"Yes, I will feed you pie."

Years ago, Gary and I went to the theatre to see the movie "Driving Ms. Daisy".  It was a lovely film about a rich old woman in the old South who employed an older man to drive her.  They became great friends and after many years, as they aged, one day he assisted her by feeding her pie.  I distinctly remember the conversation Gary and I had immediately following the movie. 

"Honey, when I am old, will you feed me pie?"  I asked Gary so humbly.  He answered without hesitation, "No doubt.  I will feed you pie."

Now, many years later, the prediction is coming true only I am the one feeding him.  Most nights, he has difficulty cutting or slicing whatever I serve for dinner.  I have learned to automatically cut everything ahead of time for him.  In the last few weeks, I have also noticed that he plays with his food frequently.  While I thought he just didn't like it or was star gazing, I was wrong.  One night I picked up his fork and started feeding him and he ate very well and much faster.  I tried again the next night.  Guess what, he has difficulty eating by himself.  So, was the movie an omen for the future?  Maybe.  It could have just been a sign of normal aging and loving your life mate.

Yes, Gary, I will always feed you pie....or whatever else you need.

Finding my True North

Many years ago when we lived in the Bay Area of California, we spent nearly every weekend sailing on San Francisco Bay.  In the beginning, I hated it.  Taking sailing lessons was incredibly HARD work because if you weren't doing it correctly, pulling the lines and adjusting the sails was difficult. 

We learned to sail in preparation for the then coming Y2K crisis.  Remember that?  We knew that if the world as we knew it went to hell-in-a-hand-basket that we would have enough skills and supplies to sail out the Delta, under the Golden Gate and off to paradise.  Needless to say, that never happened.  However, nearly $15k later and a gazillion hours on the bay, we were accomplished sailors.  Except for one thing.


Navigation.  Sure, its easy with a GPS.  But, what if....you are out at sea and lighting takes out your electronics.  Your backup GPS got zapped, too.  So, one must know the old fashioned way of navigating the currents, waves and stars.  We took a navigation class at the local Sailing Club which had never failed us.  (Especially the time I ran one of the boats in to the Berkeley Reef and knocked a gash in the keel.  That is a story for another day.)


I failed the Navigation class with a miserable "F".  I just didn't get it.  Not the math, not the calculations....it just took my breath away and for a while, combined with getting my hand caught in a traveler and sustaining an injury that hurts to this day, I almost quit sailing.


There was one concept of navigation that I did understand and that was the Concept of "True North". Find the following description from Webster's Online helpful:


"True north differs from magnetic north, which varies from place to place and over time due to local magnetic anomalies. A magnetic compass almost never shows true north. In fact over millions of years, magnetic north wanders considerable and occasionally reverses so that the magnetic north pole has been near the geographic south pole at some periods in the earth's history. In the arctic region, a magnetic compass is not very useful.
To find true north from a magnetic compass you have to know the local magnetic variation and how it is varying over time. For ordinary folk this is difficult (although good maps will have magnetic deviation marked on them).
















From Websters Online
Finding true north is essential for accurate navigation. Hence the metaphor.  In life's journey we are often uncertain where we stand, where we are going and what is the right path for us personally. Knowing our true north would enable us to follow the right path."




As a person, I always understood that my True North seemed to be my husband Gary.  He taught me so much about love, life, business and now in his Dementia, how to be a caregiver. 


I always relied on him.  If I was ever having a bad day, I would connect with him and he would put me right back on track, like a reliable compass. 


Now, I realize who I thought was my True North is no longer a viable tool.  Just like a GPS on a boat that has been disabled by lightning, Gary has been disabled by Dementia.  So, what is my back up compass?  Good question and I have an answer.


This morning while watching a televangelist (impossible to take Gary to church), I heard that our True North is really God.  Well, duh.  I can pretend all day that I didn't know that already but I'm not that talented an actress or writer.  God is in control of all this that we call life. My brain and anxiety relaxed ten fold. 


It is important to me that I remember this concept when the waves are crashing and we are headed upwind with a strong current in the fog.  Just turn on the back up GPS and set it to True North. 


Many might ask what this has to do with staying sane as a wife whose husband is experiencing the day to day Hell of dementia.  It has everything to do with it.  I hope that any reader of this blog never has to find out how it feels.  Meanwhile, tune into your True North and enjoy the sail.

