"Ms. Ada, Gary cried listening to Pink Floyd."

I went away for Christmas and visited my daughter's other family.  They accepted me with open arms and I am grateful for the time together and for the fact that I was not alone.

I visited Gary today.  He was sitting in the sun room at the memory care unit underneath an exquisite tie dyed blanket.  It fit his original personality perfectly.  I asked one of the caregivers from whence it came and she said they got all new blankets and everyone knew immediately this was the blanket for Gary.  In fact, she told me that despite protests from the other residents that on Christmas she played a Pink Floyd c.d. for him.  She said, "Ms. Ada, Gary cried listening to Pink Floyd."  So, after trimming his mustache and nails, I played some great rock classics for him.  He promptly fell asleep.  As I sat next to him, I felt a loss.....not so much for my husband but for the man who could entertain a room and brighten everyone's day.  His eyes have no life left.  I saw no tears.  I cried no tears.  

Various people who loved him read this blog and contact me privately to ask about services.  They too know he is slipping quickly.   

Meanwhile, I live life.  The family is headed to Disneyland on Saturday.  

Familiar Faces Fading

I drew a deep breath as I walked into the Memory Unit where my husband Gary lives.  Nothing in particular caused the stirring in my soul but I felt the need to actively breathe.  I had not been there in over a week and did not know what to expect. I never do.

He was seated at the dinner table waiting on his food.  Well, he was not waiting nor did he have any visible awareness of his surroundings nor existence.  I kissed him on the head and sat next to him.  He was leaning over so far due to his atrophy that kissing him on his lips is no longer a viable idea.  The top of his head will have to do.

His eyes were open.  When his juice and water came, I fed it to him with a spoon.  The consistency is that of jello.  He "drank" most of it. What did not go in his mouth landed on his bib.  The angle created by his spinal atrophy makes it difficult to get anything in his mouth.

The food came and I struggled through dinner.

 

 

He ate willingly as I fed him with a fork.  He still chews and swallows.  His eyes water constantly.  I read somewhere that tearing can be caused by slight aspiration.  There were no signs of that today....just the tearing.

 

 

As I looked around the room, I looked for familiar faces.  Of the 24 patients on the unit, very few are the original residents there when Gary moved in to the unit.  Most were either moved or have died.  As I sat there watching the varying levels of decline, I felt a remarked heaviness.  I look at Gary differently now.  I no longer feel "lovey-dovey love" rather a "I feel sorry for him love".  

 

My husband is gone in every way but physical. I hope he goes soon.  I have accepted it.  My sadness now is not so much for our departed relationship but that the disease takes away all life. It is so unfair. I left him with another kiss on the head and told him that I would see him after Christmas.  Maybe....

 

Today, I spoke to a nursing class at my University about the importance of Advanced Directives.  I am morphing away from the caregiver role but hopefully I can draw on my years of experience to assist others in some way. I was able to talk about Gary's illness, the deaths of my father and sister without any drama or emotion. 

 

 

 

 



I am okay!

For the past few weeks, I have been waking up in the early morning around 2 or 3 o'clock...no reason other than what I call Monkey Mind. Today's awakening happened at 1:58 am. I am currently sitting in my bed typing. 

These moments give one a quiet time to think, reminisce, contemplate and dream.  I often think of Gary in these times but not nearly as much since so much time has passed since he went to Memory Care.  I don't miss him here at home because I bought a house and moved since he was admitted.  He has never been here.  I have found distractions to take place of the hours I used to spend care giving.

I stopped by the pharmacy yesterday to purchase a new beard and mustache trimmer.  His old one was not working properly and he has been looking rather sloppy. In fact, some days he has pureed food stuck in his mustache.  Yuk.  To be honest, I did not buy a new trimmer before yesterday because I kept thinking he was going to die.  I didn't see the point.  How selfish of me.  

So, I bought a new one and proceeded to the visit.  He was awake and in the living room of the unit.  He was watching the other residents in a planned activity of batting each other with "noodles" or Styrofoam sticks.  I took him in his room and used the new tool.  He looked much better and more like my former Gary.

There is a void in his eyes that is bigger and deeper than the immediate past.  As many of you know, I have really struggled and belabored in the past few months wondering why he is still hanging out here on Planet Earth.

This past week, I had some help from our CPA and together, we figured it out....quite by accident.  For 10 years, this woman has prepared our taxes and has seen the height and depth of Gary's business ventures.  I asked her what my tax hit was going to be related to a recent transaction because I was expecting heavy capital gains.  I knew it could be steep and I wanted to properly plan for April 15.

She asked many questions, prodded the facts and figures and had a revelation.  She indicated that we had a significant investment loss a few years back that we could never claim as we did not have the income to offset it.  We can use it this year and there will be no significant tax hit.  She also said that had Gary died already, I would not have been able to use 50% of it.  All things considered, Gary is saving me six figures.  She said to me, "Ada, that is why he is still here.  You know Gary, he was always finding loopholes and he just gave you another one!"

At that moment, while reveling in the truth, I felt the most quiet, contented peace.  I have continued to feel it all week.  The angst of why Gary is hanging on no longer bothers me.  It feels good to be free of that disturbing wonder.

So, today at church I will be lighting the Advent Candle with another lady from the congregation.  Another chapter of my life on the new adventure of being a "single" begins. 

I am okay! 

Not sure what this means.....

I walked into my Gary's Memory Unit on Saturday and was greeted by a caregiver.....well, I am always greeted by one of them as they have to let visitors in the unit by using a locking code.  She quickly told me that Gary had a new roommate. I asked about his abilities and Memory Status so I know how to act while in the room.  

I walked past the living area where I knew Gary was sitting and went back to his room.  Outside his room was a pants rack with Gary's blazer and dress slacks.  This was odd.  Most clothing that hangs in that hallway is used for reminiscing decor.  Specifically, women's hats, dress up gowns, etc.
I found it strange that Gary is still alive but his clothes had been entered into the inventory of memory joggers.  I said nothing to anyone and went back to say hi to my non-emotional husband. 

One of the angels was feeding him his thickened water with a spoon.  He has water spilled down his t-shirt and also water coagulated in his mustache.  She arose and knew that I would take over giving him water.  I retrieved a straw and he promptly drank it all quickly.  For some reason, he drinks it that way for me but when one of them tries, he chews the straw.  Go figure.

It seems like many of my visits now are to supplement the care-giving done by the Unit and by Hospice.  I trimmed his nails, mustache and used a q-tip to remove an excessive amount of ear wax from his ears.  He did not seem to notice or care about any of this.  As I perform these actions, I talk to him the whole time.  I call him by his nicknames "Baberoon, Garball, etc." If he has any recollections, at least he knows that someone who loved him is there.  He often grabs my hand and will not let go.

He often has a tear roll down his cheek.  I wipe it away and tell him I love him.  That is all I can do.

He fell asleep and I left.  I thought of the deaths that have occurred since he started living there a year and a half ago. So many lives are impacted by this horrible disease.  My life has changed significantly and evolved....I have to honestly say my life is better than it has been in years.  

I am blessed to have had a wonderful marriage for 32 years.  I am ready to see what is next for me as Gary moves toward going home to Heaven.