Sunday, February 28, 2016

"Gary, Get your Hands Out of your Pants!"

I'm nearing the decision to not take Gary to the store with me anymore.  It is too stressful.  It is my problem, not his but I just hate it.  My spontaneous nature hates the idea of having to plan ahead for every little thing. 

I only needed milk and some vegetable to make spaghetti sauce.  My thoughts centered around the fact that all we had to do was run in the store.....right.

Here is a breakdown of the events once entering the store parking lot.  "Honey, what are we buying?'' I told him.  It took me walking around to the passenger side, taking his arm, coaching him to put out both feet and put them on the ground and tugging hard to get him out of the car.  At a snails pace, we stopped to get a shopping cart as I thought if he drove and I walked beside him I could go faster.  Why do faster, Ada?  Well, I don't want to spend the WHOLE day in the store, that's why.

The walking-beside-me idea did not work as we approached the dreaded Girl Scout Cookie exhibit.  Of course, he had to stop and inquire.  The sweet little girls do not understand when the mean old lady (me) would not let the nice old man buy cookies.

We went into the store and I strategically planned our route to get to the milk the fastest.  Gary's shirt was untucked from his sweatpants.  Oh No!  I knew he would soon discover this and start tucking his shirt in his pants.  Imagine the old man walking through the store with both hands down his pants moving them rapidly to tuck in his shirt.  It looks like other things to the untrained eye.  I knew it was coming.

"Gary, hold on to the buggy while we go through the store.  Gary, stay with me.  Gary follow me.  Gary hold on to my belt loop.  Gary, don't pull down my jeans.  Honey, take your hands out of your pants, your shirt-tail is tucked in fine.  Gary, stop tying and untying your pants!  Gary. take your hands out of your pants, Gary. Gary."  I noticed a man standing nearby staring at us.  He had overheard this bantering and Gary's response to each.  He scowled at me.  HE SCOWLED AT ME!

I wanted to scream at Him, "if you can do better, come over here and train me! Have you ever done this?  "  A nasty name came to mind but I zipped my mouth and only thought of him as an anal orifice.

Nearing the check out counter, I noticed the cashier is one who has helped us before and smiled quietly as Gary read all the names of the candy bars, signs and specials.  Today was no different.  The cashier asked, "How are we today?"  My guttural response was, "I am stressed, thank you."  He glanced at Gary as if to say, "no wonder." 

We finished the transaction and started our way back to the car.  "Gary, walk beside me and help guide the cart."  He did, but pulled so strongly that the cart started to make a circle into the lady walking next to us.  I corrected the turn with one hand and it hurt.  (Old injury from sailing).

We made it to the car after nearly dragging Gary across the parking lot.  I put him in the passenger side and closed to door.  Suddenly, I remembered the events at the airport over Christmas when he locked me out of the car.  I grabbed my keys and loaded the groceries.  Just leaving him long enough to walk the cart to the drop off area is stressful. 

Once back in the car, he asked if we were going into the store now.  The ride home was quiet and he is now sleeping in the massage chair.  Whew!

One more freedom that has to be compartmentalized into a schedule. 

Saturday, February 27, 2016

Gary's mid afternoon shower

Gary has now had an MRI and an EEG and we are just waiting on the results.  I can guess that the new neurologist will determine that he has dementia.  Duh...

In preparation for the procedures, we took Gary off all the nutritional supplements that I was giving him to keep him calm and increase brain functionality.  I would have guessed that he would have been a nervous wreck but instead he was lethargic and lost a lot of energy. 

Now that he is back on them, he appears to have improved some however, that will never mean normal.

Today, I took him on a quick trip to the bank, UPS store and grocery.  When I took him into the garage to get in the car (with the garage door open), he headed straight for Heather's car rather than mine that was next to him.  He tried to get in her driver's side all while I am yelling at him to come back and he was at the wrong car.  I put down all I was carrying and went to him.  I could not get him to look away from the door handle on this wrong car.  Finally, I pulled very hard on his arm and fought me and moved to her back door.  I took me three more tries which included putting my face directly into his to get his attention.