Urine and Grief

It seems my posts lately have all been urine related.  I am sorry if this offends any of the blog readers but there is not much I can do to pick topics these days.


We had several incidents this week at home.....interestingly, not many accidents happen while Gary is a day care.  We are not sure why but accident free days are accepted with glee.


Laundry seems to also be a hot topic because I do so much of it.  I cannot stand the smell of urine, fresh nor stale.  So, immediately following an "oops", I do laundry.


Weekends have now become stay-home-and-get-stuff-done days.  I make no plans to go anywhere as it is too taxing on me to take Gary away.  I have arranged for a caregiver one whole Saturday this month so I can finish arranging the garage which was mostly never organized nor unpacked.  There is probably a large charity donation in the works.  I am looking forward to that day .....just so I can be free and have no ties. Just need to feel some personal accomplishment.  Sad, I know.


I am also thankful for a carpet shampooer.  One thing I will add to my personal resume is "carpet cleaning expert".  Just because one is good at a task does not mean they like it.


"Gary, why did you turn off the t.v.?  Gary, turn the t.v. back on, please.  Yes, I will show you how."


The conversations between us are very shallow now.  Today, I came downstairs after a nap.  I listened carefully for him to awaken.  I missed it until he was in the hallway with a dripping penis.  There is no recollection in my recent life of me running upstairs as fast as I did.  I managed to pull his diaper in front of the stream to stop the flow.  I screamed "stop!!!!!! but he was in a fog....not hearing nor reacting to anything." 


After cleaning the carpet, he was sitting on the sofa apparently feeling sorry for himself.  It is amazing what he does and does not remember.  He knew he had done something to upset me but did not know what.  I was emotionally overwhelmed and put my head in his lap and started to cry.  I did not know what to expect.  In the pre-dementia days, that would have invoked an "I'm sorry" and patting my head until I recovered. 


Not anymore.  He did not move his arms from underneath the blanket and just sat there.  He did say "Oh, my."  No other response was given.  I immediately felt like I was wasting my time licking my wounds and sat up, sucked in some air and moved on to another task.  Guilt is a powerful emotion.


I have turned to the emotion of grief in moments like this.  My true husband is not there.  In fleeting moments when he does show up....well, I cherish those.


Meanwhile, I fight the waiting-on-insurance battle to start the next round of Neurology appointments.....I guess I am still holding out for a miracle.

I hate the smell of Pine Sol.

I sometimes wonder why things happen the way they do.  I know that God has a plan but more often than not, I do not behave in such a way that is worthy of putting me in charge of this particular portion. 


I'm sitting here on a quiet Saturday afternoon abhorring the smell of Pine Sol.  As I type, my mind is confused by love, detest, anger, incontinence, loneliness, grief and confusion.


Gary and I went to the Neurologist yesterday to learn if there was any new news on his condition.  After an MRI, and EEG and extensive blood work, he appears to still have Dementia.  What an evil word.


This doctor indicated that he thought Gary was misdiagnosed almost three years ago.  He was right.  His dementia is genetic and rare due to his age.  There is no help nor hope beyond what we already have.  Gary has been referred to the University of California Irvine's Neurology Department for further testing.  It is for pure science only.  I'm not sure its worth it other than it may give answers to others.  It may help the next generation.


So today, we went to the pharmacy and Gary moved at a snail's pace.  I drug him through the store.  I fought him as he demanded to properly park the store buggy in the return spot.  I flamed as he straightened the rug in the store.  I fumed as he fixed it again.  I can't pull on him anymore as my hand hurts.  I can't motivate him with words.  I'm frustrated.


We came home and I put him down for a nap and had a drink.  After about 30  minutes, I got in the massage chair.  It comforted me until our dog, Diva came downstairs.  I knew something was wrong by the way she acted.  Upon reaching the bedroom, it was obvious  because she moved quickly out of the way.  Gary was lying on the bed, fully clothed and dry.  He said, " I'm sorry but I peed on my feet and my pants."  His crotch area was dry.......so, I turned around to see the closet door open.  It had been closed on purpose when I put him down for the nap.


Dammit.  He had opened our cabinet-enclosed dirty clothes hamper and peed in it.  (It was empty).  It ran down the cabinet and into the floor just missing my blazers.  I yelled, I questioned and I screamed.....all for naught. He has no reason other than he has Dementia.  


He is still in bed, numb, as am I.  He just can't be alone....at all.  Not unless I want a catastrophe.


