Total Pageviews

Wednesday, July 31, 2013

ASSuME - What kind of person are you? 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!

What kind of person am I?

I have to admit, when I signed up for the 30 day Ultimate Blog Challenge, I assumed that meant 30 posts.  Yeah, yeah, I know......I should not assUme!   After a really long day I came home, ready to relax.  When I opened my computer and saw that there were actually 31 days in this 30 day challenge, I nearly lost my mind, or at least what was left of it.

With nothing prepared and not feeling like reliving anything negative tonight, I made a quick decision that I wasn't going to do it.  I ranted to myself a little and cursed the month of July for having 31 days. How RUDE!

Then I thought, what kind of person would quit on the 31st day of a 31 day challenge?
What kind of person am I?

I am not a quitter, that's for sure!  

I have now dealt with this dreaded 31st day.  Although I am not feeling much like going on a journey tonight, I finally did have some thoughts I would like to share............

What kind of person are you?

Have you ever been a caregiver?  Of course, you have!  Think about it.
If you have ever had a child; a sick friend; or even a cold, you have been a caregiver!
Are you currently a caregiver?
  If you are, I don't need to offer you an example.
Don't think you will ever be a caregiver?
Wow, really?!  Not even a gold fish?

At some point in all our lives, we will need a caregiver.  This was never as clear to me as it was the day I broke my ankle in two places and dislocated my talus.  Being a caregiver might not always be a "bed of roses" , but needing a caregiver is equivalent to falling in a cactus patch!
No matter what kind of person you are, be kind; be compassionate, be prepared, and be humbled!

Tuesday, July 30, 2013

30- You might be a caregiver..... 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!

You might be a caregiver if.....

My mother has been discharged from a hospital or rehab setting at least five times over the past year and half (not including ER visits).  Each time I prayed I was equipped with the skills necessary to provide an adequate level of care.

Unable to locate a family caregiver "handbook", I turned to the internet to determine if I indeed had what it took to be a caregiver.    I decided that anybody who could identify with at least half of items on the list would qualify.  I sat with this list and wrote my thoughts and/or comments about each item on the list. (my thoughts/comments are in bold font).

Thank you to my friends from Senior Caregivers for sharing this list!

You might be a caregiver if...

1. Your new hobby is canceling credit cards, writing letters to collection agencies and
canceling numerous magazine subscriptions.
Mom had no credit cards to cancel, no bills had gone to collection and I like her magazines!

2. You spend 1/3 of vacation time backtracking as you look for eyeglasses, purse, hat, gloves and sweaters.
I spend 1/3 of ALL time backtracking as I look for eyeglasses, purse and puzzle books.

3. You place most of the bills in a folder labeled, "I will think about this tomorrow."
Tomorrow may be a little soon!

4. Going out to eat is a Big Mac or a Whooper.
 Or anything that can be picked up from a drive-thru window. Carry out or home delivery qualify as a fancy meal!

5. Your hands are missing fingers because he/she regularly "bites the hand that feeds him/her."
I still have at least 9 fingers.

6. An outing consists of going to get the mail.

7. You lobby your Congressional Rep. to have more hours added to the clock.
Why bother? They'd just want to tax it.

8. Taking care of yourself means...?
Well, I'm waiting???

9. Coffee, cola, and aspirin are food groups.
I don't drink coffee, but don't even tell me we are out of Pepsi! Ibuprofen doesn't upset my stomach as bad as aspirin does.

10. You never sort your loved ones socks because they seem to like to wear them
They have a pair just like them in the drawer!

11. Your loved one's wardrobe consists of sweats, a bathrobe, and socks, and for informal wear....
Sweats, bathrobe and socks can double for the informal wear.

12. Your lawn has been declared a wildlife refuge.
We have a lawn?

13. The pattern on the hood of your car is actually 2 year old cat paw prints.
Is that what that is?

14. Your house has more cobwebs than a 1950's 'B' horror movie.
I choose to call them fly traps.

15. Your friends know to call you six months in advance before they visit to give you time to clean up.
Who are we kidding? If we're really friends, I don't need to clean up!