After getting into the correct vehicle he settled.  He stayed beside me at the store and behaved for the most part.  We came home and took a nap.  I always sleep a shorter time so I got up and went downstairs to catch up on email.  The bedroom door was open and I heard nothing.  Diva asked to go out and then as I walked to the other room, Heather said, "what is that noise."  "Dang it, Diva go find Dad!  What is he doing now?

Upon entering the master bath, I found him in the shower and lathering his hair.  Fully clothed in jeans, t-shirt and MY fleece bedroom slippers, he had decided that he needed a shower.  I stripped him down and found he had soiled his diaper with pee and must have felt that was bad.  I let him finish his shower and moved him down to the massage chair.

Every day is a new adventure with this disease.  An old friend is coming to visit on Tuesday.  We had not heard from her since around 2006.  I gave her this link and tried to prepare her that he is not the Gary we once knew.  It will be fascinating to watch. 

Sunday, February 21, 2016

The Split Personality Required to Be an Executive AND a Caregiver

Ever since I met Gary in 1985, I have been focused on my career. We started together selling campground memberships/timeshare and later, oil wells. We were incredibly successful with Network Marketing.  I worked as an Admissions Advisor, Director of Admissions, Corporate Director of Admissions, Associate Director, Campus President, Provost and now Executive Director.  I like to think that all were promotions or a better place.

Until about seven years ago, Gary was my husband, mentor and teacher.  He taught me about sales, reinforced integrity, and taught me how to think critically in every situation.  I am a free spirit by nature so learning the skill of using my left brain was often tough. He hung in there and eventually, I became an Executive.  While he was proud of me, he also hated that in the latter years I had surpassed his success.

When it comes to Gary, I am not sure what came first, his failure or his Dementia. He started projects that were never finished.  Was it boredom or was he hiding a weakness in his thinking? 

I remember vividly coming home from my former College one day when I was facing a particularly difficult day of downsizing.  We were so close as a work family that it was devastating to know that I had to ask someone to leave.  I asked for advice from Gary.  He looked me squarely in the eye and said, "Honey, I don't know what to tell you.  I have nothing left to teach learned all I have to teach and you are better than me." 

On one hand I was thrilled and at the same time crushed.  While I watched him pour himself a triple whiskey and coke, I made a decision. He often begged me to quit my job and stay home to work with him.  I decided that no matter what, I had to continue with my success because someday I may need to be the strong one.  In retrospect, my wisdom then surpassed my situation. I had no concept then of what I would be facing with his dementia that was to come.

If you have never had to decide between work and family, I hope you never do.  I was challenged with learning to balance the 50+ hour job  and taking care of things at home.  Even when Gary was still working, I spent weekends managing the books, troubleshooting the computers, marketing the current product or designing a campaign of some sort.  We worked hard and we played hard. 

I remember many nights coming home from work after a long day and spending 5-6 more hours in the office.  We made a lot of money.  We lost just as much as Gary started failing and took over the business as I focused on my job.

Before we moved from Elk Grove, there were times when I would have a crisis at work and would call him to say I would be late.  The situation was always the same.  I would ask if he could feed Diva (our beagle) and start dinner until I got home.  Many times he did and many times I would find him at the computer having not eaten nor started anything.

When our accountant told us to short sale our house due to the price being nearly $300k under what we owed, I really started seeing his problems.  He could not make decisions without significant input.  He had hired a team to raise enough money to build a Dementia Care facility.  He would drive around Elk Grove to find an appropriate tract and call the same broker he had called three times before never remembering that he had.

All the while, I was running a college and doing the best I could.  Is that an excuse?  Maybe, maybe not.

Now, seven years later, Gary is never to be alone for fear of him falling, burning the house with the stove or walking out to never return.  He goes to day care five days per week and must have a caregiver at all times until I come home. 

Due to my years of compartmentalizing home and work, I can focus on work while at work.  In fact, having to escape thinking of him has made me a stronger Director.  I immerse myself in Profit and Loss Statements, team building and  providing a quality education to the near 1600+ students who are working on their B .S. degrees. 

While at home, I must focus on him.  I must start to plan for the future.  How will I afford the long term care that he is going to need?  I need to remember to tell the agency what days I will need someone late because I have a ceremony or dinner, etc.  I cannot afford to miss a beat in either role.