I need to go apologize for yelling.  He does not deserve this.  I do not deserve this. 


I have more laundry to do now. I hate the smell of Pine Sol.


If I didn't love him so much, I would hate him.    Instead, I hate the disease.

Two Steps Forward and Twelve Steps Back

I often feel as if I take two steps forward and twelve steps back...

Its only Tuesday.  Up until today, Gary was having a better than normal week in that he only rolled down the window in the car twice, took his shoes off in the car once and had no accidents.  All weekend I was able to stay on top of him, stay home and watch him every minute.  We had no accidents.

Today, I came home later than normal after a visit to my own doctor and a trip to the salon for a new spring cut.  I have my own minor health concerns that are going to require a militant diet for awhile and some lifestyle changes.  I accepted all that before the salon and got a sassy "do".  It felt good coming home to a caregiver, Jessica, Heather, Gary and Xander.  They all liked my haircut and I was feeling pretty good despite the adversities that seem to mount daily.

Then, after I had a salad for dinner I started to fix my morning smoothie, open Amazon deliveries and do general stuff.  If you have not been around Gary lately, it is important to point out that while sitting in the massage chair (or anywhere else), he talks incessantly and calls out of whoever he thinks is in the room.  It gets very difficult to have so many "false" calls.  I find that it is much like the Boy Who Cried Wolf.....sometimes we just tune him out to attempt to stay sane.  That "silence" has its price.

I heard him talking while I was searching for the blender......and while I blended my smoothie, and while I was cutting open boxes.  I looked up and saw him in our massage chair, zipping his jeans.  Usually that means he needs to go to the bathroom.  As I approached him and asked if he needed to do, he said, "No."  That is because he had probably asked for assistance and I did not hear him.  He had taken out his penis and peed outside of the diaper and soaked his jeans, belt, shirt, socks.  I do not know how he got that much pee out of his body and all over everything....including the chair.

I took him upstairs to change him and put the clothes in the hamper.  Upon going into the master bath for the first time since arriving home, I told him to stand on the tile so I could undress him and not get pee on the bathroom rugs.  No need to worry about that as I realized he had already peed there earlier and soaked one of the rugs.....apparently he had awakened from his nap earlier and went toward the toilet.  So, its not that his kidneys are incontinent.....its his brain that doesn't kick in and get him to the toilet.

So, I reprimanded him and felt like a yelling jerk......he is not going to learn.

So, the industrial size washer is doing its job on clothing and rugs while I cleaned the chair and saturated a bed pad with "Urine Destroy".  Two steps forward......how many back?

Sometimes, I think that every time I get ahead or have a win or a moments' peace that the Universe says, "Oh no.  Not today."  My rational mind knows that is untrue but my emotional side wants to say "F(&^% you" to the Universe and run away.  I will not do that as the stubborn side of me thinks that I will win this war.......eventually.

ESCAPING: not an option

I don't like myself when I am upset with Gary.  The thought that came to mind this morning was:  "The very man who spent years building me up and ensuring that I was strong and successful is the very man who is now tearing me down."  Some might say that is a selfish way of looking at the situation.

Well, in some ways it is selfish.  After all, he is the one suffering from a horrible disease.  He has lost functionality and enjoyment.  He has lost his career and all that implies.  He can barely write his name now. 

On the other hand, I am the one who wakes with him in the middle of the night to try to steer him to the bathroom to avoid accidents.  I change his clothes in the middle of the night when he doesn't awake in time and has a "slip". I shower and shave him.  Dress him.  Groom him.  Guide him.  Love him.  Discipline him.  Remind him.  All those things take their toll on the caregiver.

Yes, I have help part of the day but the weight of it all rides me all day, every day.  Even though I use work to escape and still enjoy my career immensely, there are times on a break, looking at photos in my office, or on a drive home that I cannot help but think about what ifs or what was.  It is a living grief process. 

I buy my own birthday presents, make all the decisions (have to get input from trusted folks rather than Gary) and live in what feels like a vacuum.  So many times, I just want to escape but I am too responsible. 

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 you.....you 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.

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

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.....

Urine Chronicles - The Prequel

I would like someone to explain something to me. The answer will satisfy my curiosity if it comes from a male or from a female who stands to pee.

