Dementia 102

In the beginning.... To those of you who are just entering into this journey....while you are in your frantic search for knowledge stage....I’d like to recommend a few pieces of reading material.

36 Hour Day - Nancy Mace and Peter Rabins

My Journey into Alzheimer’s Disease - A true story by Robert Davis

Seven Stages of Grief - Elizabeth Kubler-Ross

Still Alice - Lisa Genova

Alzheimer Action Plan - P. Murali Doraiswamy M.D., Lisa Gwyther M.S.W. and Tina Adler

Then, after you are completely saturated with knowledge until you can’t read anymore.   Sob!   Then get out your Bible because this is much greater than you.

Been Paintin"

Meet Molly and Molly’s parents.  This is the underpainting and sketch in acrylic.  I’ll lay in the oils once the underpainting is completed.  They are going in someone’s family room when they are finished.  Moo!  They are a work in progress.  (Aren’t we all!)  It’s mind boggling to me how several commissions have come in during the last two weeks. (Since the fall of the wall.)  OUT OF THE BLUE.  Seven new painting requests; some very, very large.  Some small.  It’s exhilarating and I’m speechless.  I really want to jump up and down with glee. DANCE  like those little “Glee” dancers.....SING like those little “Glee” singers!  In fact, I feel myself getting all giddy right now.  Can you feel it?

Things are working out pretty well with all of the day helpers that are coming.  It took quite a while (years) to find the right ones who “clicked” with Jerry.  Now, I have a couple of hours of respite every day.  (Accept Saturday and Sunday.  That’s when recorded football games come in handy.)  I can’t tell you how “normal” I’m beginning to feel.  It’s the first time, I’ve  felt comfortable that Jerry is happy and not feeling like he’s being shoved aside.  Every helper brings their own special uniqueness to the table and Jerry is becoming more and more attached to each one.  The newest, Sarah, is so sweet and gentle.  She’s the only female in the bunch.  Her upbeat but quiet, laid back style, makes Jerry feel relaxed.  I detect a little “stress free” feeling that comes from him because he doesn’t feel like he has to perform.  She pushes gently.  The guys all have their ways of challenging Jerry, but in a manly yet compassionate way.

Respite, although, I resisted it for a long time, brings a completely new attitude  to the game.  I suppose like a football player who needs to rest on the bench for a little while, so he can regain his strength to complete the game.  I resisted it, because I thought I could do it myself. I wanted to play the whole game.  After YEARS, 8, in fact, I realized I couldn’t do it anymore.  I had three options:  1.  Run away to a Greek Island.  2.  Finding a bridge to jump off of.  3.  Getting help.   Although the Greek Island idea sounded like the best option, I figured my kids wouldn’t appreciate it.  The bridge idea...might hurt...and still, my kids wouldn’t appreciate it.  So....looks like option three was the one I had to go with.

Since I was choosing option three, I had to figure out how to pay for it.  Heaven’s forbid that health insurance would help.  Oh no!  Grrr!  Giving up control of that, I figured I’d better paint!  I paint and have faith that someone will buy.  So far, like I said, “It’s mind boggling.”  Hey, I’ll paint for you.  $200 or $2000.  I’ll do it.  It’s a win win.  And a win for Jerry, too.

Comic Relief

Still laughing at this morning’s stumble. We were in the bedroom and I was helping Jerry get his jeans on.  Now, it’s fall, and I have fall allergies.  Due to my housekeeping neglect, our bedroom is the dustiest place in the house.  So, you see......Jerry was balancing on one leg, trying to step into his jeans.  I was trying to hold him up, when I got the attack of the sneezes. Bent  over, one leg, in and one leg out....we went down like a row of dominoes.  You’ve got to picture it!

Clear but Not Clear

Did I ever tell you guys that I’ve taken Jerry off of Namenda?  It seems that every time I tweak his medications he does a little better for a while.  Last Spring, I added Namenda to his daily regiment.  It helped for a couple of months.  But, as summer began to wind down, I felt he was really going down hill.  So, I decided to cut back on his medications, beginning with Namenda.  I think he’s more alert  now ...still confused....but a tad more clear. Does that make sense?  Guess not! Right now, I’m sitting with Jerry.  He’s eating a bagel, while I write.  I was thinking how I’ve got to get him to exercise and breath deep. He very rarely exerts himself.   So, I stopped my typing and said, “Let’s breath.  Let’s stretch”.  We rolled our shoulders ten times.  We reached to the ceiling and took a deep breathe.  Course I have to raise his arms up all the way, because he stops half way.  WE must do it together or it just won’t happen.  We look like a couple of OLD PEOPLE.  Hmmm.  That couldn’t be possible!

Since Jerry’s right arm isn’t exactly recognized by his brain, he usually keeps it in his pocket.  Yesterday, I noticed something.  When I place Jerry’s Aricept in his right hand, he forgets to put the pills in his mouth.  If I put them in his left hand, he remembers.  Here’s more.

