Wednesday, July 16, 2014

And as for Me vs. Alzheimer's...

From now on you may just call me Nancy...
Reagan, that is.
By 2001 I had my plan mapped out.
I would "stand by my man" just like she stood by hers.
I would fiercely protect and defend him.
I would hire round the clock helpers if it became
necessary, but
I would never place him anywhere outside his home.
This was my plan for at least 5 years, 
and you best not have argued or tried to reason with me.
I took a vow to "have and to hold him,
for better or for worse, in sickness or in health,
until death do us part."

I had very valid reasons for being adamantly
opposed to "nursing homes."
My mother was physically mistreated in one
before she was 50 years old.
Jack's mother, who also had Alzheimer's,
died in one which was conveniently close
 but not ideal by a long shot.

 My noble plan worked fine in the beginning.
I protected him by never telling anyone.
I, therefore, didn't have to defend him
(except to that female neurologist in Dallas!)
I did often cover for him.
When he was obviously not remembering
something, I would say,
"You remember thus and such," and
he would usually go along with me.
I always got a table for 2 on our cruises, so
his inability to remember would not be exposed. 


Just a little aside here...
In September of 2003 we cruised through
the Panama Canal on the
Coral Princess.
Here we are at our first formal dinner.

Now this is, technically at least, a
"table for two by the windows."
(Their most popular request.)
That's a window right by us looking out on the
beautiful sea.
There is, however, a problem with this
particular table for two.

There are only inches between it and another
table for 2.
Might as well have been a table for 4!
It made for tense dinners for me, as
Jack neither remembered what he had said
nor what he had heard
the night before.
I was always relieved when Frank and Josephine
opted to dine elsewhere!


I was shocked to receive a phone call in 2002
from the chairman of the Board of Directors
at the bank where Jack served.
(NOT wonderful Skip Leffler--he was
I did not react appropriately, and it
was a lesson learned.
He told me "they" were worried about
Jack's memory.
(Actually it was he who was, not they.)
Instead of reacting calmly and matter-of-factly, I
poured out my heart.
Wrong person.  Wrong decision.
Be more careful, Nancy.

I don't remember how long Jack kept going to
the office daily.
I do remember a rare incident in 2003
when he came home after riding with someone
all day to look at the jobs in progress.
He told me, very sadly, that
he didn't think he could handle a job any more.
("Handle" meant oversee it from his office.)
That, however, was an unusual moment of clarity.
He usually thought he could still do
anything he could ever do.
Big gigantic problem!!!

Remember my quote about AD?
"If you've seen one case of Alzheimer's Disease...
you've seen one case of Alzheimer's Disease."
In our case,
we rarely talked about it.
He knew he had it, but he was going to beat it.
I knew he had it, but I was going to handle it.
Actually, neither was going to happen.



Friday, July 11, 2014

Alzheimer's and Jack's Work

In late 2000 construction began on the new
Stovall Construction, Inc.
office on Highway 287.
The superintendent?  Jack Stovall.
Now I don't know if he had ever actually been 
a superintendent on one of his jobs,
 but certainly not in many a year!

Looking back, I think...
"How could I not have seen God's hand in this?"
Jack had personally found the land for the building.
He had helped the architect with the design. 
It was "his baby."

it got him out of the office and exposed him to
 fewer opportunities to make obvious gaffes.
He seemed content to be there.
Other supers could stop by to "visit" and
casually lend a hand.

There were, however, a couple of telling incidents
on the construction site that I heard about
 (and probably many more that I didn't!)

Must have been early on...
Jack called the framing contractor one afternoon 
complaining bitterly that he hadn't sent
his employee out to the job as promised that day.
Uh oh.
The guy had been there that morning. 
And Jack had seen and talked to him.

As I sit here thinking about this something came
back to me.
I think he told me about the mistake with the
framer himself--with heart-breaking
sadness and frustration.
What a cruel disease.

Then one day Jack called Rick, his estimator,
at the old office asking him to locate
something in their warehouse and bring
it to the new building.
Rick had a terrible time finding whatever it was.
(The warehouse was a hoarder's dream.)
When he finally located it, he delivered it to Jack.
And Jack said, "I didn't ask for that."
Bless Rick's heart.
He was faithful and invaluable to Jack to the end.