Twice now, I have left Gary standing at the toilet preparing to urinate.  Twice, I have left him alone for privacy and walked away.  Twice, he has saturated his pants and socks while standing at the toilet with his penis in his hand.  This last time, he was still standing there saying that he was trying to pee but couldn't.  The only thing I can figure is that he is indeed peeing but not aiming well and missing the toilet and it is just running down his pants.  Thoughts? 

I know that it is weird to inquire but the logic behind how this keeps happening is driving me nuts.  The "adult underwear" is not working because he doesn't often lose control.....but when he does, we will be ready!!! This is more of a Gary-is-not-aware-of-his-pointer or the-stream-is-not-fully-flowing issue.  Any advice would be considered and appreciated.

I am keenly aware that a solution is to go with him every time and supervise...can't do as I am not here all the time and the poor caregivers may not want to do that.  He has the mind control, for the most part, to not go in a diaper.....we are in between urine problems.  So, I have named this blog "The Urine Chronicles" with the hope that there is no sequel.

We start with a new caregiver on Monday.  I'm sure there will be a story or two in our future.

* Edited: There is no sobbing tonight. I am numb.

**This blog has been edited as the original was misleading.  I realized that in it, I hurt my daughter Heather's feelings in that it appears I was furious because they keep their door locked.  Quite the contrary.  I am in complete agreement that they keep their doors locked as Gary has been found sleeping in their beds and being there when he shouldn't be.  I was furious with the world and with Gary, not Heather and Xander.  In fact, had the door not been locked, he most likely would have peed in their room as opposed to the hallway.  So, I'm glad she let me know she was hurt....I had another good cry because of it. I love you, Heather.


Today started normally.  Gary and I got were awakened by Xander, our 4 year old grandson squealing about something he considered delightful.  I got up and went to the kitchen to make coffee and breakfast since we can no longer go to church. 

My thoughts were on taking down the Christmas tree and doing some tax preparation. After I finished breakfast, I left Gary at the table while I went upstairs to go to the bathroom.  I was gone about five minutes.  As I walked out into our upstairs hallway, I witnessed Gary standing in the hallway next to a locked bathroom peeing. 

After inquisition, screaming and lots of anger, it was determined that he had to go badly and rather than ask where the bathroom was, he attempted to follow me.  Since Heather and Xander keep their doors locked, he stopped to try those (as he does frequently) before losing all hope.  I was furious.  Knowing that I had a problem, I moved him into the shower and began the clean up process.

I grabbed the carpet shampooer and started the clean up.  In the middle of sucking the now clean water out of the carpet, the shampooer stopped working.  It has been used since Diva was a puppy, so I guess it was to be expected.

I rushed Gary through a shower and did some quick research on a good buy on machines. Once dressed, we took off for Costco.  Gary seemed VERY unclear all day.  As we arrived at Costco, he was moving at a snails pace.  He said he was not in pain, but just moving s-l-o-w-l-y. 

To save time, I asked the door attendant where the carpet machines for sale are kept.  She directed me to the right aisle and amid hundreds of crazy shoppers, I found them.  They were on a shelf and very heavy.  At this point, I was very overwhelmed by Gary, the reality of the situation and the crowds.  I said to him 3 times, "Gary, please help me get this box down."  I guess on the third time I was very forceful and loud.  A couple standing nearby assessed the situation and by the look on the man's face, he knew Gary was not responding and jumped in to assist.  The man told me to stand back while he moved the box and his wife held the buggy still.  I started crying. 

My emotions zoomed from thankful to embarrassed to dependent to pissed off.  I thanked them for their help and they said, "Have a happy New Year!".  God's servants are everywhere.

I did all I could to not lose it in the store.  I choked back the tears.  There was so much traffic in the store and in the parking lot, that I made Gary walk behind me and hang on to my jacket so I would know he was there.  Once we reached the outer parking lot, I put the box in the car, took back the buggy and joined Gary in the car.  I sobbed.  He just sat there.  Finally, he looked at me and asked why I was so upset.  I told him all the reasons.....

We got home and I assembled the machine and shampooed the hallway and our bedroom.  Well, why I was at it, I also did part of the stairs.  The machine has some very cool attachments. Halfway down, I would have had to move to a downstairs electric outlet and realized I was tired.  I've been fighting a head cold and headache for days and determined that I was overdoing.  So, I put the new machine away.  I put the old machine away....at least until I can put it out for garbage. 

Oh yes.  The Christmas tree also came down and was stored. 