On Sunday, he was anxious to get ready for church.  After getting out of the shower, he had his towel wrapped around his waist.  Then, he backed over to me.  I looked at him with “furrowed brow” and said, “What?  You want me to dry off your back?”  “Ok. (in piti talk...) you poor wittle thing.  I’ll dry off your back.”  He grinned with a sheepish grin (like he was getting away with something.)  We laughed. I dried.  Then, I turn around so he’d dry MY back.  He did the ole “pat the backside".  SUCH A MAN thing!  I don’t think this is what they mean by a “couples massage”.  Ha!  See,  I told you he was more clear.

Anyway,  he  went to the top shelf of his closet and pulled down his nice shoes and started to put them on.  Course, I reminded him that it might be helpful to put his clothes on first...starting with his underwear!  Then, he pointed to his nice yellow sports coat hanging in this closet.  We usually save that for special occasions.  Course, I suppose every day is a special occasion to him.  His attempts to dress were quite humorous that day.

It’s been a good day.  Sarah came.  I painted.  So, now it’s almost time to head up for bed.  Jerry  went up  hours ago.  Since “fall back” daylight savings time, he’s headed up earlier.  Far be it from me that I tell him it’s only 8:00.  The man needs his sleep ya know.

Dementia 101

Whenever I hear of a “newby” in this disease, I grieve for them.  I received a call last night from, yet another person, who’s been smacked down with this disease.  It wouldn’t necessarily have grieved me so much in the past because I had no idea of the impact.  Now, I do.   I’ve decided, along with a fellow painter friend of mine, that I’d rather faceplant into my paint pallet “when the time comes”, rather than die of this disease.  Since this has been such a long road for Jerry and I, and the decline has been so gradual, we’ve become accustomed to the lifestyle.  But, whenever, I hear of a “newby” it causes me to reflect back through the beginning years.  Such emotional devastation. Such “birthpains”. There are many “first” with this disease.  The first time you hear the diagnosis.  The first time you get your “house in order”; the wills, the funeral plans, the power of attorney. The first time you tell your children.  The first time you see him cry.   The first reduced paycheck.  The first time you retire all your debt and sell your home.  The first frantic search for a cure.  The first time he’s told he can’t drive.  The first time you sell his car.  The first time you explain to people.  The first time your friends move on without you.  The first time you order for him.  The first time you see him eat with a knife instead of a fork or watch him eat butter with a spoon.  The first time you cut his meat for him.   The first visit to an adult day care.  The first clinical trial.  The first time you throw care to the wind and travel without reservation.  The first time you lose him in a crowd.   The first time you shave him.  The first time you get a “sitter”.  The first time you tuck him in for a nap.  The first time you wipe his nose.  The first time you REintroduce him to his grandchildren.  The first time you go visit possible nursing homes.  The first time you  go to a party without him. .

First, there were the years of grief.  Then there were the years of my being invincible.  Then there were the years of submission.  Now the years are of acceptance.

Along with acceptance comes peace, a sigh of relief, and even humor.

Not all firsts are so gut wrenching.  There’s the first time of total dependence on God and realizing it is out of your control.  There’s  seeing the goodness and compassion of others;  the restoration of faith in mankind.  The first new friends and the blooming of where you are planted.  The first notice of God’s provision that came out of nowhere.  The realization that you’ve made it this far.  ..that you didn’t crumble...that you are stronger than you ever thought possible.  The first glimpse of brightness in the midst of such sadness.  The sun breaking through the darkness.  The new person you’ve become.  Yes, there are many, many firsts.  They ones that keep us thinking positive and moving forward.

Reunion

After two and a half days of continued emersion in painting, laughter, study, and wine, I’m back.  There were five of us girls and a delightful straggler who was asked to join us.  I had never done too much plein aire but was willing to give it a try.  The others were trained and serious.  Trust me, I did my best to unravel their training and they did their best to train me.  “The rules”....to follow or not to follow...THAT is the question.  The funniest part was when we all created magic birds out of old paint laid onto scrap mat board. Old birds and old wine..what a combination!   The home where we stayed was warm, historic, cozy and filled with art.  So were the girls.  (accept we’re not that historic!  Ha!)

On the ride back, I called Katie to see how she was doing and she told me that Jerry was having a bad morning.  This was the first time she actually had to dress him and undress him and get him into the shower.   It was the first time, she had to tell him to wash the stinky parts.  Her day before had been  great, she said, because he was so excited to see her.  They went to the aquarium and he was able to play with baby Charlie.  But this particular morning, while she was helping him dress, baby Charlie fell, busted his lip and broke his front tooth.  Poor Katie.   Not so easy handling her dad and an 16 month old at the same time.  Thank heavens Charlie’s dad is a pediatric dentist so he knew just what to do to save that tooth.  Also, thank heavens I had backup plans with Robert.

Robert was bringing Jerry to meet me in Wilmington.  He was gracious and accommodating, willing to wait on me to “have my day”.  We were to meet at the base of the Wilmington bridge in a Burger King parking lot.  He had gotten Jerry some ice cream while they waited.  I wasn’t driving because I’ve been a little scattered lately.   As Rose drove up into the parking lot, she pulled next to Robert’s tan truck.   Jerry’s face looked like a possum grinin’ the moment he saw me.  His soulful blue eyes sparkled with anticipation as  he slowly began to move forward in his seat and his expression thrilled me with warm fuzzies.

