Saturday, January 7, 2017

"I'm Not Gonna Miss You"

The Hospice Nurse called me last night to tell me that Gary's X-ray came back showing no injuries.  No broken bones.  So, he has been getting Tylenol as needed.  His wrist has been swollen and pained for a couple of weeks.

Today, I reached the "Happy Place" around 10:45 and his hand looked almost normal.  He was sitting in his wheelchair among the other residents listening to the Activity Director and mostly snoozing.  I said hello but did not pull up a chair next to him because I would have blocked another resident, Nancy's view.  I really don't think she knew anything going on and she probably wouldn't have known that I was blocking her view but she is an old lady so I have to be nice.

I felt like a fish out of water because I didn't really want to sit down with the residents so I checked on Gary's room, sorted the clothes in his closet, and plugged in his beard trimmer.  I went back to the living area and sat down directly across from Gary about 5 feet away and listened to the stories being shared in the room.

Around 11:45, he suddenly woke up, sat up straighter and looked right at me.  I said, "Well, there you are!  Hi babes!"
As usual, he had no visible reaction.  There is no emotion to be found on his face anymore.  Here is the look of FTD.
I fed him lunch.  When I first entered the unit this morning, one of the angels stopped me and asked me to bring in a thermos cup with a lid so Gary can pick up his own hot beverage.  She says that he tries to pick up the coffee cup and is able to drink, but has coordination issues with sitting it back down and spills the liquid.  They tell him that this is okay but she detects that this embarrasses him and then he doesn't try again.  She senses that the cup would help him be more independent. 

He seemed troubled today.  I don't know why he would be other than the fact that maybe today he is more aware of his situation. 

I wheeled him into his room for a beard trim.  Afterward, I played some songs on my telephone.  He showed no reaction.  I held his hand and rubbed his arms.  I played Glen Campbell's song about Dementia "I'm Not Gonna Miss You".  He seemed to listen. It made me sad.  Please find the lyrics below:

"I'm still here, but yet I'm gone
I don't play guitar or sing my songs
They never defined who I am
The man that loves you 'til the end

You're the last person I will love
You're the last face I will recall
And best of all, I'm not gonna miss you
Not gonna miss you

I'm never gonna hold you like I did
Or say I love you to the kids
You're never gonna see it in my eyes
It's not gonna hurt me when you cry

I'm never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains

I'm not gonna miss you
I'm not gonna miss you"

Written by Glen Campbell, Julian Raymond • Copyright © Warner/Chappell Music, Inc

I heard the other residents exercising in the other room, so we went there and I attempted to get Gary to move to the commands.  Nothing.  So, we sat there.  I held his hand until he fell asleep. 

As I was sitting there watching him sleep, three of the residents began a conversation.  The room is very open and there is no privacy. One of them was the others about her mother having Dementia.  She explained how her father had taken care of her mother for years and how difficult it was on him.  She expressed that she hoped she never got Dementia because she did not want to be a burden on her family.  All three of the other ladies also lamented that they, too wished that they never get it.  None of them know that they are in a Memory Unit because of Dementia or Cognitive issues.  Listening to the conversation was rather surreal.

Then, they started discussing the need for individual phones in their rooms so they can call their loved ones.  The devised a plan to go to the office and have a conversation with the manager demanding that phones be installed in all their rooms for a $5 per month fee.  They said that when they "check out" and go home that the fee could be transferred to another resident.  I was quite impressed with their plan.  Then, the phone on the unit rang and one of them said, "Perhaps we should answer it." Another one said, "Oh no.  They have a whole bank of operators in the back room that handles all the calls and they will come get us if its for us."  Absolutely all of this was fabricated in their minds.  However, they all agreed that this information was the truth and they started talking about the weather. 

I am always amazed at how God enables these folks to not suffer but instead to carry on as if they were spending the afternoon at a country club.  It was beautiful.

Normally, Gary takes a nap and has a routine changing at 2:30.  His caregiver came to move him into his room and so, I left.  He always needs two people to assist him.

Wal-Mart was the most logical stop for purchasing the cup and some Dixie cups for his dispenser.  On the way back home, I stopped by Gary's to drop off the cup.  He was sitting out in the hallway wide awake.  Something was wrong.  The Care Manager came over and explained that for the first time, Gary was unable to help them by standing to move him from the chair to the bed.  Apparently, for six months, he has been able to stand long enough for them to safely change him and get him to his nap.  Not today.

So, they were retrieving a machine from the Assisted Living Unit that would safely move him to the bed.  They were reallocating it to his room when I left again.  Wow.  Reality.  He could be back to his "normal-not-so-normal" self tomorrow or he could now be totally reliant on people moving him.  Dead weight.  Only the Lord knows what tomorrow brings.

The hardest part of having a spouse with Frontotemporal Dementia is well, everything.  I can't heal his disease.  I can't live normally without guilt.  God is in control and the spouse had no insight.  Each phase of this horrible disease is unbelievable. 


  1. I watched the "I'll Be Me" documentary about Glen Campbell on Netflix over the holidays. Very moving.

  2. I am anxious to read your blog each day. My name is Penny

  3. Hi Penny, I usually write a new blog a couple of times per week. Please feel free to go back and read the older posts as they might be valuable for you. Go to the beginning and it will show the progression of Gary's disease.

  4. I'm so glad I read this today.