16. At the mention of Social Security, you snarl, foam at the mouth and wish you had purchased that AK-47 when you could have afforded it.
How much is an AK-47?

17. Someone mentions neurologists, and you snarl, foam at the mouth and wish you had purchased that AK-47.
Seriously, how much IS an AK-47?

18. Fast food means shoveling in leftover tuna noodle surprise by the cold light of the fridge after the chores are done well past 10pm.
I do love tuna casserole!

19. When someone mentions illness, by the time you've finished speaking they mistake you for a neurologist.
I've been mistaken for a nurse and a therapist, but never a neurologist.

20. Crying is just another task that goes on your to do list.
Another thing I will never finish.

21. You can spot your loved one having a bad day, within 15 seconds, from 50 meters, in the dark, while its raining, with your back turned.
I do have good vision.

22. You often know more about how your loved one is doing than they do.
I'm just more willing to share the information.
30. The first place you look when your loved one has misplaced their shoes is the fridge.
I don't usually look that long. She has another pair. Besides, maybe the shoe will absorb some of that odor.

31. You've got the new, 24 hour, $19.99 a month unlimited Access to God Prayer Plan, and they are now telling you your limit has been reached.
I should get that notice any time!

32. Losing track of time, the day of the week, the year and your marbles seems normal.
You mean it's not?

33. Vacations are what you take just before you fall asleep.
I usually have to wait until I get to sleep.

34. You can spot an uncaring physician from 20 feet even before they open their mouths.
If something is in your eye, don't worry, it will only take 3 seconds once they do open their mouths.

35. When you and your loved one find a caring and understanding physician you first weep uncontrollably then fall on your knees and worship.
Weeping uncontrollably is part of the gig, but I'm really not worried about skinning my knees much.

36. When you see a person on the news who has had a blow to the head, you can instantly recognize the signs of a injury, while mouthing the newscaster's statement from the doctors, "...and the doctors say it was only a concussion and he should be as good as new..."
I thought the news was only 3 minutes long and only featured the weather!

37. Family get-togethers are when you go on-line to be with the people who understand.
I love my computer, my friends are in there!

38. The warning bells go off in your head if your loved one doesn't say anything about their day and you anxiously ask "What's wrong?"
And then cringe while you wait for the answer!

39. When going out it takes two hours to just get ready.
I'm jealous. Only two hours! Really?

40. If you read this far you must be a caregiver!
I must be a caregiver!

Monday, July 29, 2013

29 - Highly Unlikely 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!

Highly Unlikely

 "Highly unlikely".  That would have been my response if anybody would have asked me what the chances were that my mother would ever have back surgery.  "Highly unlikely" would have been my answer less than two weeks ago.

It was ironic really.  "Highly unlikely" had become a phrase that would provoke one of two responses from me, depending on the context and/or deliverer.

If the phrase was delivered by my brother or one of my sisters, the context would most likely be in the form of mocking humor.  "Do you have a shovel I can borrow?", as they are looking at the shovel would require a reply of: "That would behighly unlikely".  One of those "inside jokes" that no one else gets.  Well, they might get it, but it would be highly unlikely!

However, the same phrase delivered by a health care provider in regards to my mothers health, would cause me severe anxiety and sheer panic.  "That would be highly unlikely", seemed to be a rehearsed phrase by the many doctors who had provided medical care for my mother over the past year.  It also seemed to be almost a guarantee that things were likely.

It had been "highly unlikely" moms pain had been caused by anything other than muscle spasms or her rheumatoid, until they diagnosed a compression fracture.

They needed to run some tests, but it would be "highly unlikely" they would find anything to prevent the kyphoplasty procedure they assured us should "provide pretty quick relief" from her back pain. They did find something to stop the procedure, a staph infection.

"Somethings wrong with her knee", I said over and over again.  It was "highly unlikely" the problem with her knee was anything other than her severe RA, even though it was an artificial joint.  The knee was infected with staph.

"Will the staph infection attack the compromised spine where the fracture is?", I was throwing out theories.  "That would be highly unlikely", moms RA doctor told me.  He sounded sure and convincing as he told me it wouldn't make sense, there "wasn't significant blood flow" to that area.  They would later aspirate a fluid sack infected with the staph - right by the fracture at L1.

