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.....

* 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.

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).

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.