Sunday, October 30, 2016

Tremors take over the body.

The reality of what this disease is doing to my husband really hit me today.  I went to church and out to lunch with some people from church.  Usually I go straight to Gary's after church and make sure I get there in time to feed him.  Today, I thought I needed "me" time, so I took it. 

When I got to the living room at the Memory Unit, Gary was not in his usual place.  I must have looked puzzled and one of the caregivers said, "They are putting Gary to bed, he was sleepy." 

I went straight to his room and saw them putting him into bed.  It was reported that he was very clammy, sweaty and had experienced several of his tremor sessions.  I did notice that he was clammy yesterday but it was 80 degrees in the room and thought it normal.  Today, he has no fever but was extremely clammy to the touch.

They put him in his favorite T-shirt and put him to bed.  I said hello and puckered up.  Then he started shaking, tremoring and looking absolutely terrified.  I held his hand and told him I was with him.  After about three minutes of his entire body shaking, his neck going stiff and his arms tremoring...he stopped.  He looked at me as if to say, "What was THAT?" 

We called the nurse and we spent several hours watching him sleep, tremor to near convulsions and sweating.  I can honestly say that my heart is truly broken.  I never thought I could feel so all alone and empty.  I am absolutely convinced he feels even worse and cannot articulate his emotions.

As 2:00 came, I knew that the Pastor from Calvary Chapel would be there with other worshippers. Gary's room is very close to the worship and we could hear the singing.  I put a cool cloth on his head and wiped his brow to relax him.  He went to sleep hearing "Rock of Ages" and "Power in the Blood".  I sent a message out to ask the Pastor to come in and pray with Gary before he left.

He came in and read the Lord's Prayer and other scriptures.  Gary listened intently and said "amen" at the end.  Then, he had one of those life sucking tremors.  God was certainly represented in the room.  It was the only comfort I have felt all day.  He prayed for Gary with a depth I haven't felt before....perhaps because we needed it so bad.  God is good.

After a few hours, Gary was re-dressed and taken out to the living room for dinner.  He was no longer sweaty.  They are checking him for a UTI, diabetes, etc.  He was exhausted physically and me emotionally.

I walked away numb.  Ironically, a lady at church asked me if I ever cry or do I just smile all the time.   Well, today I cried as silently as one can.  I refuse to cry in front of Gary.  I refuse.  He has enough issues without seeing me upset.

As I drove away toward home, my thoughts turned to "what do I do?"  Do I turn around and go back and spend the night with him?  No, my only help in being there is to hold his hand.  I know he needs me but right now I am very weak.  I turned it over to GOD and drove home.  I can only anticipate what the next few days, weeks, months or even years will be like.  God is teaching me patience unlike any I've ever had.  I am not sure why...but honestly, I don't like it. 

I will call tonight before bedtime for a report.  My guess is they will adjust his medication and it will slow the tremors.  He brain is doing exactly as predicted by the experts.  It is effecting various systems in the body.  I have to remember there is no cure and that someday this will end. Heaven help us all!

Saturday, October 29, 2016

Ada, how have you been?

"Ada, how have you been?"  A call came from one of Gary's former business contacts and I tried to explain. I know that I have talked to him in the last year but have no recollection of what he knew.  I explained that Gary is now in Memory Care and probably has no knowledge nor memory of him. 

Most people have no connection to our current reality.  I found it interesting trying to explain Frontotemporal Degeneration and what it has done to Gary.  For those who knew him before, even by telephone, it is difficult to grasp the disability.

Today I made to the Reminiscence  by 10:00 am and found Gary sitting in his wheelchair in the main living area grasping a massage ball and chewing on the plastic handle.  His eyes were tight shut but he was wide awake.  I kissed him hello and was confident in his response that he knew I was there.