If it was highly unlikely, mom proved them wrong.

"What about referring her to someone who specialized in the spine?", I asked for referrals constantly.  My requests were dismissed again and again because it would be "highly unlikely" they would be able to help.  I was told an Orthopaedic spine specialist would just want to do surgery and it was "highly unlikely" mom could survive a major surgery.

Mom was 76 years old and up until two weeks ago she was absolutely opposed to back surgery.  Now we were waiting for a call from the spine clinic to schedule an eight hour surgery, requiring two surgeons.  I couldn't believe mom had agreed so readily.

Had the increased pain changed her mind?  Had she considered how "highly unlikely" it would be for her to live through this surgery?

"I felt so comfortable with her", mom later told me.

It had taken us nearly six months to get a referral.  We spent another four months trying to coordinate an appointment.  Each way we drove five hours to get to the clinic.

Yet, it took less than an hour for mom to decide she could trust this woman with her life.

I wonder if she was as scared as I was.

That would be highly unlikely, don't you think?

Sunday, July 28, 2013

28 - We can't afford any more mistakes! 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!

We can't afford any more mistakes!

Mom seemed distracted on our way to her appointment with the spine specialist.  "What if this doctor wants to do surgery?", mom broke the silence.  She had told me many times that she would never have back surgery.  She had heard too many stories about people being in more pain after surgery than they were before.  Mom was echoing my own thoughts.  "I don't think I could live very long if the pain were any worse", she said, "I wouldn't want to".

"You don't have to do anything you don't want to, mom, it's your choice", I told her with a lump in my
throat, "We've come this far, let's wait and see what the doctor says".  I wanted to believe there was still hope.  I had to believe.

"Can you believe this?", mom asked me as we got off the elevator.  I knew what she was talking about immediately.  We were both amazed that doctors here used the same elevators as patients.  They even chatted with us like we weren't beneath them.  That was something we weren't accustomed to.

Within minutes of our arrival, moms name was called.  We were ushered to an exam room where moms vitals were checked.  "The doctor will be with you shortly", we were informed in a cheery voice.  Was everyone here this happy?  Before I could even process the thought we were joined by a smiling Physicians Assistant.  It seemed everyone was this happy!

The P.A. was friendly and seemed genuinely interested in mom.  He asked mom all the "usual" questions.  I remember thinking how impressed I was that he actually seemed to be listening to moms
answers.  Was it even possible we had found someplace that could help mom, someplace that wanted to help her?

"Can you stand for an x-ray?", the PA asked mom.  I quickly pulled moms most recent films from her most recent hospitalization, hoping I could save her the pain of yet another x-ray.  "We'll take a look, but we'll still need to get a new one today", he told me as he loaded the disc in to the computer.

"Do I have to?, mom wanted to know.

"Getting an x-ray doesn't mean you've agreed to surgery.  They probably don't even know if you need surgery without looking at an x-ray", I wondered if I sounded convincing.  At this point I felt surgery may be the only option.  "Do you want me to go with you", I asked.

It made me angry how mom had been treated by the doctors at home. Why hadn't they listened?  People get hurt when no one listens, I thought hatefully.

Wow, I thought, That was quick!  Radiology would take mom right away and she should be back in "about 15 minutes".  I wondered if I looked as surprised as I felt or as astounded as mom sounded as she echoed my thoughts.  "Wow!", mom exclaimed, "That was quick".

As I prepared the dose of liquid morphine mom requested before she went, I cautioned the technician about moms pain, her bad knee and her very brittle bones.  "I'm sorry, I'm sure you know how to do your job," I apologized.  I had taken to giving everybody who came in contact with us explicit directions on her care, I couldn't help myself.

Luckily, I didn't have time to work myself in to much of a frenzy.

No sooner than mom had been wheeled off to x-ray, the surgeon appeared.  She said she was sorry she was running a little late and unfortunately had an appointment at another clinic across town and didn't know if mom would be done in x-ray before she had to leave.