After fixing Tamales for dinner, I sat down to write this blog.  Prior to that, I walked Gary to the bathroom and saw him in front of the toilet.  As per usual, I said, "Close the door, put up the toilet seat and then flush."  I closed the door behind him and walked away.  A few minutes later, he walked out and went to the coat rack to put on his jacket.

I asked where he was going and he replied, "Nowhere."  I asked why he was putting on a jacket and he replied, "Because I peed all over myself." 

I looked up and sure enough, despite standing in front of the toilet, he didn't make it.  What was he doing all that time?  He has no recollection.

So, we have finished the second shower of the day and the second urine related load of laundry.  The expletives were flying.

I knew I would know the right time to start using diapers.  They have been preventative until now.  Today, they are going to be part of life.

I don't know how long I can do this.  There is no sobbing tonight as I am numb.

"Ghost Busters" revisited. I have turned into a monster.

Gary and I have been at my Dad's house in Virginia for 7.5 days.  I love being around this side of the family since we are not together often.  Since being off work and having "downtime" I have learned a few things.

In the few days prior to the flight here, I had worked up an incredible anxiety over being able to manage (or not) Gary during the flight.  Even though he has only had a few accidents, I worried about him and had him wear a diaper. We had no issues.   I was concerned about the 40 minute scramble in Atlanta.  No issues as the attendant was right there to wheel him to the bathroom and get us to the next gate....which was right across the aisle from our arrival gate. All the planning paid off.  I'm too hard on myself sometimes. And at the same time, had I not planned so well it may have ended differently.

As we picked up the rental car and I had to leave him for two minutes while I walked seventy stalls down the airport garage, I worried he would leave. The attendant said she would watch him.....but would she.  It all turned out well until I pulled up the curb, had him get in the front seat and while I moved to the back of the vehicle to unload the luggage, he locked me out.  It was 28 degrees outside and I was pounding on the window for him to unlock the door.  He just stared at me.  After screaming at him enough, he unlocked the door.  The poor man working at Budget saw my dilemma and held the back door open long enough for me to get in before he locked it again.  I told him that I wished the disease of Dementia on no one he knows.  He said, "Merry Christmas." 

On a side-note, no one here says "Happy Holidays".  There is no such thing as political correctness and I
have found myself delving into gossip and unnecessary caring about others' business.  It seems so silly to be caught up in such minor issues....but it is natural here. 

On the two hour drive, Gary must have clicked the door lock and window at least 400 times.  I could not get him to stop no matter what I tried.  Eventually, I was a wreck.  His anxiety level was not helped even with my magic trick Sedalia.  We arrived safely at my Dad's house and the vacation began.

It has been a quiet week.  We have barely left the house except to run errands, go to eat and some visits.  It is restful except for Gary being confused.  I find that my highs and lows of patient (my patience) behavior are more radical.  When things are calm, I am better able to cope with his constant needs.  However, in a small bathroom, with no air vent and a leaky toilet (new one on the way), I find my patience with Gary's needs non-existent.   The best of me as a caregiver is good.  The worst of me as a caregiver feels evil.  

I watched "Ghost Busters" recently.  When the the evil ghost takes over the body of Sigourney Weaver and floats above the bed, one could substitute my face for hers.  At least, that is how it feels when the rage takes over my emotions.  I can't imagine ever hurting him, but the imagination can run wild.  

I am exhausted.  I sleep well here except for having to take Gary to the bathroom each times he needs to go.  He can't find the right room, nor the light switch (2 feet higher on the wall than at home), nor the raise the toilet seat, nor hit it squarely.  I have cleaned the floor here waaaayyy tooo many times in one week.  Then, I have to wait for him to go back to bed.  Now keep in the mind that our bedroom is three feet from the bathroom.  He just can't find his way.

So, in my spare time, I have thought of the twelve days of Dementia Christmas and would like to share with you all.  Please feel free to sing along. I'll start at the end....work your way backwards. 

On the twelfth day of Christmas, my husband said to me...
"Where is my comb? (11)
When do we go home? (10)
My socks don't match. (9)
I can't find the toilet. (8)
Can I have more coffee? (7)
Where is the dog? (6)
Hey, Ada Mae....(5)
What is his name? (4)
When do we leave? (3)
Gee, I'm very hungry. (2)
and a Loving wife who's gonna go nuts! 


We have two more days here and a early morning foggy drive over the mountain to the airport.  Please continue to pray for miracles.  We get them everyday.  