I held his hand for awhile and then took him into his room to clip his finger nails and trim his beard.  As I stood over him to clip his moustache, he opened his eyes and looked at me with that blank stare that only comes from one whose brain is somewhere else.  He kept saying, "Ada Mae.  Diva Gerl (our dog). "  He has no sentence tied to the pronouncement but he still knows our names.  I told him that Diva Gerl as at home. THen, I realized that about a month ago, I did bring her here and he was sitting in the exact same place where I had presented her to to his bed.  There had to be some recollection on his part.  Perhaps I should bring her back? 

His face seemed oily and I knew he would hate that.  I washed his face and he reiterated that it felt good. After finishing our grooming, we went back to the living area where the Care Manager was meeting with the residents and discussing current events. Gary had his eyes tight shut but was listening and repeating different points that he heard.  I sat next to him and held his arm and hand.  He still squeezes my hands and kisses the back of my hand.

I stayed for three hours including feeding him a healthy lunch.  After lunch, I took him back to his room where his trimmer was now charged.  I take pride in keeping his beard as he liked it.  We cleaned up and I moved him back to the living room. 

I parked his chair and kissed him goodbye.  His 68th birthday is this Wednesday.  What should I buy him?  I looked at Toys R Us for things he can play with or do with his hands.....could not find the right item.  I will continue to look.  Just think, in years past I would buy him a Seamaster Watch or we would celebrate with a trip to the mountains.  As a result of FTD, he will get a card and probably not be aware that he is passing a milestone.  Will it be his last?  Only GOD knows.

So, the man that called this evening to check in says that he will fly his private plane down in a few weeks to meet Gary.  Their relationship was all over the phone and he knows he has waited too long to meet the "real Gary."  My sense is, he won't come.  People have a tendency to abandon the feeble......and that is what Gary is now.

I love him with all my he is a few years back.....

Here he is today...

Thursday, October 27, 2016

I miss him so much.

That stare.  When I walk into the Memory Care Unit to visit Gary after a long day of work, I see him looking through me.  Today, I said, "Hi Baberoon!"  He said, "Ada Mae."  No emotion, no enthusiasm.  I sat next to him and waited with him for his dinner. 

I held his hand and attempted to get him to look at me.  My mistake.  I was sitting next to him on his left.  I should know that he doesn't really relate to anything on his left.  I put my hand on his chin and asked him to look at me.  He didn't.  I asked him again and pulled on his chin.  He glanced at me and then looked toward the kitchen where the food was being delivered.  He just stares with no obvious indication of what he is thinking.

His soup came and I fed him.  He eats voraciously.  He is in such a large wheelchair that it is difficult to get him to the table.  The distance between his mouth and the table lends to leaving food on his lap.  I apologize to him and wipe his mouth.  He has no awareness that I am a sloppy feeder.

I am numb.  I am so tired that I sit there feeding him and think, "I just want to go home and lay in the bed." The angels/caregivers come by and check on the various residents.  Poor Martha fell out of her bed while I was in Virginia and fractured her arm.  Her hand is swollen to the size of a hulk-like appendage. She ate all of her dinner and assisted Marianna with pointing out her prune juice.  Even the weakest still have some ability to be aware and help others.

It is so sad.  Apparently, while I was gone, several of the residents fell and have varying injuries.  It is so sad. Why do I see it as "sad" and not "beautiful"?  Because it is unfair that these beautiful human souls are afflicted with such horrible cognitive issues.  There is no justice.

As I fed Gary his dinner of Eggplant and spaghetti, I realized that Nancy was not there.  I did notice yesterday that the Hospice Nurse was watching one of the angels  feed her as she continually pushed away the food.  My thoughts were that she is getting weaker.  Is death near?  Perhaps.  So, when she was not in the dining room, I asked about her.  I was told that she is sleeping in her room.  While my suspicions were not confirmed, I am plagued by what I will do when one of these precious souls passes.  What an impact they have made on my life. 

What will I do when it is Gary?  Some insight into that came tonight when during dessert, he started trembling.  It looks like a seizure but it is merely a full body tremor.  His eyes were scared.  All I could do was hold his arm and tell him it was okay.  As the tremor subsided, he said, "that was too good." 