You know, this time away and the reunion, taught me a lot.  I reflected this morning as I watched Jerry sleeping.  I’m beginning to see what it takes to have enduring love.  It doesn’t come easy.  It develops over years of trials and the overcoming of those trials.  The fact that love is not all about the “la-la’s” in life. .. . more than the lusts and laughters.  It’ transcends those things and accepts to the core.

“if I have all knowledge; and if I have all faith, so as to remove mountains, but do not have love, I am nothing. And if I give all my possessions to feed the poor, and if I deliver my body to be burned, but do no have love, it profits me nothing.  Love is patient, love is kind, and is not jealous; love does not brag and is not arrogant, does not act unbecomingly; it does not seek its own, is not provoked, does not take into account a wrongs suffered,  does not rejoice in unrighteousness, but rejoices with the truth; bears all things, believes all things, hopes all things, endures all things.  Love never fails.”  I Corinthians 13

This continuing journey for us is a treasure of it’s own with rewards of unfathomable riches. I’m thankful to have been able to sustain it so far and pray that I will have the strength to continue to the end.

I’m Here - Southport!

Don’t know what happened last night, but after I pitched my fit, I got up to call the dog.  After that, I went into the kitchen to make some hot chocolate with marshmallows.  All of a sudden, standing at the sink, I realized I didn’t ache any more and I had no fever.  I was as cool as a cucumber and my snozzola was clear as a bell. Maybe God WAS listening!  Or was is the marshmallows?

Thank you. Thank you.  Thank you.  Thank you, God!  I’m here.  In Southport!  With my girls!  With canvas and paint!

Not Looking Good :(

Ok.  I’m sitting here on my chair, shifting from one side to another.  Hips ache.  Have slept most of the day.  My eyes are on fire.  This is not good. Poor Jerry.  Yesterday, we went and picked up take out.  Hate to admit it.....Fried Chicken!  Hadn’t had that in years.  Today, he’s having left over take out.  Here’s what’s on his plate.  Leftover spaghetti, leftover fish taco, and leftover pork and beans.  I figure I can get away with it if I give him a tall glass of milk to go with it.  He smiled and thought it looked pretty good.  That’s bad.

It’s not looking good for my girl trip.   NOW, I REALLY WANT TO CRY!  Watch out...I may have a pity party.  Ok...I’m having my pity party now.  Problem is...Jerry doesn’t understand.  I asked him to let the dog in...the door is right behind where we are sitting.  I just can’t get up.  He can’t find the door.

The problem with being a caregiver is that you CAN”T GET SICK.  Jerry keeps getting up and down and is walking around looking for the door.   I feel so bad .... I just yelled.  Poor Jerry.  It’s not his fault that I’m sick.  God!  Won’t you give me just ONE BREAK!  There’s the phone.  Jerry picked up the phone but doesn’t know how to answer it.  It’s my friend....she’s  the one I”m riding down with.  Now, she’s all bummed.  I mean... I’m not asking that Jerry get well....I’ve accepted that....I just want a break! I’m yelling again.  I would call this a temper tantrum.  Now my nose is so stuffed it feels like it’s a squishy red nerf ball in the middle of my face.  Montana is barking to go outside.  “Jerry.  Will you let Montana out”.  He’s frozen.  I’ve traumatized him.

Whah, whah, whah!  Hey, I am very, very human. I’m going to  eat some marshmallows.

13 hours to go.

Countdown

Zippity doo dah.  Zippity aye, my oh my what a wonderful day!   What’s come over me.  Only two more days to go before I fly the coup!!!   Three days of painting.  I can hardly stand it.  A little sinus thingie is trying to creap in..but oh no!  Not this time!  I haven’t told Jerry I’m leaving, yet.  He’d get all in a huff (what’s new).  So I figured I’d just wait until Monday morning.  In fact, I may not even tell him at all.  His buddy Bruce is picking him up early and our daughter Katie will be here when they get home.  I think I’ll play it by ear. Jerry and I are watching the Titanic.....for the umpteenth time.  Now those folks had a bit of back luck!  People say I’ve had some pretty bad luck...but I’d say not .  At least not like going down with the ship.  In fact, I think things are pretty good.  Uh Oh.....there’s “what’s her name", about to jump off the back of the ship.  Little did she know that the handsome Leonardo DiCaprio was about to swoon her off her feet.  If she had jumped....she wouldn’t have met that  hunky little guy.  One email buddy, said she would have stuck her head in an oven if she found out her house was falling into a “pristene lagoon.”  Well, no landslide is going to make me jump off a bridge or put my head in an oven.  I’VE GOT A LOT OF CANVASES to PAINT!!!!  Besides, who knows what great things are in store “tomorrow”.