For all the other caregivers reading this.....there is a New Year coming.  Hoping for changes is scary because so far the changes have all been for the worse.  But FAITH can take you through it all.  Just enjoy the good moments.  

Merry Christmas everybody. 

I am pooping....

Gary and I awoke this morning with smiles on our faces.  He seemed to be a little clearer than normal....while we were still in bed.  It didn't last long.


I went down to the kitchen to make some fresh ground Starbucks Christmas blend and decided to make a breakfast casserole.  We enjoyed our breakfast and headed to get showers and start our day.


Most days now, we shower together so I can shave Gary and assist with hurrying him along.  He has always liked long, hot showers.  Now, though, he would shower until the Flash Heater burned before he would get out of the shower.  So, I help....


We had gotten out of the shower and I had dressed.  Gary was standing at MY sink, using MY toothbrush.  One tidbit that the reader should know is that Gary talks incessantly most of the time so it is easy to start tuning him out.  It is unfortunate but it is form of sanity preservation.  Anyway, I tuned in when he was brushing his teeth, in his underwear, and stated "I am pooping".  What?????


Sure enough, he went right in his underwear less than two feet from the toilet.  I will spare the details....the yelling, the scolding, the smell, the extra shower and the laundry. 


Now, several hours later he is taking a nap.  No more issues.  Thank you, Lord. 


I am not cut out for this type of servitude.  Pray for my strength and his constipation (just kidding).

The Case of the Haunted Jacuzzi

My cell phone rang late in the day.  I saw Heather's picture and knew something was wrong as she only calls me in an emergency....or something REALLY strange.  I'll give you one guess which case this was....right, REALLY strange.

Heather:  "Do you have a Jacuzzi tub in your bathroom? How do I turn it off? Dad turned it on somehow and I can't turn it off.  It sounds like a truck idling from downstairs but I came to check on Dad and it is the tub!  In the background I could hear Gary going on about some totally different subject.  While humorous, I had to focus.

I asked several questions, like did you turn off the button?  There was only  a knob sticking up and that didn't work.  She texted me a picture of what looked more like an air duct usually found on the side of the tub.  We have not used the Jacuzzi since we moved in so I was not sure.  I told her to fill the tub with water so the motor would not burn up since she said it had been running for quite some time.

I then suggested she go the breaker box, find the one marked tub or Jacuzzi and turn it off.  Gary was still in the toilet stall so she left him, went down all the stairs, grabbed Xander's toy flashlight (it worked) and headed for the breaker.  Vioila!  She found the right switch and turned it to "off".  Or so we thought.  She went back upstairs to check on Gary (no gym membership required in this house full of stairs!) and found the tub still shooting water to and fro.  I could hear it roar in the background. 

I asked if the water was above the jets.  She replied affirmatively.  She had to leave to get Xander from day care and I was too far away to do anything.  She assured me there would be no flood so I decided it was ok until I got home over an hour away.

When I arrived home, I put on a pair of shorts to get in the tub since the spigots and the drain are on the far end of the tub (pretty stupid design).  I also tried the button which looked nothing like a Jacuzzi button I had ever seen.  Water had started to splash all over that side of the bathroom.  Since she had followed my initial directions and turned the brass button one way and then the other, the air was on full spray and doing its job.

There was no button that looked anything like a switch.  WTF?  If we couldn't find the button to turn it off, how did Gary turn it on?

Then, I remembered a silver switch on the wall behind Gary's bathrobe.  Remember when you were a kid and you went to a hotel that had a heater in the ceiling in the bathroom that had a timer switch.  Yes, one of those.  All this time, I thought it was a heater switch that we never needed.  It was stuck on zero.  Or at least there was a fine line between zero and sixty minutes.  He had turned the knob all the way around, it turned on the Jacuzzi and got stuck in an on position.  I turned it off the a moment of peaceful quiet after the raging waters from moments before!

So, how did it not turn off when Heather cut the power?  So, I too used the toy flashlight (three other flashlights in the emergency area did not work) and headed for the breaker.  It was off.  Again, there is no explanation for how the Jacuzzi continued to run with the power "off" but it did.  Crazy house. 

So, after a day of audits and regular work, I mopped the floor while explaining the answers to all of Xander's questions.  "Why did you open the shower?  What is a sponge?  Why is there water everywhere?  What is that thing in your hand called? Why is it called a mop?  Why did Papa turn on the bathtub? Why are you standing in the bathtub with your clothes on?  Why are you letting the water out?"  And.....etc.