I am wondering if the tremors are related to his emotions.  I will never know as he cannot answer questions.

It is devastating.  I miss him so much. 

Sunday, October 23, 2016

Anticipation of the Reunion

I am writing this on the plane on my way home from Virginia where I have been visiting my ill father in the hospital.  He is out of the Proverbial “woods” for now so I am now returning to my otherwise full life.

I am quite interested to think about what I might find when I return to my home.  I will visit Gary tomorrow.  Will he still know me?  Will he know I’ve been gone?  Will he be happy to see me?  There are so many thoughts that pester my mind.  Having a spouse with FTD (not the florist!) is certainly exhausting.  Not as exhausting as having it, I’m sure.  I honestly think that Gary has no cognitive thoughts that tell him he is severely disabled.  Or worse, it he does, he cannot verbalize them.

When I look at him know, for the most part, I see a glazed look.  Very little to no emotion.  After 31 years of marriage, it is horrifying.  I know that one day his brain will go completely away and will not return. 

I had breakfast with some family while in Virginia and I was talking freely about his condition and our assistance from Hospice.  One member who reads the blog frequently said to  my dismay, “Why does Hospice help you?”  Even though I feel I am very open about his condition and his diagnosis, somehow she had missed that he has a terminal disease and that he is going to die from it.  It is such an ever-present thought in my daily world, that I am shocked that people don’t get it.  I mean, I get that its not their reality…..but what do people really think about any form of Dementia.  I am painfully aware that unless you have watched a loved one go through the decline that it is hard to fathom it……


Right now, I’m exhausted from a week of sitting in the hospital room and having varied sleep patterns.  I have been a two planes for way too long today and have one more leg to go after a stop over in Las Vegas.  I am tired……and I won’t really get rest tomorrow. 

This coming week is very important in the life of our University.  I have to be one my game.  I will rest next weekend.

 I will see Gary tomorrow.  I can’t wait.  I love him so.

I'll make it easy on you and just finish the story.  I spent 18 hours getting home to Anaheim from Virginia to Atlanta to Las Vegas to LAX to was exhausting.
This morning I awoke early and went to church.  After, I went to visit Gary and he greeted me with a blank stare and a very welcoming kiss.  Actually, three.  He knew me.

One of the angels said that he had been asking about me.  She said that several nights in a row that when they put him to bed, they stand him up and show him our pictures on the wall. They tell him I'm his wife and he repeats "My wife."
He also started getting tremors in his extremities again. The Hospice Doctor will come this week.
We spent several hours together and I was just too tired to stay.  I had a lot to do so I left. 


Tuesday, October 18, 2016

Trip through Rage into Virginia

What a difference a week can make in the lives of humans.

As many of you know, my husband has FTD (Frontotemporal Degeneration) and has lived in Memory Care for four and half months.  He is now wheelchair bound due to many falls and risk of falls in the future.  He is practically non-verbal. 

Prior to him moving into Memory Care, for a couple of years, he went to day care for half day and we hired caregivers to be at home with him until I got home at night.  Just last December , I took him on an airplane from our home in Anaheim, California to visit my Dad and family in Virginia. 

That trip was exhausting for us both.  Even then, I had to use a wheelchair and an attendant to catch planes on time.  I knew when he locked me out of the rental car at the airport in 20 degree weather that we would never travel together again. 

My husband is 67.  On the other hand, my father is 84 and up until 5 weeks ago, somewhat healthy.  Then the call came that he was in the emergency room with liquid coming from every orifice and in critical condition.  With the whole story revealed, it had Pancreatitis, kidney disease, heart failure, atrial defibrillation, diabetes, and a chronic case of stubbornness.  As he moved in and out of the critical care unit and skilled nursing, the stories from home were confusing.

Last Friday, I received a concerned call that forced me to make the decision to go to Virginia.  At was an awful time to have to leave events at my job, but if everything goes well, I could return to work in time for a once-in-five year meeting at work. 

