A Trip to the Neurologist! or - What's the Diagnosis, Doc?

Today we went to see the doctor.

We went to see a good doctor.

We went to see the Neurologist!  We went to see a neurologist who knew what he was talking about with Lewy Body Dementia.  And we found him at Portland Adventist Medical Center.  Brent Burroughs, MD gave me solace.

I picked Mom up, and she'd been waiting.  I'd already collected the information on her medications, etc, from Mike, the leader of the cottages.  He also asked me to not allow Mom to use the keypad to go out anymore.  See, she's now under hourly supervision to ensure she doesn't try to tip-toe her way out.

We found the Neurology Department and walked in.  My goodness there were a lot of forms to fill out!  Thank goodness I had the presence of mind, earlier in the year, to download the Family Medical History app for my phone and computer.    I had already entered all the information necessary - including her insurance, blood type, medications, allergies, etc., so that was right in front of me!  It also partners with an ICE app (In Case of Emergency) that is on my phone, and  can be used in those unmentionable situations we try to avoid.

We went into the room with the nurse, who took Mom's blood pressure.  She hated that!  It really seems to hurt her arms!

As we waited in the interim, I walked over to the chart and began explaining, in a condensed manner,  to Mom why we were there.  After I finished, she looked at me and said, "You know that gardening lady needs a couple of green watering cans."

I couldn't believe that my mother was now one of those people - at least for the moment.

Then came the doc.  Nice guy.

   "So, why are you here?" he asked.

   Mom decided it best for her to speak.  "Well, you see my hands used to break out, but because of the cream I'm using they're getting better."

He nodded then looked at me.

"We came because I need to know if we're still working with LBD, and if we are, then are we on the right track."

"What leads you to believe she has LBD?"

"Well, Highline in Tukwila diagnosed her a year ago April, and I've been doing my reading and some research on it, and it fits.  I just need to be sure we're doing all we can at this time.  Maybe scans?"  This last question was with hope, but after he explained that while 'those with great means' might pay out of pocket for this, it would not be easily affordable for the other 95%.  I was a little disappointed.

"She also has tremors, and then there are the hallucinations."

He asked about these, and we spoke through Mom's vigorous protests and demands we stop maligning her reputation.  I reminded her about seeing my brother while she napped the other day.

"What?  That never happened.  See? You're putting words in my mouth!"


He understood.  Fortunately, he seemed relieved I knew something about the ailment.

He began asking Mom questions and she was off at the races!  She had a lovely time describing Port Angeles, Sequim, her life, and other titbits of information which mostly had nothing to do with the questions.

He took out some sheets and began quizzing her with pictures.  She couldn't see all the images that to me were obvious.  But overall, she did fine - she did see some and created stories around them.

Then there were numbers, and memory tests.  He asked her to list off as many animals as she could in a minute - she listed about 18.

He then conducted some coordination tests.  She was having a blast!  She was complaining about his demands, but I could see she loved the attention!  She giggled as he took out the reflex hammer and bopped her a few times.  He had her fingers clapping while the other arm was engaged with his moving it.

The brain is amazing - isn't it?  It allows us to do so much and we use it so little....

He did tell us that the only real way to know if she had LBD was through autopsy.  Well, that was a shocker - not that I didn't already know this, but that he said it right in front of Mother!
"What did he say?" she asked.
"He said the only way they could know was through brain surgery," I said.
"Oh.  No, you can't do that!" she laughed.

He saw the tremors, we discussed the hallucinations, he looked at the cognitive pieces.  He concluded that we were on the right track.  He did say that the seroquel might need to be upped in dosage, though, eventually.

One thing that surprised me, though, was that Haldol, which was used primarily with AD and brought out the Parkinson's in LBD patients, was pretty much the same thing as seroquel, but different, if you catch my drift.

I was a bit anxious as we left and Mother was in a happy mood, talking about what a wonderful doctor we'd seen, and how he seemed rather intelligent.  I was a little worried that our talk about the hallucinations would carry over into lunch, as Mom is well-known to hang on to grudges for decades (centuries if that were possible!).  But she'd completely forgotten!

This was not a good sign.

I'm not really sure what we really accomplished, except validation.   He also brought up End of Life issues, but it wasn't the time.

Mom seems to be declining quickly, but I'm not sure why.  She's struggling for the right words, but she's never short on them.   She's more confused and her mind isn't latching on to much any longer (except secret key codes for the exits and entrances to the center...Hmmmmm).

Hopefully, I'll have more information on LBD later this week.  Now I need to do some mulling. 

The Week Ending 5/25/2014

It's been a week!

Mom had her crown put back on, this time quite securely; however, this morning I was met with the corpse of another crown (not sure if it's the same one - it looks different, and it seems as though it shall find itself buried!).  So, another call to Dr. Handick will take place Tuesday.

This morning found Mother quite rosy and chipper, but unsettled and anxious.  It would appear that due to the "Boil Water Notice" that Portland underwent Friday through Saturday meant that her water was shut off for the weekend in her apartment.  Although she seemed in good spirit, this was out of routine, and it was brooding under her skin.