My heart sunk.  We couldn't leave here without having some kind of answers, it had taken too long to get here and we'd come too far.  I had to know if there was anything she could do to relieve moms pain. I pointed to the pictures of moms crooked spine displayed on the computer.  "Oh, good.  This will help", and she thanked me for bringing them.

I had spent a good deal of time researching this woman's outstanding credentials and was amazed at how comfortable I felt babbling like an idiot in the presence of this nationally accredited surgeon as she studied moms previous x-rays and MRI's.

Maybe it wasn't comfort I was feeling as much as it was desperation.  Either way, I continued to tell her stories of the indignities my mother had suffered at the hands of medical professionals charged with
her care.  I told her how long we had begged for them to refer mom to someone who might be more familiar with her many afflictions.  Was she even listening?  I couldn't tell.

I wondered if she was just ignoring my presence, blatantly dismissing my concerns or maybe she was thinking I was a raving lunatic.  I was tired of being dismissed.  I was just getting worked up to tell her how sick I was of being treated like I didn't exist when she turned and looked at me incredulously.  Uh-oh!

"There's no x-ray of her upper spine", the surgeon wanted to know why.  Of course I had no idea why so much
had happened, or hadn't happened and I told her so.  As she scrolled through the films that were available, the surgeon demanded, "Who's taking care of her knee."  I hadn't even realized there were films of her knee on the disc I had given her.  Had she even been listening to me?, I wondered.

I gave the spine specialist the name of the Orthopaedic doctor mom had been seeing at home for her knee.  Before I could stop myself, I was also telling her of his assessment and my ever growing lack of confidence in him.

I told her about scheduling an appointment with one of her associates and the prior appointments we had been forced to cancel due to moms numerous hospitalizations.  "Unfortunately, he doesn't have an opening until February", before I finished her hand was on the door knob.

She seemed disgusted.  "That knee is NOT fine", she seemed almost angry, "Do you mind if I bring someone else in?"  Assuming she meant she could get us an appointment before February, I readily agreed.  I had been worrying about that knee night and day.  As the doctor slipped out the door, I panicked.  Was she coming back?

Wait!  Don't leave.  What about her back?  I started crying and couldn't stop.

On one hand, I didn't think it would do much good, at this point, to fix her knee if we couldn't control the pain in her back.  With that horrible pain in her back, I couldn't imagine how she could handle the required rehabilitation after a knee surgery.

On the other hand, if mom needed surgery on her spine, I wasn't sure her knee was stable enough to carry her through what was sure to be a long rehabilitation period.  Besides, mom already said she didn't want to have back surgery.

I was amusing myself thinking maybe another hand would help when the door opened.

The surgeon returned and told me the knee specialist would try to take a look at the films, but it was likely they would need more x-rays.  She was sharing her impression of the condition of moms spine when there was a knock at the door.  We were joined by another man.  I didn't have to wonder who he was for long.

After quick introductions, I watched as the films of moms knee were being displayed.  I listened as the spine surgeon recounted our unbelievable story to the knee specialist.  I wasn't sure she had even been listening to me before and was stunned at the accuracy she was recalling every detail I had told her.

I was thinking how crazy it all sounded.  It indeed sounded like a fictional thriller derived from a very delusional imagination.  They probably just thought I was crazy, I sure would.  I wish the voices in my head would just take a break already!

Maybe I was in denial.  Maybe there was nothing that could be done to ease my mothers pain. Maybe it was time to give up this plight.  Maybe I should just gather mom from x-ray and we should go home.  I felt dizzy.  I felt sick.  I felt helpless.

Had my resistance to the truth caused mom more pain?  Should I have just accepted what I was told by doctors who didn't seem to care, one way or the other, about my mother.  I didn't want to cause her more pain and undue stress.  "......they told her to call hospice.....the poor thing has to be in incredible pain........", the surgeon wasn't talking to me, but I figured I had better try to focus.

I thought mom should be listening too.  I wondered how much longer she would be.  I hoped she was OK.

She seemed more than OK when she returned.  "They're amazing", mom sounded almost giddy as her voice interrupted my thoughts as well as the conversation going on between the two surgeons.  I watched in awe as my mom hugged the technician and then thanked her for being so gentle.  She didn't look stressed now, I observed.

