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.

Loving my Husband....

The things that I love about my husband are numerous:

He is very sweet and concerned about my feelings most of the time.  He feels my pain and says he is sorry even if he doesn't understand the simplest of reasons.

He loves me and recognizes me.

He loves hot coffee in bed in the morning.

He still sings "I Left My Heart in San Francisco" when it comes on in the car....

He still loves to "play drums" on everything he finds....except for his drum set.

He loves our dog and is still sensitive when she is scared from a storm.

He knows his grandson's nickname is Xander and is concerned about his welfare.

He has given me permission to make the everyday decisions I have to make because he can't help me anymore.

He is still polite to others.

He still knows all his nicknames and sometimes calls me by mine.

He is not the full man I married but I love him till Death Do Us Part....no matter what that means.....

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.