Sometimes it is like having a split personality.  I don't have that affliction but could function well if I needed to do so.

Getting an MRI with Valium

I get so frustrated with Gary sometimes that I want to scream....and I do. However, yesterday, I made it through without yelling, screaming or going nuts.

He was scheduled for an MRI at 1:30.  The doctor gave us a valium to give him prior to the procedure.  Part of the procedure is that one lies on a plank, head in a container and stillness is critical.  I knew that would be a problem due to his constant talking, wiggling, patting, drumming and whatever else strikes him at the time.

I gave him the Valium before we left home and as we drove to the office, I watched him starting to slide down the seat.  We arrived at the office and I managed to get him out of the car....painfully slow and always at risk of him falling asleep.  After checking in, the nurse told us we needed to get back in the car and drive through the parking lot to the mobile trailer.  Really? 

I got him back in the car after quite a struggle.  We drove to the mobile trailer, parked and then started the struggle of getting him out of the car and up the steps (about 8) and into the trailer.  It was like assisting a drunk person trying to walk.  All his weight was on me.  As we got to the top step, the technician came out and said that he did not have a waiting room and that we needed to wait outside.  He helped me get Gary safely back down the steps and I tried to walk him around the parking lot.  He walked like Tim Conway when he played the old man on the Carol Burnett Show.  The only difference was the reality of the moment.

I put him back in the car and waited.  He was groggy. After 20 minutes, the technician came out and helped get him to the lift on the side of the trailer.  He was quite helpful.

The near hour long procedure was performed with Gary taped to the board.  I was allowed to touch his legs and arms as necessary.  He fell asleep and started snoring so of course,  that was forbidden movement.  He got cold at one point and crossed his arms.  He crossed his legs.  He has a horrible cough and moved a tremendous amount. 

When done, the technician said that he thought the tests were okay but borderline due to the movement.  He assisted in getting Gary back in the car and he slept most of the way home.

Upon returning home, he slept most of the afternoon.  I had some quiet hours.  It was precious.

There are many feelings associated with losing a loved one to dementia.  He is still here physically and mentally, there is a  person there, but not necessarily my Gary.  It is some other form of a man. He doesn't think like him, nor act like him but he still knows my touch and tells me he loves me.

I feel anger.  Remorse.  Anger.  Pain. Grief.  Anxiety. Frustration.  Love. Did I mention Anger? Questioning.  Rage. 

I had my own frustrations this week.  I ended up skipping a Nursing Pinning Ceremony and went to Urgent Care with a piercing pain in my side.  They referred me to the ER for a CT scan.  Diverticulitis was the diagnosis.  I managed to get the prescriptions filled and am on heavy doses of antibiotics and am not needing the pain pills. 

This too will pass and life will go on.  While sitting hooked to an IV in the ER, it would have been nice to have my husband beside me or at least available by phone.  There was no point in even trying as he is just clueless to the emotion of others.  He still laughs and gets frustrated...the only way I can describe him is disconnected and distant.

What is next?  Only God knows.

Saturday, February 13, 2016

Continued decline and the Circle of Life

On Friday, I took Gary to the new Neurologist.  We are about to undergo an MRI and an EEG.  His decline has been rapid and the doctor wants to check out all the possibilities.

During that meeting, he recommended that I talk to our Primary Care Physician about Medicare and Financial Assistance that might be available to me as a caregiver. I had my own appointment later in the day with the PCP so I knew that I would ask him.

Unbelievably, when I got there, the doctor asked me about Medicare and whether or not I had registered Gary.  The neurologist had sent him a message during the day to give him a heads up.  At least some people still care and communicate.

During my visit, the doctor asked about Gary and we discussed decline, incontinence, vitamins and the circle of life.  He stood and drew an imaginary circle in the air and talked about the infant, child and the elder as it relates to behavior and body functions.  So true.

I was diagnosed with asthma related to allergies and was given medication.  Its hard to do all that I do when I am hacking up a lung and having difficulty breathing.  I hope it helps. 

Meanwhile, back at the Gerard ranch....Heather and Xander are gone for the weekend so I'm on my own.  Gary and I went to bed early and I followed the normal ritual.