Seemingly unaware that we were not alone in the room, mom began to tell me why they were so amazing.  "They were so patient and they didn't hurt me at all", she told me excitedly, "they acted like I was important".  I was pleased mom had been treated with the respect and dignity she deserved.  These people seemed to really care, even if they couldn't help.

The knee specialist excused himself after agreeing to take a closer look at moms knee "in a few weeks".  "Thank you", I was shaking his hand and searching his eyes.  The compassion I saw in those eyes brought tears to my own eyes.

As I wiped my eyes and blew my nose, I tuned in to the conversation mom was now having with the spine specialist. She would also make sure she worked us in for an appointment "in a couple weeks".

They would need more x-rays; an MRI; and a CT, before they attempted surgery, the surgeon didn't feel the films we had from previous testing were adequate.  She wanted them done somewhere that she could depend on the integrity.  Did I miss something?  Had mom agreed to this?

"What if mom doesn't want to have surgery", I was nearly hyperventilating as I replayed moms insistence that she would never have back surgery.  Had I made a terrible mistake bringing her here?

We'd made enough mistakes.

We couldn't afford any more mistakes.

Saturday, July 27, 2013

27 - We didn't have a choice 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!

We didn't have a choice

November 19, 2012 was fast approaching and I still was not at all sure, between moms constant pain and the weather, we would be able to make this trip.  Mom needed to see this spine specialist.
We had to make this trip, we didn't have a choice.

Moms morphine had been increased to a point that made me wonder how she could even make it to the car, let alone tolerate the 5+/- hours it would take to reach our destination.  Despite the recent increase in the morphine, she was still having to take breakthrough pain medication as often as once ever HOUR.  She hurt all the time. This was likely going to be a long trip, but we didn't have a choice.

The drive time would likely be increased due to the weather.   I know we need the moisture, but do we have to always get a big dose of it when I need to travel the mountains?  I was no stranger to driving the passes in a snow storm and I know it can get BAD up there.  Getting stuck on the pass with mom in her current condition was a scary thought.  Regardless, we didn't have a choice.

For several days before moms appointments I closely monitored both the weather channel and mom. We had to make it over those mountains and we needed to get there soon.  I didn't think we had a choice.

I watched road and weather reports constantly, knowing there was nothing I could do to control the
weather.  As bad as the weather seemed to be this season, it didn't seem near as bad as moms pain or ever evolving other health issues.  Unfortunately, I can't control moms pain either.  I hate not being in control.  But I didn't have a choice.

I had been mulling over an idea that my uncle had suggested a few days before.  He was right, I could feel it in my gut.  Weather be damned. We had to make that trip.  We had to see that spine specialist.  We didn't have a choice.

What if mom lived to be 100+/-, as her aunts had?  I had to believe that God would determine when it was time to surrender.  He will let us know when it's time to just "enjoy the time we have left".  As I knew from my fathers death, this moment may be "the time we have left".

"Mom, I was thinking maybe we should get over the mountains sooner than later, the weather may not get much better", I hoped she couldn't see how scared I was as I continued, "we don't want to miss those appointments."  I started talking again before she had a chance to reply,  "I don't know if the weather is going to get any better and it would be better to get as far as we can as quickly as possible".  I couldn't seem to stop validating my reasoning, "If we get their early we'll have some time to shop."  Maybe if we broke the trip up in to two 2 1/2 hours trips it would be easier on her, I thought.  "We'll get as far as we can.  If the weather gets too bad we can stop & get a room, it will be an adventure", I was avoiding eye contact.  I still wonder if she knew what I was really thinking.  We didn't have a choice.

I think she had many of the same fears as I did.  Of course, she didn't want me to know she was scared either.  It wasn't that she was scared of dying, she wasn't.  She was afraid of living in the pain she was in or worse. "I was thinking the same thing", mom said as she opened her jewelry box.
 Echoing my thoughts, mom said, "I don't think we have a choice".