Although she'd already had her hand cream put on, she demanded more; standing over the med aid who was on the phone with a family member for another resident.  Mom snooped at what was on the printer and picked up a  letter - she handed it to me and asked me what I knew about it (as if!).  It was addressed to me, care of Nadya in Port Angeles.  I told her I'd mail it, and she smiled.

Once she was able to get her hand cream, we went into her room, and she began to ready herself for Mass.  They had given her bottled water, but her bottle was dry, so I found a tap that worked and brought her more, discovering more water in her refrigerator...."Yes, I knew I had more, but I wanted that one filled," she exclaimed.

After calling one staff "The Animal", and making statements about the incompetency of the others (this meant they weren't fully focused on what she wanted when she demanded it), I was able to spirit her out of the building and into the car.

"This weekend, I believe it's time for you and your brothers to make plans to get me out of here.  I don't care where I go, just anywhere I'm not locked in", she stated matter-of-factly.

"I get where you're coming from," I replied.  This seemed to appease her.

"You know, you had better stop barking orders at me.  It's not your place to bark orders," she stated after a little silence.
  "When did I bark orders?"
   " When you told me we needed to leave."
  "I simply asked you to brush your teeth so we could go."
  "That's what I'm talking about.  That's not your place."
  "Did you want to be late?"
  "We have plenty of time."
  "We're 15 minutes late."
  "Oh.  Why didn't you tell me it began at 10.  When did it change to 10 from 10:30?"
  "Never.  It's always been 10."
  "Stop trying to confuse me!"
Then silence...I stifled a chuckle, as this happened well before her condition, as well.

We had a nice chat about the trees, yards, homes, people we passed as we drove down Cesar Chavez, then down across 33rd Avenue to the Irvington District, where the church is.

She seemed alert and aware, but that was a facade.  She kept saying things that demonstrated she was a little confused.  "Why are we parking so far from the church?" she inquired.

"We always park here.  In fact, we're closer today than we have been in the past."
"But it's several blocks!"
"No, it's right across from the stop sign you see up ahead."
"Oh, well, I knew that."

We went to Jean's house after Mass, and I poured both Mom and Jean a glass of Chardonnay.  Mom wasn't happy with the 1/2 glass rule, so I poured it to the rim.  She did a little bounce in her chair to show how happy this made her.

The conversation was about how Mother's Grandparents and other relatives had come over in the 15th century to America.  Jean questioned her about this, and how it could be they preceded Columbus.  Mom contemplated this and then told Jean she meant the 1500's.   I just listened with awe.  I wanted to see how Jean handled this.  She did so with style.

Later, Mom was discussing her grandmother in New York.  "I should probably write her - I believe she's still alive, you know.  She was a very hardy woman."
 "Mom, she'd be over 130 years old."
  "That's right.  She's hardy."
Jean looked at me and smiled.

We had a good lunch of pizza and asparagus, wine (for them), and then Mom had two bowls of ice cream with strawberries.  She was in heaven, and the second glass of wine was working its magic - that and her medications I gave her.

After she took a short nap on Jean

's couch, we left.

I knew she needed more little oranges (she loves the Cuties) and soda, but she told me not to worry about it.  She told me that all the soda I'd bought for her had been slowly stolen, as had the oranges.  I began to tell her she had consumed it, but then stopped, realizing this was a battle that couldn't be.  So, I told her we'd skip the store.

She asked if she could go to the eye doctor to see exactly where in her eyes she should be placing the eye drops.  I told her no doctor would be working today, except the hospital, and we didn't need that wait or expense.  This appeased her.  The truth?  The doctors all told her it didn't matter.  She's not buying that.  <sigh>

I dropped her off and she wanted to know why we hadn't gone to the store.  So, I told her I was tired (truth!!!) and I would go later and see her during the week.  Appeasement!!!!

Later, I arrived home and read the letter  (I will transcribe the main portions for you):
                                                                                      May 22, 2014

Dear Tony,
                Since I'm planning on returning home near the above date, I thought you'd want to know.  This has been a strange year but some good things!  That includes getting my furniture back to our house there.  Your dad will need your assistance and that of your brothers - as much as possible.  If you could call my brother, I think his son will help you.  That's primarily a kind of simple problem.
          The book being reviewed is Oxygen by Carol Cassella.  I'll look for a used copy and maybe you'd like one too.  Please let --------know too.  I'm sure she'll be happy to see you.
          Please let your brothers know of the plan.  I probably wont' be completely vexed for a week or 2 after the date.  It will be wonderful to be home and near you and your brothers. 
    If you can find a used copy, it'd be fine.  
When we leave here - it's for good.
    Come see us when you can - 
    I hope soon -
     It'll be wonderful when contact by phone, letter or best in person, will be the norm.
Much love,
Mother and Dad.
PS. - - - - - 
     If you can find used books, it'd be great. 
     Love you, miss you and look forward to seeing you after a nice trip.
                                                                       
There's more, but that's private.

This demonstrates where she is at this time.  It's the most confused letter I've received or read from her to anyone (if the letters come back, and I'm not able to locate an address, then I put them aside...I've read one or two, and received a couple of my own via St. A's, when I pick up her mail.)

I do believe we may have come further into the foyer of the dementia, and are looking for which door will be the first to enter....

I make the appointment with the neurologist Tuesday.  Hopefully, this will be a way to find guidance.