Like I said, I’ve been fighting a little sinus infection.  Boo!  Now, I’m the type who never goes to the doctor and who doesn’t like to be coddled.  Jerry, on the other hand, will milk it to death....illness, that is.  So, when he sees me feeling “under” he tries to coddle.  I mean he’s been following me around and wanting to stroke and pat me.  GOD HELP ME!  (where’s that oven!)  I keep telling him that he can’t get near me...he must stay at least three feet away....even more would be better.    Once he got that figured out,  we did pretty well.  I kept reminding him to take the dog out..over and over and over again.  Once in a while they made it out the door.  You see, we live in an upside down beach house, where the living room is upstairs but the front door is down stairs.  Most of the time, Jerry can’t find the front door.  It’s really kind of funny how many times he turns around before he finds it.

Once he gets out of the house, he manages to walk a little way and Montana always brings him back ..all the way up to the living room.  Such a good dog.  Oh yeah, sometimes, Jerry comes in the house and shuts the door right in Montana’s face.  Then he comes up and waves his hands...as if...he can’t find her.  When we go back down, there she is...waiting at the door.  Cracks me up every time.

Rose and Jack are dancing an irish jig now down in steerage.  That’s what I’m going to be doing in LESS than two days.  34 hours, 23 minutes and counting.

One Down, 49 to Go!

Thank, GOD, I got another commission.  Only 49 to go! You know...it’s enough to make one go ballistic.  You pay for private health insurance...they don’t pay for in home respite care.  You pay for government medicare, they don’t pay for respite care.  You pay for private homeowners insurance, they don’t pay for failing retaining walls.  You look for government disaster relief due to hurricanes...they don’t pay for retaining walls.  It just confirms to me that you have to be self sufficient with no expectations from ANYONE...even when you’ve paid for it!  Where’s my island!

_____

I just remembered that the husband of a good friend, builds pools.  Pools require retaining walls.  Are you beginning to see the train of thought?  I told Joe what the engineer had said and the ballpark cost of the new wall.  Joe said, “My God, Sue.  You’re don’t need the Taj Mahal!  I’ll be out there to look in the morning.”  After Joe had been here for about an hour surveying the situation,  he put his arm around me and said, “Poor thing.”  JOE!  I DIDN”T NEED TO HEAR THAT!

Actually, he came up with some options that wouldn’t cost as much.  Jerry stood by and listened. ( Jerry thinks Joe hung the moon and always smiles when he’s around.)  It seems, since my property has government designated wetlands on it, it is going to take an act of congress to do any work.  Now, congress has always been known to act fast, right?  NOT!  Joe seems to know all the right people.  He knows the person who authorizes everything.   You know, we must protect that little varmint in that “pristine lagoon" of mine.  Let me tell you...I am the biggest lover of nature....but NOT WHEN MY HOUSE IS FALLING INTO IT!

Seriously, this is all going to work out.  In the grand scheme of things, it is NOT ETERNAL, and this is just another obstacle in life to hurdle over.  Besides, living in my car is looking better and better all the time.

In the meantime, keep sending in those painting requests.  My brush is anxious to paint for you.

By the way.  it needs to stop raining.

PS.  This is Bailey.  She’s a Christmas present for someone.

50 Paintings

Fifty paintings at $1000 each.  One painting per week.  Approximately one year……that's what it's going to take to pay for a new retaining wall!

Today, an engineer came out to the house.   I had a feeling this wasn't going to be good.  It wasn't.  The engineer  told me in no uncertain terms that if I didn't get my retaining wall rebuilt….soon…the next heavy rain might cause my entire foundation to cave right on into the wetlands.  Now, this is not your daughter's retaining wall….it's YO MOMMA'S.  We're taking MAJOR PROBLEMS!

A couple of months ago, we had a category 4 hurricane heading straight for our coastline.  We were under mandatory evacuation.  Then, that little bugger storm turned and went straight north.  Whew!  About a week or two later, however, a teeny weeny little tropical storm dumped around 22 inches of rain on us in about 24 hours.

Back to the engineer.  The teeny weeny little storm had shoved water right into ceilings in three rooms, but I decided not to panic. Don't sweat the small stuff, right? After all, it's not eternal.  Well,  after talking to the contractor about the ceiling repairs, I noticed that my flower bed was missing.  You heard it….my flower bed was missing.  I walked over to the edge of my yard and found that the water from that storm had forced the retaining wall to begin to cave in and plates of shifting sand are falling away. Guestimation costs….$40-$50,000!  DID YOU HEAR THAT!

So far, I'm still not sweating.  I"M IN SHOCK!  I mean, what am I going to do?   If I don't get it repaired and the foundation shifts, the decks will begin to pull away from the house, and pilings could give way as the foundation is compromised.  I have no choice but to get it fixed.  Here...just let me pull out my checkbook!   Remember, I'm the  one that sells paintings to pay for respite care.

"Hey, GOD, are you listening? I know you are and there has been absolutely no trial when you haven’t been there right beside me.  The pilings are broken, with two more on the way.  Here, God, let me make sure you see those.  There they are.  See those splits in the pilings?  And here...my yard is caving in.  THE YARD THAT HOLDS MY HOUSE UP!  Course, you know that, don't you, God?   You know all about foundations, huh.  ..."

"I know, I know.  You say you will never leave me or forsake me.  I know that.  And you are much, much bigger than this stupid retaining wall.  You created the universe!"