She was already deciding what "else" should go in the already stuffed car.  I had packed, unpacked and repacked the car more than once over the last couple days as we kept adding things "we might need". Turns out, when mom & I travel together, we "might need" anything from swim suits to parkas no matter what our travel plans included.  Some day I'm going to figure out how to trim down our load.

The swim suits were a nice thought.  Mom loved to swim.  If we got in the pool maybe the buoyancy would relieve some of the pain in her back.  I was sure it would relieve some of the ever present pain caused by her severe rheumatoid arthritis.  While I was certain somehow I could help her get in to the pool, the images that flashed through my mind didn't bolster my faith in my ability to get her out!  We probably didn't need the suits.  See, I already have a plan to lighten the time.

With the tank full; the car stuffed; snacks handy; and mom drugged, the two of us set off in a snow storm in search of (at the very least) compassionate medical care for mom.  We were going to hope
for the best and prepare for the worst.  We didn't have a choice.

I didn't think I was delusional.  I knew there was a very real possibility we were wasting precious time, that our quest was just a diversion, maybe even an illusion.  Could we find a compassionate doctor who would see mom as a person?  Someone who would treat her like she was a valuable member of society? Or, maybe someone who would at least not treat her like she was just an old lady who was wasting their time and draining precious resources.  We had to try.  We didn't have a choice.

Was it even possible that we would be lucky enough to at least find pain relief for mom without so many drugs?  It wasn't like mom was getting a tremendous amount of relief with the drugs anyway, so what did we have to lose?  Pain?  We really didn't have a choice.

My imagination decided to take me to a place that mom had no pain. In my minds eye we went a lot of places; had some fun and enjoyed life like we had before.  As always, my imagination has to show me both sides of the fence.

What if we didn't find what we were looking for?  What if mom is destined to suffer?  What if these doctors agreed with the doctors at home?  What if they don't?  What if I were just delusional?  What if the weather prevented us from finding out?

We've got to find out!

Do we have a choice?

Friday, July 26, 2013

26 - Excruciating, constant and increasing. 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!

Excruciating, constant and increasing

Mom seemed to be responding well to the oral antibiotic they had started her on during her last hospitalization.  It seemed they had finally stumbled on to the right medication to at least combat the nasty staph infection, which resulted in bactermia, that had threatened moms life so many times over the past 10 months.

However, with a number of assumed diagnosis including (but not limited to): scoliosis; ankylosing spondylitis; osteomyelitis; and others, the pain in moms spine was still excruciating, constant and increasing in intensity.

I felt certain without an increase in her pain medication she would likely not be able to make the trip that could save her life.  As I dialed the number I had been given for Palliative Care, I realized how thankful I was mom had agreed to participate in their Transitions program.  I was told they would be a "liaison" between us and moms Primary Care Provider and would ensure moms pain was adequately managed. This sounded good.  We desperately needed a liaison.  It actually is a very interesting concept,

Unfortunately it was only partially effective.  To be fully effective it would require the cooperation of moms primary care physician.  He was part of the equation whether I liked it or not.

I tried to follow the rules, I really did.  I would first call moms primary care doctors office (as instructed), where I would leave a very detailed message with his staff about moms pain level and other symptoms.  Then I would wait at least most of one day (if not 2 or 3 full days) before I would get a call back.  "The doctor will have to see her before he is comfortable increasing the morphine", was what I was generally told.  I didn't have a problem with him seeing her first.  I did have a problem with waiting until they could "work her in", which could be anywhere from several days to several weeks.  I remember thinking (or maybe saying): "Oh, well, as long as he's comfortable", why should we worry about mom?  I wasn't certain, from day to day, if mom had "a few more days.

It was not quite the middle of the month and I had already called the Palliative Care Transitions team more than once since bringing mom home
from the hospital around the first of November 2012 and .   Mom's tolerance to the morphine she was taking for pain control seemed to increase every few days, requiring yet another increase in the dosage.  I didn't like the idea of her being on that much morphine, but it was better that watching her suffer with the incredible pain in her spine.

Each time the Palliative Care doctor would recommend increasing the dose.  They would immediately forward the recommendation to moms PC.  More times than not it would still be a battle to actually get the prescription necessary to accommodate that increase from the Primary Care Provider.  After waiting several hours I would call the primary care doctors office to be told "the message had been left for the doctor and we'll call you back as soon as he's had a chance to review it".  That was fair enough - Any idea WHEN WILL THAT BE?

