were.  If they were all that good, why was my mother dying with no clear explanation.  I don't know if his stories irritated mom as much as it did me, she seemed to be really concentrating on something.

"Is something wrong", I asked mom when we returned to the car.  What wasn't wrong?  I assumed she was just as angry as I was.

"I'm fine", she answered.  I had some other errands I needed to run so I asked mom if she felt like riding along or if I should take her home.  She didn't care either way, "Whatever is easiest for you".  I again asked mom if something was wrong.  Looking back, she answered a little "too" quickly, "No, I'm really fine".

Once again I was reminded of the changes I've witnessed others go through when they neared their walk with The Lord.  "OK, well we'll get the errands taken care of and grab some lunch", I was trying to sound upbeat, " How does that sound"?  Quickly I added, "as long as you're sure you feel like it".

With assurance that she was "fine", we set off.  The rest of the afternoon seemed to be OK.  Mom was seeming more like herself, with only glimpses of the unease I had noticed on her face earlier.  Maybe getting out somewhere other than a doctor appointment would do her good.  As she often did, mom would wait in the car when my errands entailed just running in.  Usually mom works on Sudoku or Crossword puzzles while she waits.

"What are you looking for", I asked when I returned to the car a second time and she was engrossed in her date book again. "Nothing, really", she quickly slipped the book back in to her purse.  She looked like a little kid whose hand had just been caught in the cookie jar.  Something was wrong, I could just feel it.

I got mom in the house and went back out to gather groceries and bring in her wheel chair.  It was just about 5:00PM.  Mom wanted to sit in her recliner and watch the news.  I got her set up and went to start dinner.  Something in the headlines on the news caught my attention and I walked to the living room.  "I'm OK, now.  I got it", I had no idea what my mother was talking about, but she was clearly pleased for a moment.  I had no interest in the news anymore.  Mom was finally ready to tell me what had been on her mind all day.

"Why didn't you say something?", I wanted to know, "You have to tell me when somethings wrong so I can try to help".  Sheesh, I am not a mind reader!

Near tears, mom explained her reasoning for keeping it from me, "If I told you I didn't know what day it was, you might make me go back".

"Go back where?", I thought I knew what she was talking about, but I wanted to make sure.

"I was only confused because they changed the date" mom said emphatically.

"Changed what date?", I was pretty sure I already knew, but it was clear mom wanted to talk.

"Well, it had been the 30th, right?", she must be referring to the doctor appointment.

"Yes, it had been, but they moved it up to the 16th" I reminded her, "remember they called a couple days ago."

"Yes, but I forgot it had changed & then you were taking me to the doctor, I just had to trust you.  I thought it was the 30th and I had lost 2 weeks!  I thought I had gone crazy.  If I told you then you would take me back to the hospital, I can't go back there.  They'll kill me.", she was talking fast.

I put my arms around her, "They're not trying to kill you mom, and I won't make you go back, not unless you want me to".  I hoped that was a promise I could keep.

Mom was clearly pleased she had remembered the date without help.  In her mind, that surely meant she wasn't crazy.  In my mind, this could be a sign of the "dementia" they had kept referring to in the hospital.  Could they have been right?  I didn't know.  After all, she hadn't remembered without help. Her confusion was the reason she HAD to watch the news - they always show the date!  Now, at least, I knew why she had been so obsessed with her date book all day.

I didn't know why she was reaching for they date book again, though.  Had she already forgotten? Good grief!  I was ready to go start researching more about dementia and/or anything else that might be causing this.  Turns out she just wanted to figure out when we could travel the five hours to try to find help.  "God decided to keep me around", she informed me, "If I'm going to live, I don't want to be in this much pain all the time".  I agreed and began making the phone calls and sending emails begging for appointments.  I really hoped it wasn't too late.  It can't be too late!

During the past week mom had an overdose of Neurontin; aspirated resulting in pneumonia; started having a LOT more pain in her spine, resulting in increased morphine dosages every few days (she was currently prescribed 150mg ER morphine TWICE A DAY, plus roxinal (liquid morphine) PRN for break through pain); and now her 25 year old prosthetic knee was seriously (and very noticeably) giving out.  Someone has to care, don't they?

How long would it take me to get her in to these Nationally known facilities after having to cancel them before?  Each of them had cleared a spot for us on their calendars once, I wasn't sure they would, or even if they could, do it twice.

Would they even be able to help her?  Or, could the doctors here be right?  Should we do what they suggested: "give up" and "enjoy the time we had left"?  Or, should we continue to fight?

Once again, I had more questions than answers.......

Was it even safe to make the trip?  Or, had that Nurse Practitioner been right when she told me it would "do more harm that good"?  What if they want or need to do surgery to help?  Is mom strong enough to survive a surgery?  Of course, I always had to torture myself by thinking about the worst case scenario - what if she dies during the trip?

I found myself wondering if mom really did have dementia.  I had vehemently insisted that was not
the case, but today had certainly made me question it more than once.  Even if she was "losing her mind", shouldn't we still address her awful pain?  I didn't for one minute believe she would forget the pain - even with the extraordinary amount of morphine she was taking.

My turn to obsess - Maybe it just runs in the family.

Maybe tomorrow will be a better day.


JM said...

You should compile a complete log of your mother's medical appointments, hospital stays, and other medical treatments and events, including what was said and what was done, and by whom, and send it to every clinic in the country as an example of how NOT to treat a patient.

I'm very glad for your sake that your family is supportive toward your efforts to care for your mom, because this would be an impossible journey without that support. Bless you!

healthcare hostages said...

I wish I would have had the forethought early on to keep better records. By the time I realized how bad it was, things were happening so fast that I could barely write my own name I was so tired! I am hopeful that if enough people read and share this blog, maybe others will be more willing to talk about their own experiences and maybe our collective voices will be heard.

I really am aware of how lucky I am to have so much family support. I also am very aware that there are others out there who aren't so lucky and I can't imagine it.

Thank you so much for taking time to read my post and thank you for your comment and kinds words!

Rochelle Barlow said...

Oh my gosh. How awful. This breaks my heart. I hope you guys can get in to where they'll actually care and listen to your mother. It's just ridiculous that they are treating y'all this way.

Annett Bone said...

Reading through this post takes me back to medical situations that I have been a part of with people close to me. They weren't the most positive but I remind myself of what positive I can get from them. Thank you for sharing your heart and reminding me how much our parents need love and support, especially during difficult times such as these.

healthcare hostages said...

It is awful and ridiculous, I agree. Unfortunately, I am fairly (very) certain we are not the only ones going through similar things.

I appreciate your taking time to read the post.

Thank you for your comments.

healthcare hostages said...

I think there are more stories like mine than we will ever know. I really hope that my sharing this story will open some doors for honest PUBLIC input. I have researched a LOT and find very little input from consumers, it seems most are driven (and paid for) by insurance companies and/or the government. I'm sure it's not all bad, but senior healthcare could certainly could use some improvement.

Yes, our parents indeed need love and support. I presume we will too one day.......

I appreciate you taking the time to read my post. I hope you have a little more time to read the earlier posts to fully digest the problems we have encountered.

Thank you for your comment!