I’m just leavin’ it all..up to you-u-u.....(isn’t that song?)

Now, 50 paintings, $1000 each, 50 clients. 25 paintings, $2000 each, 25 clients.  100 paintings $500 each, 100 clients.   1000 paintings, $50 each, clients……..

Random Thoughts

Just opened one of those little Dove chocolate candies.  I didn’t know they had a saying on the inside of the wrapper.  To my surprise, it said, “Sometimes breaking the rules is more fun.”  WELL, DUH!! I never have been a strict rule follower.  I never was a rebel either.  I guess I was just one of those “march to my own drummer” types.  (I, I, I....it’s all about ME, ya know.) My drummer never led me into dark places or wild places and  I thank God for that.  Social rules never meant much to me, either.  Couldn’t stand fraternities or sororieties or any organization that says “you’re not good enough to be with us”.   “Come one, come all" is more my motto.  (as long as your nice.) Wearing white after Labor Day seemed fine to me; and what’s wrong with sweats and flip flops at the grocery store?  Who are the social police anyway? And if I want to use my sterling silver every day, along side of my pottery, I do.  Why should I keep it locked up in a box?  Never could figure that out.

Don’t know why I’m talking about these things.  I suppose it’s because Alzheimer World has no social norms.  I had to get over Jerry eating with his fingers.  What’s wrong with fingers anyway.  The cavemen did it.  Course, maybe that’s why they created the fork...it got a little messy.  Course, sometimes I have a problem with his eating with a knife.  That’s obvious.  Funny how Jerry cannot fix himself a sandwich, pour himself anything to drink, put tooth paste on his toothbrush, shave, button his shirt, put on his underwear....but MAN...all I have to say is "ICE CREAM" and he pops up out of his chair, gets a spoon and starts scooping.  Frankly, I think it’s all an act.  He’s really perfectly fine and just wants me to wait on him hand and foot.  MMMMM...not quite.

I think I’ve reached a new stage of acceptance.  NO EXPECTATIONS.  Up until a couple of months ago, I think was still engaging Jerry like he was still my partner, companion, best friend, and so on.  Therefore, I was still emotionally attached and disappointed and depressed.  I couldn’t get a response from him. During the last few months, however, I think I’ve gone through some kind of labor pains of grief.  "Stop!  I can’t handle it!  When will it end?"  Now, I think I’ve reached a new phase in the grief.  While I still adore Jerry and consider him my buddy, forever,  I think I am able to separate my emotions and consider him like a patient.  My patient.  My special patient.  My adorable and beloved patient.  It’s a good thing.  Progress.  I’m in a better place which makes Jerry in a better place.

Now...I think I’m going to get another Dove chocolate and read another wrapper.

Perfection - Who Cares. It’s the Lemonade that Counts

There was a time when I hated football.  I was a football widow from the get go.  As a sweet young thing I just didn’t understand why I wasn’t the love of Jerry’s life.  His first love was always the Crimson Tide!  But, time passes and now, I LIVE FOR FOOTBALL!  I live for the days that Jerry is content with his first love...a bunch of huge men chasing a small leather ball down a 100 yard field.   Today, Saturday, was game day and  I was going to get to play  “house”.   Why?  I don’t know.  Playing “house” is like trying a new lipstick or buying a new pair of earrings.  It just feels good. Ring.  A dear friend, named “Z” called and said she wanted to give me a day to help...whatever I wanted to do.  Sitting at the kitchen table, watching Jerry finish his breakfast,  I began whining about the cable being out and Jerry not being able to watch Alabama play.  Then, I moved to the dog hair and the dust.  “Why in the world would you expect me to care if your house is clean or not?” she said.   From that, I said “you know what I really want to do?  I want to sand my floors.   I want them to look worn so I won’t have to worry about what they look like.”  She said, “Let’s do it!”

By the time Z came over, Jerry and I had all the furniture moved out onto the deck.  I was pumped! This wasn’t going to be a new lipstick...it was going to be a makeover!   Poor Jerry didn’t understand at all but we knew if we could get him some football he’d be fine.  So we set Jerry up with a radio so he could listen to a game the old fashioned way.

As  Z stood over me watching me sand, she commented, “Oh my.  I just didn’t know how big this floor was!”  What did she think....I was going to sand a 2x2 square or something?”  Here we had this huge floor to do and my sander was the size of a CD.  You know, one of those hand held things. We laughed so hard.   After about 30 minutes of getting nowhere on this floor, our little sanding project slowly began to diminish.  And every time Jerry would come down the stairs, we’d have to stop and give him a hug and remind him of the game he was missing.   Whatever!  I really didn’t care about the floors.  We figured that since the furniture was out on the deck, we’d just go ahead and  clean those floors.  She vacuumed.  I mopped.

Z helped me get all the furniture back inside, helped me throw away my old magazine, rearrange a lamp and nicknack or two.      She put her “creative touch” in the room, then we retired to the deck to put our feet up and talk. Who cares about perfection of my floors?  Who cares about whether a house is perfect or not.  The most important thing is that it’s filled with love and living.   My favorite part was just Z and me...talking and praying about what was on our minds.