So, here I am in Virginia on day two of my "I'm here to be with my Dad tour."  He has again been upgraded to the skilled nursing floor with only oxygen and a feeding tube to his stomach.  Their is no medical reason for him to not want food so we can only surmise that his repulsion to food is psychological. 

There is a very big difference in caring from someone with FTD and someone whose mind is completely crisp.  My Dad does not miss anything and my husband comprehends very little.

As I have rubbed my Dad's legs and feet with lotion, removed and brushed his false teeth, fed and watered him, I found that compared to before Gary's illness, I have expert level patience.  Dad is so much easier to care for than Gary simply because he can communicate with me and still has humor. Nothing seems gross or bothers me as it would have pre-FTD.  Caregiving makes one tougher.

I found that memories can trigger rage. Last December, when we arrived at the airport, I put Gary into the wheelchair and moved to luggage. I put one suitcase on Gary's lap and pulled two behind me while pushing his chair with my waist. We moved across the entire aiport to the car rental counter.

There was one Little girl sitting there looking at her smart phone and picking her nails.  She said that she could not help us as she was off-duty and that I had to go outside, up the elevator to the parking deck.  I was flabbergasted.  So, I went through the same process and managed to get Gary and the luggage to the parking deck.   I was ready to cry.  It was 20 degrees outside and I asked the attendant to stay with Gary while I retrieved the car.

As soon as we got the luggage in the car, I realized I had to take the smart carte back.....nope, I could not pay the attendant to do it.  I made sure the heat was on so Gary would be warm.  I had to trust that he would not get behind the wheel and drive off.  When I returned, he had locked the car with himself inside and would not let me can go back and read my blog from last Christmas for the rest of that story.

That night, as we left the airport in the rental car, I realized that one of Gary's gloves was missing.  Brand new.  I became irate to the point of screaming.  I knew he couldn't help it .  I pulled over in a gas station parking lot where there was plenty of light and found the glove.  I could not find various mechanisms on the car and was frustrated beyond imagination.  I remember cussing like a sailor because during this time, I turned the wrong way on the highway and was headed for Virginia Beach. I turned to the other direction.

As we drove up to the mountains, I cooled off.  But I remember feeling rage at being helpless. 

Fast forward 10 months.  Same airport.  By myself.  I had left home in California at 8:00 am Pacific Time.  I arrived in Virginia at 11:35 pm, Eastern time.  I was tired and looking forward to getting my rental car (that I was supposed to pick up at 10:30 pm) and going to the hotel.

My bag was literally the last bag down the luggage carrier.  I retrieve my brand new, very large suitcase and started to walk to the same counter as last December.  I thought that the bag had an incredible amount of drag and the 42 pound bag felt like 60.  The wheel had broken.  Silly me, rather than get a smart carte, I drug it.  The counter was only about 100 feet. 

Yes, unbelievably the counter was closed with a large sign saying to either use the kiosks (conveniently located next to the sign) or go to the large yellow Hertz sign in the parking deck.  Both kiosks were out of order.  "You have GOT to be kidding me!"  So, I walked outside, dragging my suitcase as for now there were no carts available.  I drug it onto the elevator that we had used last Christmas.  Memories of that trauma were flooding me.  As I exited the elevator, I rested and looked for the yellow Hertz sign.  None to be found. 

With my frustration growing, I approached the Enterprise booth.  The child working the booth was clearly related to the chick who was off-duty last Christmas.  It was a very shallow gene pool.

When I asked about the Hertz booth, he looked at me and said, "Ma-um, that counter is downstairs."  I explained about the closed counter, the out of order kiosks and was met with the Service Etiquette of a dead rock.  He finished with "that's not my company and I don't know what to tell you" as he closed the glass service window.  ARGHHHHHHHHHH. 