The beautiful new office was complete in 
September, 2001.
Move in day was about one week after 9/11.
One thing I remember distinctly is that the events
of 9/11 didn't seem to have the same impact
on Jack that they had on the rest of us.
What a strange disease.

Here it is. 

 It's amazing that I can't remember more.
I'm sure Jay and Rob can.
They never complained to me, however.
I didn't start making notes until about 5 years in.
And I didn't make that many then.

The main focus of those first 5 years was
Jack did not want anyone to know.
Although I tried desperately to honor his wish,
I told him I thought it was a mistake.
Now I think I was wrong.

 "When people know you have Alzheimer's 
you become branded--it's like you have a
big "A" stamped on your forehead.
People treat you differently."

from Chicken Soup for the Soul
Living with Alzheimer's..." 

Wednesday, July 9, 2014

My Dietetic, Somewhat Healthy, Very Special Hot Dog

I used to fix these often for Madeline and Susannah.
But it's a lot of trouble just for me.
Slaving over a hot stove, making a mess type trouble.
So it was a big deal when I bought all the
ingredients and undertook to fix me one.

I start out by "grilling" my Hebrew National weiner
in a skillet.  They're better that way.
While I'm doing that I heat my little dab of
extra lean beaf chili in a small Pyrex dish
covered with a paper towel in the microwave.
It sort of explodes and gets chili all over the place
which I have to clean up before I can...
microwave the "Carb Smart" flour tortilla
between two paper towels misted with water.
(That makes it nice and soft.)

It's finally time to assemble.
Mustard on nice soft tortilla, then "grilled" weiner,
 then what's left from the chili explosion, then cheese.
Roll up and place in another damp paper towel and
microwave.  Beautiful.  Perfect.  Yum yum.

To go with my hot dog I had splurged and bought
myself diet IBC root beer in a bottle which I
had refrigerated.
I brought my hot dog and my drink into
the glass room and placed them on a TV tray and
got my playback of Judge Judy started!

The first bite was scrumptious!
But...the first drink was not cold enough.
I decided I had to get up and go to the kitchen to 
get some ice for my "beer."

People, do you sense what's coming?


I forgot to say.  It smelled really good, too.

I didn't even get real mad at her.
It was--after all--as usual--my fault!

Thursday, July 3, 2014

I Guess I Was Scammed Today

It happened about 4:30 this afternoon.
Susannah and I were traveling south on Bowen Road.
As we slowed to stop at the signal at Pleasant Ridge,
we saw a nice looking, neatly dressed man
on the sidewalk by the QT station
holding a cardboard sign which said,
"Stranded with children.
Need help with gas..." 
That's all I can remember that it said.

Our eyes traveled over to a woman holding a little girl
 in the parking lot of the station.
They also were neatly dressed.
The little girl even had a bow in her hair.

The only money I had was a $100 bill and a few 1's.
I'm thankful that Susannah was on a time schedule
(that's why I was driving her)
so I didn't really think of handing him the hundred.
I think that was a good thing.

 I dropped Susannah at home and headed right
back to the QT.
I was hoping they would still be there so I
could help.
Sure enough, they were.
I parked and got out and asked the man if
I could fill up his car for him.
He said "a guy" had already done that,
but nodded toward another lady who had stopped
and said something about her having given them
some cash, because that tank of gas
was not going to get them home
"in that thing."  "That thing" was a 
reasonable looking tan van.
I went in and had the hundred broken up
and gave them $50.
His matter-of-fact reaction aroused some
suspicion in me.

I asked them, "What happened?"
The man said they were from Spring, TX.
When they tried to use their credit card it was
rejected, making them suspect a case of 
stolen identity.

I left, made a big circle around, and came back by.
They were still there.
I didn't have any obligations myself, so I pulled
up into the Moore's lot and did a bit of surveillance.
I saw a person stop and send a child to take them
money.  I watched a few people hand them cash
from the windows of their cars. 

Susannah and I had felt so sorry for this nice
looking man having to beg.
"How humiliating for him," I had said.
Now I wasn't quite so sure. 

I guess what made me most suspicious was this:
With a tank full of gas and some cash,
why didn't they start for home so they could
get their credit card situation straightened out?