After Z left, I went back up to my kitchen where I saw a message waiting on my cell phone.   It was from a  gallery saying “Americana” had left the building.  Yippi!  A painting had sold.  What a way to end a perfect day.

What Day Is This?

I’ve been toying with the idea of making some sort of weekly calendar for years.  Jerry hasn’t known what day it was since.....I can’t remember.  Ha!  However, he always seems to know when Sunday is.  Hmmm.  Anyway, over the years we’ve tried pocket calendars, wall calendars, desk top calendars....I’ve picked up magnetic boards, white out boards, both large and small...toyed with the idea of laminated pictures for my fridge...you name it.  Nothing really seems to work.  So I gave up on the idea.  I figured if I could keep him happy every day..that’s really all that mattered. Well, today is a “new day”.  Ha, again!  I’ve thrown all my old ideas out the window (literally), and I’m trying again.  Not wanting my living room and kitchen to look like a preschool, I’ve decided to make up some sort of small calendar that shows only one day...TODAY.  I can flip over the day each night when we go to bed.  Jerry cannot process when tomorrow or the next day is, so today is really all that matters.  On this day board, which will not be big, I’ll place a laminated picture of who is coming to see him. (Robert, Bruce, Sarah or John).  Everyday when Jerry gets up he knows someone is coming.  Just not who and if I tell him their name...he still has no clue.  (Hey.  That rhymes.)  If I call Sarah, "the woman"...he knows.  Robert is called “big guy”, Bruce “best friend”, John is “guy who loves Montana”.

So.  Where do I put this little treasure?  There really is no wall in my kitchen or living room.  Seriously, I don’t want to hang it over my fireplace.  Putting it on my fridge might be a little cumbersome every time I open the fridge door (which is quite often.  grrr!)  So, hmmmm.  Where are we every day when we get up and every night when we go to bed?  THE BATHROOM.  (sometimes longer that I want to be.)  After all, we brush our teeth every morning.  We shave every morning.  Why not hang it on the wall by his sink in the bathroom?  It’ll be like his friends are saying good morning and good night every day.

Let’s see if this helps.  Let’s see if this makes any difference in Jerry’s world.  Let’s see if he remembers by the time he comes down the stairs.  Probably not.  But hey.  I’ll keep you posted.

We Were Young Once

This morning I was reading the paper to Jerry over coffee.  It's something we've always done…since the beginning of our marriage.  That's going on 39 years now.  I had stopped the paper about a year ago because we were always going out of town and the delivery man couldn't keep up with our schedule.  So, I figured Jerry couldn't read anyway, so I'd just read to him off the internet. This week, I ran out of coffee, so I rode down to our local wine shoppe/gas station where I could buy some already brewed, steaming hot,  coffee heavily laden with cream.  Today, when I got back, Jerry was awake, so I put the sports section and coffee on the table for him.  He read "Heels".  I nearly dropped to the floor!  Did he read that?  Oh my!  A few minutes later I began reading an in-depth article to him about the Carolina Tarheel football team playing Miami tonight.  The article was talking about the Fountainebleau Hotel in Miami where the Tarheels were staying.  “Hey, Jerry.  We’ve been there.  You took me there when you were a hot young salesman.”  As I reminisced with Jerry, he began to remember.

What a trip down memory lane!  In our early years, when Jerry was a go getter.  We were living in New Orleans.   Many times, BC (before children),  I traveled with him.  This trip was to Miami where we stayed at this ritzy Fountainebleau glamour spot, where there were commercials being filmed and celebrities walking all around. That weekend, we got all dressed up in our "night on the town" duds and hopped into a cab, that took us to Joe's Stone Crab, a legendary restaurant known for it's stone crab.  I was all of 22 years old and LIFE WAS GOOD!  While we were there, in walked Mitsy Gaynor.  Now for many of us dinosaurs…Mitsy Gaynor was one of those classic movie stars from way back.  It was my first movie star sighting!  I even remember what I had for dessert…..KEY LIME PIE!  That was my first, too.

We introduced each other to so many things.  We were so young and had a whole huge life ahead of us.   He was four years older and we began dating when I was 17 years old.  He was a college boy.  We married when I was 19 and he was 24.  Once I graduated from college, he was already on his way make his first million by the age of 25.  Ahhhhhhh, such dreams.

THEN, we are dropped on the sidewalk of real life!  But, we won't go there today.  This place is too good to leave right now.  Time to pour another cup of coffee.

New Nanny

Folks have been asking me how the nanny search was going.  Well, today was Sarah’s first day.  We’ll be starting slowly with one day a week.  I received a referral a couple of weeks ago and we did a short interview last week with Jerry present.  A friend happened to stop by while she was here, so I was fortunate to get her input also.  At our interview, I observed Sarah’s manor with Jerry and his with her.  She was not reluctant at all to talk directly to him.  I liked that.  Even though he was unable to verbalize much, his eyes lit up when she bonded with Montana. Today, the time flew by.  We began by going over my expectations, then we discussed a daily schedule.  We decided she would write a daily log, so we could track what works and what doesn’t.  We went over a few of his habits...like, when I bring his plate to him, if he gets something on his fingers, he looks at me   as if “go get me a napkin, Sue.”  Then Sarah  said, “Sounds like a man!”   She was quite familiar with Alzheimers.  She suggested they begin with a dog walk, then come home and spend some time doing a puzzle, or loading a dishwasher (some sort of occupational therapy) in the morning while he was fairly alert.   I stayed down in my studio and could hear their “conversation.”  Her voice was very upbeat but soothing and I could hear her encouraging him.  When he wasn’t able to do the task, she still was very positive and respectful.  Sarah has a little laugh that keeps things light.