There was another passenger having the same problem.  We both went back downstairs ( same elevator, no cart....dragging sixty pounds)and asked  security guard what we should do.  He replied that we should go out to the FIRST floor of the parking deck to the other Hertz counter.  Really?????????

I drug the suitcase back to the downstairs doors and proceeded to the bright yellow Hertz sign that was tucked around behind the elevator where I had been twice.  I retrieved my car and asked for directions to the hotel.  THe directions sounded easy enough.  "The hotel is right on the property, in fact, you could walk there.  Just go out the garage, hang a right and go out of the airport.  Make a U turn at the first left and you will come back around to the hotel.  Its a five story building and you can't miss it."

It sounded easy enough.  I left the garage, turned right and went out the "airport" and never saw a left turn until I got to the intersection at the traffic light about a mile away.  Perhaps she meant "left Turn"? So I turned left and went to the area where the other hotels were.  My hotel was not there.  So, I decided to pull over and call the hotel.  I found the same gas station as last December which had plenty of light.  I called the hotel.  I'm sure I was sounding extremely frustrated when I told the woman where I was and asked for clearer directions. 

She said, " Go back to the terminal.  Go past the Rental Car Garage and go out of the airport.  Make a U turn at the first left and you will come back around to the hotel.  Its a five story building and you can't miss it."

I told her that I had just done that.  She said, "I'm sorry huney, just do what I told you and you will be here in no ti-me. "  I was enraged and starting to cuss. 

So, I went back to the airport building and followed the exact same directions.  I did see a left loop that went back to the departure terminals but did not take it.  I told myself that they had told me to exit the airport.  I ended up in the exact same place.  

I pulled over and screamed.  I had to re-group.  I tried to think like an airport and hotel employee.  OMG.  It came to me.  They did not mean go out of Airport, they meant go out of the airport building!  Unbelievable. 

I returned to the building, turned left on that Departure loop road and saw the hotel on the right.  I did have to make a right turn to get there.  I was so angry.

I got to the front desk and encountered the woman on the phone that insisted on calling everyone "Huney and Darlin". I explained to her what happened. She looked at me with a blank stare and said, "well, of course I meant the building. Why would you go all the way out the airport?"

I gave up and spent the next hour calming down in my room.

I as I lay in the bed, I contemplated the residual anger that came up in me related to events with Gary 10 months ago.  The emotions were the same in each situation. So many things would not have been so frustrating had I not been so tired and dealing with old "baggage".  (Pun intended).  I need to learn to purge the emotions better so little things do not get to me. 

I am sitting in my Dad's room watching him sleep.  He needs to eat but won't.  I will be here for four more days and I have a great job to do. Gary is cared for in California and I need to stay on track here. I grieve everyday for the husband who has mentally left me.  I am concerned about my Dad but he seems to be taking the path less traveled out of the woods.   

Emotions are an amazing thing. NO matter what the emotion one is feeling, whether anger or love, it can encompass all of one's being.  God is an amazing God that enables us to feel so richly. 

Note to self:  pack a lighter suitcase next time.

Saturday, October 15, 2016

Lives fulfilled

Its been a few days since I went to see Gary.  I had Bible study and appointments on Wednesday.  On Thursday, I worked late due to needing to catch up at Work.  On Friday, I met an old friend for Dinner.  On Friday night, I decided to go to Virginia because my Dad is in rough shape.  Pancreatic inflammation and Conjestive Heart Failure.  I spent a lot of the evening planning my trip and trying to find a good flight.

This morning, Saturday, I headed for Gary's place as soon as Heather, Xander and I finished breakfast. When I got there, he was sitting in the chair sleeping.  All the residents were sleeping.
I thought of waking him, but he was so comfortable despite the slump. I held his hand and he grasped my hand with the familiarness of a 31 year marriage.  He knew my hand without ever opening his eyes.  I whispered to him that I have been busy and that I was sorry for not visiting him.  No reaction.