If this was a scam, it was unique and
well executed.
If it wasn't, I'm sorry for being suspicious.


Saturday, June 21, 2014

Our Medical Assault On Alzheimer's

What do we do first?
Well, he needs to go to our primary care doctor for starters.
Doesn't sound that complicated, but I managed 
to make it so.

I had not mentioned my suspicions to Jack, and
he was plenty sharp enough to pick up on
any special appointments or secretive
exchanges with the doctor at this point.
I desperately did not want him to think I was
going "behind his back." 
It's strange to me how I agonized over this because... 

It ended up being no big deal.
We always had our check-ups on the same day, 
one after the other.
Although my suspicions began in 2000,
our appoinments were not until March 29, 2001.
I don't know how, but I waited.  
I think I asked the doctor if I could be first when the
day finally came.
That way I could tell him of my suspicions about Jack.

He gave Jack the "I'm going to tell you three items
and ask you later what they are" test.
Jack remembered two out of three.
Then he had Jack count backward from 100 by 7's.
The doctor finally had to have him quit--
He couldn't keep up with Jack!

Nevertheless, he either felt the evidence strong enough
or took my word that there was a problem.
He sent us to a neurologist.

(All my efforts for secrecy seemed
 to have been unnecessary.
I don't recall his ever questioning me
about any of the initial appointments.)

The neurologist did four things. 
He sent us to Harris Hospital for psychometric testing.
This was heart breaking.
Jack couldn't do very well on the quite long test, 
and he was very aware that he wasn't.
It was humiliating for him. 
I wish we hadn't done it.  I already knew.

He ordered a blood test to determine if Jack carried
an ApoE4 gene, an indicator of AD possibility.

He ordered an MRI to determine if Jack had
suffered a stroke.

At some point, he prescribed Aricept.

The results of the psychometric testing were dismal.
The MRI showed no stroke.

About a month after the blood work, the nurse from the neurologist's office called to tell me:
"The results were 'positive'."
And I replied, "Positive for what?"
I was extremely upset.
I knew that AD can be determined
with certainty only at autopsy.
This made me angry but also further
rocked my world.

As it turned out, she should have said,
"Positive for ApoE4 genes."
Jack carried not one but two--
one from his mother, one from his father.
His mother had died at age 76 from
complications of AD.
His father had died of cancer when Jack was 12,
but we learned that AD was rampant in his family.

This was only the beginning of my
dissatisfaction with our neurologist.
In all subsequent visits, he did absolutely nothing
but ask me how Jack was doing.
When Namenda first began appearing in the news,
Susan and I were both on it.
The doctor?  He had never heard of it!
I broke the news to him!
I wrote a letter for him to sign prescribing Namenda and
was able to order it from Austria before it became
available in the U.S.

This dissatisfaction led me to ask a trusted doctor
in Dallas for a referral to a different neurologist.
He recommended a female doctor at UT Southwestern.
Remember when I told you about Bozo HERE?
Well, this referral definitely ended up
knocking Bozo (and me) flat.

She talked only to me as though Jack was not sitting
right there.
I'm not sure now whether he noticed or not,
but I certainly did.
She was the first to administer the old
"draw a clock" test.
When we returned for the test results, I did
not take him into her office with me.  I left him
sitting in the waiting room and told the doctor exactly why.
The test results were not good.
I'll never forget the pitiful clock drawn by 
neat, precise, perfectionist
Jack Stovall.
But after all this, she had no new ideas--no real help.
  We never returned.

 Instead, back to "Dr. Do Nothing."
At least he could write prescriptions.

I wanted to shout to these doctors:
"You just don't understand!
This is a very smart, honorable, refined gentleman who deserves to be treated with respect
even if he does have this insidious disease!
He's very important to a lot of people!
His is a unique case!"

But then...they all are.

Thursday, June 19, 2014

What Happened Next...

After the first indications of AD in Jack, as described
things progressed very slowly for a long time.
Jay worked with Jack every day.
I had immediately called and asked him if he had 
noticed his dad being forgetful.
He said, "Oh, yes!"
I stopped by to talk to Susan on July 10, 2000.
She had not suspected.
Jay told Terri.  Susan told Rob.
That is the extent of those who knew.
Five people.  And that's the way we kept it.
As usual, this "Cruisin' Mimi" had plans in the works.
Three days after talking to Susan, Jack and I 
took off on a cruise as scheduled to the Baltic.
It was July 13, 2000, my birthday. 