During one of those, oh so special, conversations I was told to cut a pill in half so that I would have the correct dose "since I had so many" from the last increase, they didn't think we needed any more. SERIOUSLY?  It says right on the prescription bottle to not "cut; break; or chew" this medication I explained.  "It does?", the nurse sounded surprised.

They would have to get another message to the doctor and "get back to me".  Talk about a vicious cycle!  This was only the first step in that cycle.

Once we finally had the primary care doctors OK, the second step would begin.  I know the "rules" for dispensing narcotics and I am perfectly fine with driving across town (after we finally received word the prescription was ready) to sign for and pick up the prescription, driving to the pharmacy to drop it off and returning to pick it up when it was ready.

Going through the circus act of actually getting the "approval" from
the doctor and then waiting until he had time to sign the prescription, usually left me feeling a little cranky - getting to the office to pick up the prescription to find out it either hadn't yet been signed by the doctor or was the wrong dosage or quantity just made me mad.  It was particularly frustrating when I was trying to get "all my ducks in a row" in order to take mom to appointments that would take us away from home for several days or more.

"It's like they think you are taking my pills", mom said to me during one of my rants about how frustrating it was and how much less time it would take to get ready to go if her doctor would just join the team all ready.  I had enough to take care of with mom needing more and more help just to get through the day.

It hadn't really occurred to me that he would think I was a drug addict.  "I don't know if they really think that, mom.", of course I didn't really know what he thought.  How could I?  He barely acknowledged my presence.  I also didn't really care what he thought about me personally.

Since it was (in my opinion) imperative that I took mom on this winter road trip so she could be seen by several specialists in several disciplines and I was having trouble getting any cooperation from the PCP, I called for a "house call" from the Palliative Care doctor (yes, they make house calls).  After evaluating mom and looking over the records I kept for EVERY dose of pain medicine dispensed (in addition to my spreadsheet of all the medications), she called the PCP to recommend the increased dosage and to hopefully facilitate us actually getting the prescription before we were due to leave in a few days.

After being connected to the Primary Care doctor, the Palliative Care doctor advised him of moms current condition; pain level; etc., and made the recommendation for the increase in pain medication.  "No", I heard her say.  "No, I don't believe that is the case here at all", she continued, "If I did, we
would be having a whole different conversation".  When she disconnected the phone she looked at mom and then at me, "Don't be offended by that".  He really had thought I was taking her drugs!

The Palliative Care doctor spent a good deal of time telling us of the reports that had recently come out regarding care givers (and other family members) stealing prescription pain medication.  Morphine was at the top of the list.  "So, please try to understand he is just trying to be diligent", I think she knew it was sounding kind of hollow about then.

I felt outraged that after all this time he had barely spoke to me or even acknowledged my presence during moms many months of hospitalizations or when I accompanied mom to her appointments.  Her PCP had "jumped" to the conclusion that I was a drug addict.  I understand the need for diligence, I really do.  However, you can tell a lot about a person by actually talking and listening to them.  He had done neither.

I really hoped by taking mom away from here we would find a doctor that would have basic communication skills.  Someone with compassion.  Someone with empathy.  Someone with humanity.

I knew they existed.  Don't they?  They had to!  Didn't they?

Her first appointment this trip was scheduled for November 19, 2012.  I was just waiting for a break in the weather before we would resume our search for a doctor that could help mom.  Or, maybe a doctor that would, if they could might be a better way to put it.

I hoped they could help mom.  I have to keep reminding myself that I might not always like the answers we get.  At least if we had an answer (even if it wasn't the one we wanted), we could process the information and figure out what our next move was.

What if we get an answer we don't like?  Well, I guess I'd rather have an answer I don't like than an assumption I don't like.  At least then we can figure out our next move.

What would our next move be?

I am not a Chess player, but I think I would rather be a queen than a pawn.

Will there be any moves left?

Please "like" my FB fan page:
Earlier posts can be viewed at