I also told him that I would be leaving to visit my Dad in Virginia.  I said "Do you remember my Daddy, Wallace?"  He whispered, "Wallace."  I told him that I thought my dad is dying and that I have to go. He made no sound but squeezed my hand harder.  I have no doubt that he knew what I said and comprehended the depth.

I sat with him until he opened his eyes right before the food was served.  I think he smelled the barbeque chicken. I gave him water and a straw.  He drank the water and juice down in several gulps.  Some things never change.

As I fed him lunch, I was starting to get antsy because I had so much to do to get ready for my trip.  Laundry, packing and Medicine prep.  As soon as he was done eating, I wheeled him into his room and trimmed his beard and moustache. At one point, I leaned over him and attempted to cut his nose hairs.  He slipped his hand up my skirt.  I thought, "Who are you, Donald Trump?"  I stopped him and then realized that he really did know me.  Ironically, I was reminiscent of 31 years together.   I finished his trimming and wheeled him out to the living room.  I gave him a new copy of "National Geographic". I snapped this picture before I left.

I firmly believe that he will not know when I return after a week that I have been gone.  He is safe and well-cared for at "The Happy Place".  I am grateful.

When I think of God's purpose, I am mesmerized by his plan.  I know not what it is but am positive that it is masterful and both Gary and I are pieces of the plan.

Thank you Lord for the full lives of my father, Wallace Arnold and my husband, Gary Gerard.

Monday, October 10, 2016

I am turmoiled....

It was a gloriously successful day at my job.  There are lots of reasons but for the most part, our students are happy as proved by our recent Student Satisfaction Survey.  I have been in Anaheim for 14 months and the results of this survey show that our team is making a difference. 

Pre-FTD (Fronto temporal Degeneration) I would have called Gary immediately upon receiving the fantastic news and shared with him.  My reaction today was to pick up the phone and then I realized, I can't call him much less have him understand what I was saying.  So, I shared the results with my team and felt good.  However, the gap of not having Gary to share my wins with really hurts. I am grateful for how good God has been to both me and Gary.

After work, I headed to the Chiropractor and then off to see Gary.  I got there right after his soup and took over feeding him his main course.  He ate voraciously and drank two glasses of juice and one of water.  I know this will create work for the angels later in diaper changes, but he has not been having good bowel movements and I'm sure it is due to lack of water.  (Who would have ever thought that I would be writing a blog about "poop"?)

After dinner, I removed his bib and started talking to him.  I told him about my results of the day and the increase Student Satisfaction Survey Results.  In the old days, he would have congratulated me and asked what I was going to do to improve them next time. He always pushed me to better excellence.....but, today he looked at his dinner napkin and put it in his mouth.  No response.  No praise. 

As I sat there feeling sorry for myself, I realized that he has been reduced to a man sucking on his dinner napkin.  Who am I to feel sorry for myself?  How obnoxious of me.  I thought about Gary being a child of God and knowing that he is so loved.  I still don't understand the "why" of this horrible disease. 

I thought of Gary when we used to do great things together.  Like when we went to Haiti in 2010 after the Earthquake.  Those thoughts are so real since Hurricane Matthew just plowed through Haiti, killing hundreds.  If Gary knew, he would be so sorrowful.  Here is a picture of him helping to build a house in Haiti.

 gary in white shirt with the tan hat....

I was contemplating leaving for the night when my phone rang.  It was a work call and I answered while sitting next to Gary by saying, "Hello, this is Ada."  Gary instantly said, "Ada Potata.  Ada Potata."  He knew I was there.  I took the call in another room and then went back to him. 

One of the angels had moved him next to the sofa so I sat down on the sofa and held his hand.  He picked it up and kissed the back of my hand.  Those moments are so very precious. 

Just yesterday, I was also there when we were sitting quietly and he reached over and held my hand.  No words, but the love was flowing.

