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.

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.

Caught in Hurricane Ada

I had a dream last night.  In the dream, Gary and I were on a sailboat somewhere on the ocean.  The conditions were similar to a time when we were on a sailboat in the West Indies in the middle of the night, riding out a squall with 40 knot winds (this really happened to us).  The boat was rocking and surfing the waves while the fear of not being in control was very real. Panic had set in despite the fact that the crew and captain were well in control.

When in a storm on a boat, if waves and winds get unsafe, the first step is to put out a storm sail.  That is a smaller than normal sail that gives you more control of the boat.  If things get really bad, you can perform a maneuver called a "heave to" which stops the forward movement of the boat and gives you a few moments to breathe while you rest or possibly check the conditions of the boat. 

In my dream, we had done all those things.  I kept hearing water running and slightly awoke to realize that I was not in storm conditions and the sound I hear was Gary peeing. Since his Dementia diagnosis, I normally awaken when he leaves the bed at night.  This time, I guess due to the "storm" I had missed him leaving the bed/boat.  He was standing in the bathroom adjacent to our bedroom peeing on the floor, trashcan and decorator baskets.  I screamed at him as if he were about to go overboard.  (Had we been on a real boat, he might have been in danger of being pushed :)) He was five feet from the toilet and was in a dazed state - or asleep.

At 1:30 am, the rest of the story included clean up, questioning and a tremendous amount of meditation to try and counter the adrenalin/fury.

Back to bed.  He remembers none of it. I remember every detail.  Yuk!

So, there is fatigue on the horizon of today.  I started thinking of the comparison of my current life as it relates to the storm analogy in my dream.  If I can remember my sailing experiences and make sure I just always assume bad weather and sail nothing except a storm sail, maybe I can remain in better control.  If I can remember when tired to "heave to" and stop the chaos, I can think and rest a moment.  I still do not have clarity on how to stop the waves and wind of dementia but if I keep these tricks in mind, I may not join him in the insanity. 

Another trick might be to pretend that I am in the eye of a hurricane.  Winds are raging all around and there are unsafe and confusing particles flying everywhere....but for the moment, I am safe in the eye.  Now, if I can just stay here.....I used to joke about being called Hurricane Ada.  This is NOT what I had in mind.

* 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.