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Friday, July 19, 2013

19 - Permanent Record

For anyone "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you'll take the time to go back and review my earlier posts so you can catch up with my story.  If you are thinking there is nothing in our story that could affect you, I hope you're wrong.  I hope you are wrong, 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 and/or needs an advocate, no matter their age.  For anyone who has been along for the whole ride - Thank you!  I appreciate the opportunity to share our story.  Regardless of whether you read only this post or if you have read the entire blog, I would also appreciate your thoughts and comments........please take an extra minute and scroll to the bottom of the post to the comments tab and share your thoughts and/or experiences.

We returned from our most recent expedition in search of help for moms rapidly deteriorating condition and many afflictions in mid October, 2012.  We had not had much (or any) success on that trip, except to learn that there had never been any cultures done (at the hospital where we live) that indicated mom had ever had MRSA.  It had been "assumed" it was MRSA when the infection returned after the first round of IV antibiotic.  Unfortunately, that assumption had made it's way in to moms file and was now in her "permanent record".

When I hear "Permanent Record" I have flash backs of junior high school.  I don't know how many
 times I was warned about my permanent record and the things it most certainly would contain.  I found myself wondering what else might be in those records (moms not mine!)  I need to look in to that when I get time.

We were scheduled to see five doctors in 4 days the end of the month, including an orthopaedic spine specialist and, somehow, we had managed to get another appointment with the knee doctor now that we knew she did NOT have a confirmed case of MRSA.  It was, as far as I was concerned, a miracle that we were able to coordinate all those appointments - something we would have never been able to do where we live.  Being able to schedule them all in the same week meant we only had to make one trip. But I had to get some rest before then!  I just didn't now how bad I would need it or how soon.

I gathered insurance cards & moms ID as we waited for the paramedics.  Truthfully, I probably could have driven mom to the hospital that morning, but I wasn't sure she could withstand a long wait and there was ALWAYS a long wait so we called for an ambulance.  Her pain level had increased considerably; she was nauseated; had a slight fever; and her BP was up.  She didn't look good at all.

IV pain medication helped the pain some, which in turn began stabilizing her other symptoms.  In a few hours I was tucking mom back in her own bed after being dismissed from the ER.  Why hadn't they admitted her, I wondered.  I had that nagging feeling things were going from bad to worse AGAIN.

In less than 24 hours we were back in the ER.  They didn't see the humor when I told them we were there for our "required second visit" before being taken seriously.  It boggles my mind that they think they are saving money.  Wouldn't it seem more cost effective and possibly even save lives if they didn't hurry people out the door so quickly that a second ER visit was necessary?

"Have you even tried to call her primary care?" she wanted to know.  I don't know who stopped me from popping that nurse in the mouth that day but, Thank you!  As I glared at her, I explained (as calmly as I could) moms PC had been less than accommodating with appointments and we couldn't wait until "three weeks from next Tuesday"!  Besides, his office wouldn't even open for another hour and a half.  Mom needed help NOW.  This WAS an emergency in my opinion.  I was tired of them treating mom like she was lying about her pain - like maybe she was just looking for drugs.  I told the nurse (and anybody else whose path I crossed) as much.  I insisted they admit her.

This time mom was admitted for pain control.  All the "usual" drugs produced very little results and mom was still in a lot of pain.  No one seemed sure what to do next.  "Have you ever heard of Palliative Care", the doctor assigned to mom asked.  I knew what Hospice was and we had already considered that maybe it was time to ask for a Hospice evaluation, but I didn't know much at all about Palliative care or what it entailed.  I was about to find out.

Mom had told us that she didn't want to do this anymore, she didn't want to keep getting poked & prodded only for them to tell her they didn't know why she was in so much pain and they didn't know what else to do for her.  She was tired of being treated like she wasn't even there as "transporters" and "technicians" talked over her.  She was tired of being made to "wait" just a few more minutes to have her needs tended to in the hospital.  She was just tired.