"Gary, please go to the toilet and pee." It is important to point out the part about the toilet as he often whips out his penis to pee wherever he stands. 

He did go to the bathroom and we went to bed.  I was fast asleep at 3:15 when he awakened me and asked me to untie his pajama pants that he was holding in his hand while sti

Saturday, February 6, 2016

Urine Chronicles: Loss of two pair of Dress shoes

Life sure has its changes. 

Gary and I have been married 30+ years.  We have traveled to many countries, lived in waaay too many places and shared incredible adventures.  I am thankful that during those years we did not stay home and wait on retirement.  We would never have had those adventures.

In 2016, it is difficult just taking him to do errands.  I cannot imagine ever vacationing with him again.  That makes me incredibly sad, as we so loved traveling and playing in exotic, fun places.

I day dream of going to Cuba and seeing the for-so-long-forbidden-to-America land and meeting the people.  I long to go back to Panama where we were to retire and play golf and hike.

Now, just to go meet friends for dinner, I have to arrange for a caregiver....and then worry the whole time.  It is not right nor fair.  But it is what it is.

This was an incredibly tough week.  I am sick with a bad cough and no energy.  Our new caregiver is working out well and Gary seems to listen to her.  He was kicked off the transportation bus due to constantly unbuckling his seat belt, taking off his shoes and at least twice, threw his shoes at the driver.  (I have a hard time believing that one but he must have been terribly frustrated by something). So, now his caregiver, Jessica, goes to his day care and picks him up.  So far her biggest issue is that he likes to click the window button....constantly. 

On Friday, I came home to find Gary and Jessica sitting at our dining table together and he was coloring a picture.  He sat quietly and without comment as she explained the events of the afternoon.

Normally, while he takes a nap, she sits downstairs or works on assignments while he sleeps.  She can hear him get out of bed and checks on him to prepare him for a walk.  This day, she did not hear him get out of bed, but rather heard something a few minutes later.  She entered the bedroom to find it empty and walked in to the master suite where he was standing fully clothed, in the shower, peeing.  She let him finished and then noticed that he had a pair of jeans in his hand.  Since they were "damp", she looked around and followed a trail into my master closet.  Sure enough, I had not put away two of my best pairs of shoes and had those same jeans on the floor ready to put on upon arrival from work.  He had urinated in my best pair of shoes and soaked the suede pair of pumps.

The poor girl cleaned it up and placed the shoes where I could decide whether or not to toss them out.  Let's examine that picture for a moment.  Can you imagine me sitting in a conference room at the college on a warm day and the feet start to warm up, sweat and activate that smell? I don't think so.  Both pair went into the trash.

Meanwhile, back at the dining table as she told me the story.  I was so sick and tired that I just stood there and listened.  There was no emotion.  Gary showed no reaction as if he were hearing a fiction novel centered around his life. 

Today, we had to run to the UPS Store to send a document to Florida by Monday.  One of the persons who defrauded us in 2012 was found guilty and had sentencing next week.  We are hoping for some restitution.  Again, Gary remembers none of this and I am the one chasing the dreams alone.

Immediately before leaving the house, Gary used the toilet and we got in the car.  Within minutes of heading down the Anaheim Hills, he announced that he needed to pee.  I swallowed my judgment and anger and asked if he could hold it until we finished mailing the letter.  He said yes.  NOTE TO SELF:  don't believe him.

We went into the UPS Store while I held his hand and led him like a small child.  He again stated that he needed to pee.  While standing in line, he said, "Ada, I'm peeing."

I looked down and saw nothing.  Viola, the diaper worked!  I haven't been so delighted in quite a while.  However, he doesn't realize that his new underwear is actually a diaper and could not understand why his jeans were not wet.  So, he kept feeling himself looking for moisture.  I verbalized that I was glad he was wearing a diaper for the benefit of the guy behind the counter.  He grinned and seemed relieved. Can you imagine overhearing the conversation without benefit of the background.  In retrospect, it was pretty funny.

The next decision was whether I continue to the grocery to pick up three items knowing his diaper was wet or going home, changing him and coming back.  Kids go for a while with a wet diaper, right? 

So ten minutes later, we exited the store (fastest I have ever got him to navigate the store) and went home. 

What a day.....