They went to a local hamburger joint for lunch.  She handled it like a charm  when he didn’t know what to order or when his sandwich fell apart.  (It takes two hands to hold a hamburger.  Jerry only uses one hand.)  She wasn’t embarassed, wiped his mouth discretely, so as not to make him feel self conscious.  She said she was already becoming attached and that Jerry reminded her of her father.  That’s good. Once they came back, I could tell Jerry was worn out and just wanted to watch TV.  So Sarah turned on the military channel and he eventually went to sleep.

Interesting, in the short time they were together, Sarah managed to get him to respond to Alabama football and the military. Even in those short moments, she managed to glean that he was in a traumatic accident when his men were killed in a training exercise in the 70’s.  That accident still is fresh in Jerry’s mind even though it happened 40 years ago.

So, I’d say it was a good day.  Six paintings were started.  The website revamped AGAIN.  Jerry was happy.  Sarah was happy and  Sue was happy.

Pied Piper

Walked for a while on this gorgeous fall morning.  We got in last night from delivering baby Mac.  Reminiscing over the weekend, I envisioned how baby Mac and Jerry would follow me around the house.  I was down in my daughter’s basement where she had set up a playroom.  Jerry and Mac were down there.  I told said to them both, “Wait right here.  I’ve got to go get something upstairs.  I’ll be right back.”  I got up and bounded up the stairs hoping to be up and back before they managed to follow me.  But, half way up the stairs, I looked back and there they stood, looking up at me with their big eyes, eagerly following in my tracks.  At first, I started to say, “No, hold on" ....but they looked so cute I couldn’t stand it.  So, I said, “Come on.” Then that song came into my head...”Come on, babe. Can’t you see, I’m the Pied Piper. Follow me, I’m the pied piper......”  Remember that song from seventies?

It’s really takes so little to enjoy the simple pleasures in life.

Today, I’m trying to finish the website and finish the paintings for the pediatric dental office.  I’m about done with the penguins who are singing in the rain.  They were fun to do.  Must admit...the arctic characters playing leapfrog were a bit of a challenge and they can just stay in antarctica as far as I’m concerned.  I’m definitely ready to move on.

I’m so excited to be going on a girls trip in a couple of weeks.  We are all painters and we’ll be painting plein eire for three days.   Three days!  Girls with a paint brush in one hand and a glass of wine in the other.  "Let the good times roll! " (I stole that line.)   I’m already packing my art supplies (in my head).  It will the first time I’ve left Jerry overnight since this journey began.  Well, no....I went to a painting workshop for 2 days about 3 years ago.  My daughter, Katie is coming to stay for the three days.  I’ll keep the “visitors” coming so she won’t have a breakdown.  I’m so grateful and can feel the stress beginning to roll down off my shoulders.

I’m Mac and I’m Two

Ok.  I really must have sounded depressed on the last post.  I guess it was just “one of those days.”  It’s to be expected and I would be delusional to think “those days” aren’t going to happen from time to time.  Anyone who says they don’t  have them, is LYING!  This too shall pass and tomorrow’s mercies will come again.  Thanks for all your sweet and encouraging comments.

In fact, Monday, we drove up to Raleigh to pick up our baby McCauley.   He’s the youngest son of my oldest daughter.  “I’m Mac and I’m two.  You’re five.” he says to me.  How could I not laugh at that!  He’s just like a big soft pillow with an easy personality and we absolutely must snuggle when we  watch Toy Story. It couldn’t get any better than that.  Jerry’s done pretty well with Mac.  In spite of his “awe, come one.”  In fact, I caught the two of them wrestling together.  Well, sort of.  Actually, Jerry was sitting in his chair and McCauley was crawling over his back.  I guess you could call that wrestling.  Besides, they sat beside each other on the bar stools and sipped their spaghetti noodles together.  Good deal.

Monday, before we left, I interviewed a little gal for a nanny position.  She did pretty well with Jerry...why I think he even broke out in a smile....(almost).  Since she’s a dog lover, she had a brilliant idea of training the dog to help Jerry.  Of course, that’s what made him smile...anyone who loves his doggie must be a great person!  It’s ME, who doesn’t pass the test on that one.  Actually, I totally love Montana....I just don’t love her fur so I make her stay outside most of the time.  That makes me the “bad girl”.  Never mind that I’m the one who feeds her, plays with her, and picks up her poop. Anyway, Jerry should like his new friend.  She certainly seems flexible and very comfortable with him and I don’t think he’ll be a grump-a-lump with her. She’s too sweet.