I closed my eyes and tried, unsuccessfully, to keep the tears from spilling out.  I didn't want to see mom in pain anymore, but I didn't want to let her go either.  We talked for a long time that day. Mom did not want to live like this forever, but if she was going to be alive she didn't want to be in this much pain all the time.  "Maybe when we go next week they will find something that will help" mom said softly.

I didn't have the heart to tell her right then, but I didn't think were ever going to find out.  I didn't see anyway that mom would be able to make a 5 hour trip anytime soon.  I didn't think she could live much longer at all with this much pain and her systems all going crazy.  We agreed to the Palliative Care consult, they would also call for a Hospice consult.  No time to feel sorry for myself, I needed to keep my head in the game.  We needed to keep mom as comfortable as possible.

She wasn't a candidate for Hospice as her "life expectancy" was "certainly greater than 6 months", we were told (The Palliative care doctor was also a consultant for Hospice).  "Have you ever taken morphine?", mom was asked during the Palliative care consult .  No, she didn't think she had.  She had heard that it was very addicting though - she didn't want to be addicted to pain medicine - that scared her.

They spent a lot of time with mom, explaining to her the differences between "tolerance" and "addiction", what to expect in the way of side effects, and their role to monitor and adjust the dose as the tolerance increased or decreased.  Mom still wasn't sure, but since she was still an hour away from her next "scheduled" dose of her current medication (which wasn't working at all by this point), she agreed to give it a try.  The decision was made to start her on a small dose of 15mg twice a day and see where we went from there.  Mom was sure that would go in her "permanent record".

I wasn't much worried about her permanent record - seemed to me that nobody looked at it anyway.  If they did we wouldn't be asked the same questions over and over.  I had other things to worry about.

I told the doctor about our referral to the rheumatologist and how we were now suppose to see a number of other specialists.  He thought that was good and that we should continue our quest.  "But it's 5 hours away", I explained.  I really didn't think mom could make the trip and told him so.  "Well, don't
cancel those appointments just yet, we still have a few days", the doctor still thought we had a chance.

I wasn't so sure we were going to make it, but saw no harm in waiting a few more days before cancelling the appointments we had worked so hard to coordinate.

Do you think we really have a chance?  Or, is it time to give up this fight?

I guess we just have to wait and see.


Anonymous said...

Brenda; I'm appalled at how the medical community is treating you and your mom, but unfortunately, not surprised. Patients are a business more than anything these days, and personal attention and compassion is often lacking. Thank you, thank you, thank you for sharing your story with others so that they might garner help and hope in the midst of their own trials. Blessings to you and your mom

Anonymous said...

Brenda; I'm appalled at how the medical community is treating you and your mom, but unfortunately, not surprised. Patients are a business more than anything these days, and personal attention and compassion is often lacking. Thank you, thank you, thank you for sharing your story with others so that they might garner help and hope in the midst of their own trials. Blessings to you and your mom

healthcare hostages said...

Kimberly, I have also been appalled through much of this. It's too bad that our healthcare system has become more about money than patients. Fortunately there are still some great providers & and facilities out's just not easy to get to them. I am very hopeful that by sharing my story others can avoid some of the horrible things we had to endure.

Thank you so much for your comment and kind words. You truly do inspire me to keep writing!


Roxanne Catherine said...

Hi Brenda,
I can relate to this post! We had a similar situation with our mom a few months ago! You seem like a strong person and like you said there are some great providers out there. God bless!

healthcare hostages said...

I'm glad you found something to relate to, or should I say I am sorry? I don't wish what we have been through on anyone. Yet, I know there are a lot of people that have had similar issues. I hope by being candid with our story others will avoid some of the same issues.

It's a scary thought that so many people just blindly trust someone because they happen to be a doctor.

I hope your mom is doing better now.

Yes, there are some great providers, but they are not always easy to find for sure.

Thank you for your comment!