So, as per normal, rather than trust that Gary will remember not to use that knob again when he is trying to turn on the lights...I got out the duct tape and covered the switch so it cannot be used. 

I then remembered that I needed to double check that Gary's CLUB remembered to have him wear his jacket home (that is another topic for another day).  Of course, Heather reported that  he did not wear a jacket home. I was close to blowing a gasket after spending almost a half hour prior to work this morning watching a social worker at day care run around looking for Gary's clothes from when he had an accident and came home in someone's spare clothes. 

Tomorrow morning, when I take him again, I will need to go in, find the social worker and make a real stink.  Why is Gary the only one who comes home without a jacket?  Or is he?  Perhaps I have uncovered a significant problem there? 

I have been known, on occasion, to be very vocal. I should be plenty warmed up by morning....look out world!

Public Embarrasment

Sometimes I feel punished.  I know its a mindset but it is difficult to not get bitter.  Anger is certainly an emotion that enters my heart near daily.  Why do I have to change my patterns, errands and wishes because Gary has dementia?  If I chose to get a "sitter" all the time, or impose on Heather more, I could have more freedom.  He is not so far along that I feel that is right either.  So, I'm stuck somewhere in the middle of this already in-between comparison to Hades.


Last Sunday, I took Gary to church.  It is a loving group where we have worshipped before since moving to Anaheim.  Because of Gary's constant repetition of many words he hears and due to his verbal processing (often loudly) of most thoughts, I am always on edge waiting for what jewel he may drop on humanity next.  Sure enough, a few minutes into the Pastor's sermon, Gary stood up.  I pulled on his jacket to get him to sit as I knew whatever he was processing was paragraphs behind the poor man's sermon.  I managed to get him to sit down without too much noise or shuffle.  Then, he started reading aloud the bulletin which I gave him to hopefully keep him quiet.  I tried to quiet him with the ever-dependable "shhh".  He merely repeated the noise several times growing louder with my frustration.


I could tell the folks in front of us were a little un-nerved.  How to handle? When the Pastor asked for folks to stand up who were ready to commit their life to Christ,  Gary took the opportunity once again to stand.  Well, who am I to keep the man from re-giving his life to Jesus....even though he was probably hearing some other message.


The rest of the service was uncomfortable for me.  Of course, the anger started.  Is it lack of control that invokes the anger?  Is it embarrassment?  Yes.


Then today, he really needed a pedicure.  I can't effectively take care of his feet so I choose to have him professionally soaked, massaged and clipped every so often.  I haven't found the right person who completely understands his behavior, needs and quirks.  Today, we came close.  The lady doing his manicure (I just asked for a pedicure and he decided LOUDLY, that he too needed a manicure) was very sweet and spoke English in a tongue he could clearly understand.  She told him that we were treating him  special because his birthday was this month.  He treated the entire audience within the salon's hearing range with his signature "Yeah, yeah, yeah!" and "That's more better than good."


The other discomfort for me is not knowing how loud he will be or what he might say.  (for example, he told the woman she had nice breasts and asked if he could touch them). I apologized and told him his behavior was inappropriate and that he needed to stop and that certainly he could NOT touch her. She understood, laughed and said she understood.  I watched her body language for several minutes and she really did seem to accept his mental disorder.  There was a woman around my age who was there with her adult daughters.  She sat next to him and talked to him while my procedure was being finished.  She asked how long he had dementia and that she had a friend in my "situation".  All I could say was that I was sorry for her and that I wish the disease on no one.  I gave her the blog address for her to share.  Perhaps it will help someone else.  Perhaps it is a hell that they would better cope with if they don't know what is coming.  I'm not sure that I want to see the future. 


There seemed to be a sigh of relief when we left.  All employees were tipped very well.  I will have to consider whether I go back to the same salon or find a new one.  Do they want our business?


So, one should be able to see why I am beginning to think that I can't take him anywhere.  I guess I will have to start shelling out additional dollars for a sitter, even for routine errands.


I will have him from Wednesday afternoon until Monday of next week due to the Holiday.  Heather and Xander are escaping for the weekend. Escaping.  Yes, I said "escaping".  Bless them both.  They put up with so much.


Pray for us all.  Sometimes being a part of a family and having committed to a relationship is hard.  I will not let him down.