The times at "The Happy Place" are always full of stories.  All the residents have their own personal story.  Like Marietta.  I sat with her yesterday at lunch and she is obviously enamored with Gary. She is over 80 and always tells me how attractive he is.  She asks if he is my father and I explain that he is my husband.  She tells me that she is sorry for me.  I try to engage her in conversation after she talks about her deceased husband.  I asked if she has children and she says "Yes, I do."  When I asked how many, she said "Two, I think."  She could not tell me how many children she has nor whether they are male or female.  How horribly sad.  She said, " You know, I just don't remember things very well anymore."  I told her that it was okay and that we should just enjoy the coconut cake on her plate.  She said that she would like

Tonight, when I left the unit, I proceeded to the parking garage.  There was no one there.  I have no reason to be afraid.  However, I heard a different alarm near the back of the garage and was concerned about it.  I walked to the back near the electrical room to see if perhaps it was an electrical alarm or perhaps a system alarm.  I also manage a multi-million dollar building at work and am concerned about such things. 

I quickly realized the alarm was merely the back service door that someone had entered or exited without the use of a code.  The more shaking revelation was the white, unmarked van that was parked next to the service elevator.  Next to it was a gurney, flag-draped.  I instantly realized that someone at the facility had died.  A Veteran.   How horrible.  Obviously, they take bodies out the back door.  Good practice so as not to upset the residents.

What a sobering thought.  These people that I have come to love will all die.  Gary will die.  We all do.  So, what is it that we can do? The only answer is to make sure we are right with the Lord so we are ready when the time comes. 

I hope that all these wonderful people that I have come to love know this fact and that they are ready for Heaven.  If not, how do we get the point across when their brains have left us?  Does God have a provision for those who can't know him and accept him?  I am turmoiled.....

Saturday, October 8, 2016

Does he know me now?

I have regrouped after Gary did not know me a few days ago.  The day after this all happened, I had a sore throat and did not go to visit.  I took the night off.

Yesterday, after work, I stopped by right at dinner time.  He was being fed by one of the angels, so I took over.  He seemed to know me.  In talking with the Care Manager, she reflected that in her experience, he should always know me but maybe won't know that I am his wife.  She feels that the residents there do recognize familiarity.

I spent a short amount of time and went home to recover from the week. 

Saturday dawned with some important bookwork to do.  I got the laundry done and finished the paperwork.  The house still feels very lonely to me without Gary here.  It is a miserable moment when I start to say something to him and he is not there.  It is a more miserable moment when I roll over in our bed and reach for him and there is no one there. 

Around his lunchtime, I headed to the Happy Place.  He seemed quiet today in that he was eating, kissed me hello and had no tremors.  I said hello to all the residents and helped a few move around, retrieve walkers and answer questions.  All were going to the bathroom or getting diapers changed to get ready for the Bluegrass concert occurring in the main recreation room.

The angels took special care to make sure Gary got a good seat up front.  They let me sit beside him and I sorta feel bad because I am taking a seat but that reassure me it is okay.  We watched "the band" warm up.  All the band members except for one were senior citizens.  Banjos, guitars, dobro, mandolin, fiddle and bass.  It was akin to going to one of my family reunions back in Virginia (mama's side) where everyone brought their instruments to play bluegrass, country and gospel. I used to overhear conversations inviting family where the closing to the conversation was "Don't forget to bring your music."  That actually meant for them to bring their instruments.

The band was good. I knew all the words to all the songs.  Gary sat and stared off into the wall for most of the concert, but tapped his foot along to all the beats. When it came to some of the gospel songs, he mouthed the words.  Taking him to the concert was a good idea. 

His state now is more quiet and removed than anything else.  If he has any original thought, it is never expressed.  He is quiet and more aware of noise or conversations going on in the room than of the person to whom he is talking.

I left shortly after the concert and went to the gym.  I had a bad headache but decided to try and walk off the pain.  I noticed the parking lot at the gym was near empty and when I entered, the attendant indicated that I was all alone in the gym due to the local parade.  It was strange being there all alone.  As I walked on the treadmill, I thought of Gary being confined to the wheelchair.  I remembered watching him last night in his bathroom, after he asked to go to the bathroom, standing up with a vice grip on the safety rails and immobile.  He brain could not hear the directions being given him.  He sat on the toilet for near 20 minutes and never went.  Everyone was frustrated.