The trip began with a couple of days in London.
This was the scariest part, because we
had had a guide on our one previous visit.
This time I had planned for us to be on our own.
Additionally, we stayed at a hotel by the airport!
Why?  I have no idea.
Here we are riding the Gatwick Express!
We are the only two in this car!
(I set the camera to do an automatic shot.)

We are riding in at night to have fish and chips!
If you think this is nutty, just wait!
It gets worse.
Jack loved watches.  He had quite a collection.
I decided we needed to "tube it" to Greenwich,
where the mean time is set.
(This was after having to take the Gatwick Express 
in to London!)
It was a looonnng way.
We had to change trains--I don't remember
how many times--too many!--but we made it!
Here is Jack standing with one foot in the eastern
and one foot in the western hemisphere.

The line is the prime meridian, where 0 degrees
longitude is set.
Oh, dear.  I just remembered.  
We went to the Tower of London, too.
I think I dragged him to Greenwich after the Tower!
(After the train!)
Then...time to relax and let someone else
do the navigating!
I was relieved, and I'm sure Jack probably was!
Here we are on board the Splendour of the Seas.
I have always loved this picture.
And this is one of my favorites of all time,
taken by a passing stranger.

Here we are in front of The Admiralty in
St. Petersburg, Russia.

and in The Hermitage
(We were looking for Picassos!)

Want to see the best part of the trip?

Our welcome home!!! 

Several of you indicated that you were interested
in the way the disease progressed.
I will be pleased to share some more installments
 in the next few weeks.
If you are expecting, however, that our cruising 
came to an end,
let it be known that we took 14 (yes, fourteen)
more after the diagnosis!
"An Alzheimer's diagnosis is not the time to
grieve and miss out on the remaining years of life."
from Chicken Soup for the Soul
Living with Alzheimer's & Other Dementias
(This book was a gift to me from my cousin,
Sarah Lynn Festger.) 




Wednesday, June 11, 2014

My Most FAQ Regarding Alzheimer's

  "What made you suspect it might be Alzheimer's?"
This is #1 by a landslide.

The answer to this question may not be of real help
to anyone else.  The reason?
Because every case is unique.
The truest phrase I've heard is:
"If you've seen one case of Alzheimer's Disease,
you've seen...
one case of Alzheimer's Disease."

With Jack Stovall, there was little question.
In his world there was no shade of grey.
There was black, and there was white.

He was able to have details of multiple jobs so
ingrained in his mind that he could tell
you the exact financial status of each.

Jack never forgot anything, especially about
his beloved company.
His organizational skills were legendary.
It was not necessary for me to call him to remind
him of appointments.

June 29, 2000.

Our friends Skip and Becky Leffler had asked
us to do something really exciting!
Charlton Heston was coming to town on
behalf of the NRA, and they
invited us to share their table!
We were going to get to see "Moses" at the
Arlington Convention Center!

Even cool and collected Jack was his version of excited
 about this prospect.
He decided he would get a haircut for the occasion.
His appointment was in the afternoon.
As he left the barber shop he called me and said
that he was headed back to the office.
I said, "Do you really think you have time
to do that?"
And he said...
"Why wouldn't I?"
He had totally forgotten the reason for the hair cut. 
 That just didn't happen.
I was stunned.

A couple of weeks before there had been an incident
at church.
I wrote a check for something special
which we were going to give to Lonnie Diggs,
the church financial manager at the time.
We always saw Lonnie on Sunday morning,
as we worked the visitor's center.
 Jack put the check in his shirt pocket.
I noticed it missing later and asked him
if he had delivered the check, to which he replied,
 "What check?"
Lonnie didn't get it, and it was never
seen again.
 This had continued to puzzle me, but it became
 much more significant in my mind
after the C. Heston event.

I know these two incidents might easily be
explained away--if they hadn't happened to
Jack Stovall.

Subsequently there were many more occurrences--
becoming more and more obvious.
But this is where it all began...
One case of Alzheimer's Disease.


*Stay tuned
for what happened right after this!
(The picture is a hint!)