It’s 1:30am.  I’m watching those miners being brought up the surface.  What a miracle!  MIRACLES REALLY DO HAPPEN!  While waiting for the first miner, I spent time redoing my website.  I looks totally different.  Please take a look.  www.suescoggins.com.  I think I like it....’cept I can’t figure out how to get my name on the home page.  (minor detail)  Oh well...tomorrow’s another day.

Just wanted to let you know that I’m still living.  Course, if I don’t get to bed, I won’t be living for long.  Baby Mac will be up early and he’ll be ready to go find the deer.  It our tradition.  Can’t let anything get in the way of that.  Thanks again for your sweet words.  Nighty nighty.

Where Oh Where Has Jerry Gone...Long Time Passing

This morning was a hard one.  We actually slept until 10:30.  ME!  10:30! When I sprung out of bed, I saw the clock, and laughed....It’s 10:30!  Can you believe that, Jerry?  We slept ’til 10:30!  I mean, I was refreshed and feeling so good.  Jerry responded with a groan.  I don’t do groans well, but I ignored it and said, “Let’s drive to Raleigh and pick up McCauley.  “Awe.  Come on.” he said.  Now, “Awe. Come on.” doesn’t mean...Yippi....it means, "groan...I don’t want to....why do I have to do this?”   Immediately, my happy bubble was being burst.  The joy was being robbed.

I don’t know if Jerry is an unusual case, but several people in the last few months have commented on how hard this must be.  “I don’t know how you do it.” they say.  Well, I don’t know how I do it either.  It’s really the biggest challenge I’ve ever faced in my life.  I think the hardest thing, is not to lose Jerry to this world.  I know we are all going to suffer at times, and we are all going to die.  I am secure in mine and Jerry’s eternal hope.  The hard part is living HERE.  The hardest part is staying positive when surrounded by all this negativity.  I mean, why does a person want to live, when they see things so miserably?

It occurred to me that I don’t have any videos of Jerry when he was well. Gone are the old tapes of when he was a young father.  Gone are his soccer coaching years and his cheering for his kids. Gone are the movies of his being on top of his game.  This 12 years has been cemented in my memory.  Jerry wasn’t always a miserable person.  He was the friendliest person, I think, I’ve ever known, and never met a stranger.  He would go out of his way to be kind to someone and would have loved playing with his grandchildren.  (I think.)  That Jerry is gone now.  I don’t think he realizes how negative he is.  I don’t think he knows what a killjoy he is.  I don’t think he’d like it if he knew.

Nonetheless, I don’t know how to handle it.  My friend came over this morning.  She had a feeling we were in crisis.  We were.  She saw Jerry outside with the dog and he told her he needed help and that things were bad.  They were.  They were really bad, because I reached my breaking point.  I bubble had been burst and no matter how hard I tried to stop the leak and blow it back up, it was a lost cause.  My friend, empathized and tried to help me find a solution.  She acknowledged that Jerry was declining and was becoming unable to reach.  There still are no day cares around and facilities may not be an option, yet.  However, she said, “If I don’t do something, I’m going to lose myself.”  “There will be nothing left of me.”

I find myself grasping at straws.  Putting in my last ditch effort..over and over and over.  The ship is sinking, no matter how hard or how fast I bail out the water.  She wished she could give me some answers, but couldn’t.  I responded, “In time, the answers will come.”  In the meantime, I’m going to keep on keeping on.  Her respite of 30 minutes of conversation, was the respite I needed for the day.  Thank God, she answered His call.

Trudging Along-No More!

Today, I went to exercise class. It’s been so long since I’ve been and I was not happy with myself.  About a year ago, I was addicted to exercise. Especially, Zumba.   I have never really been an exercise freak, but I was really getting into it and feeling good.  THEN, IT HAPPENED.  I reinflamed my old neck injury, laid off for a while, then Jerry declined and it wasn’t convenient anymore for me to get to the gym.  All that to say......I’m a fat, weakling now! So, today, in a SILVER SNEAKERS class, I had a “come to Jesus” meeting with myself.  Don’t know if you know how we caregivers work, but we must keeping going...even if we neglect ourselves.   We (I) don’t wallow in self pity for too long, nor do we (I) confront our emotions for very long.  I have to keep pushing myself everyday to keep a positive attitude and be strong.  All to the tune of NOT being realistic.  All to the tune of NOT making time for staying in shape or taking care of myself.

So, when I got to exercise class and was lifting pitifully light weights instead of jogging around the parking lot...I was getting all mad and sad at myself for letting myself get into this situation.  Grrrrr!  It’s not going to be easy to get back into the routine...but I’ve GOT to do it.  I have to.  Without realizing it, I see that all my movements have become as slow as Jerry’s.  In fact, he’s gotten to where if I get him to stretch, he’ll fall over.  I can’t let myself get to that point, too.

That’s also brings another challenge.  If I am all energetic and get all enthused about things, then I come home to Jerry who’s NOT....whoa!  That brings a whole new dynamic into the ring.  It’s much easier if we are BOTH lethargic.  It’s not easy to be all excited to do something, when the other person won’t (can’t) get up and out.  How frustrating is that!  Oh brother!

I really do think I need  a shrink!