As I walked, I tried to walk off the anger, frustration and grief.  Its hard to do that in just a half hour.  I felt like crap and decided to leave.  When I drove past the "Happy Place" on my way home, for a moment I considered stopping and feeding Gary dinner.  I kept driving.  I just didn't have it in me to go back today.

Wednesday, October 5, 2016

Do you know who I am?

I had a great day at work.  After 13 months on the new job, it is all coming together.  God could not have landed me in a better place.  Last year when I thought I was at my professional lowest point, I had no idea what God had in store for me.

Today, I left work a little later than normal and traffic was much heavier.  I missed visiting Gary last night due to a personal appointment so it was important to me to get there this evening.  I never want him to think he has been abandoned.  Dinner and dessert were over when I got there.

As I walked in, Annie the dog practically knocked me over wanting to be picked up.  I did and talked to her right behind Gary's wheelchair. I stopped for a moment and thought that he might overhear me talking to the dog and feel bad that I did not talk to him first.  I popped my head around the chair and said my usual, "Hey baberoon!" 

He looked at me in a funny way as I kissed him and said hello again.  Tonight was different.  He did not really respond and I noticed that he was holding a warranty card from a product and a label with his name on it.  Upon further investigation, I found a massage ball in his lap.  He did not seem to be aware of the mechanism, only the label.  I spoke to several of the angels and Lucia said that it came from the hospice nurse.  Apparently, she brought it for him to hold during times of stress.

I moved Gary to the other room so we could be alone and not distracted.  I parked him and got in a position where he could clearly see my face if he chose to do so.  I talked to him quietly and he responded as he does to the caregiver/angels.  I held my breath as I asked, "Gary, do you know who I am?"  He looked longingly at me and said, "No."  "Are you sure you don't know me?"  "Yes."

I released the breath and tried a different statement.  "I am Ada Mae Gerard, your wife." 
"My wife."  No question mark.  It was a statement.  I held out hope.
"Gary, do you know my name?"  "No."

I sat there and looked at him while he was trying to pull the label off his massage ball.  I decided to leave. I rolled him back into the main living room and asked Lucia where she wanted him.  When she let me out of the unit I told her what happened.  She gave me a comforting hug.  THis is a woman who lost a son a few years ago.  She understands. 

We both decided that sometimes life sucks.  I told her I was going to the gym and she smiled and said, "Sweat it out and go get some sleep."

I went to the gym for a numb workout....very quick.  I really wanted to get drunk.  I refrained.

Now at home, I received a call from an old friend who comforted me without knowing it, as he diverted my attention away from the subject. 

Tomorrow, I will get up and start anew.  I knew this day would come and had been bracing for it.  Surprisingly, after my breakdown on Sunday, today was not so hurtful.  I have returned to the numb state of a wife who protects herself from the horrible disease of FTD.  Only God knows what tomorrow will bring.

Sunday, October 2, 2016

Our 12 year old Beagle Visits Daddy in Memory Care

12 years ago, Gary and I made a decision to adopt a puppy.  Well, the decision was kind of made for us by one of my well-meaning Employees who had a litter of beagles.  One look at this baby girl dog and we were hooked.  From the beginning she had a very big voice so being southern by birth, we named her Diva Gerl. 

I know the truth, even though she loves me, she was always Gary's dog or "Daddy's Girl" as he referred to her.  For years, they were best buddies.  He used to drive a BMW convertible  and in the summer she donned "doggles" and a sun hat so as to not be over exposed.  They were best friends.

They have hiked hundreds of miles together and whenever he would go on a business trip and come home, she would crawl between his legs, go belly-up and cry like a baby.  Her daddy.

I was very concerned when I knew he was going into memory care because I did not know how she would mourn.  He checked into "The Happy Place" on June 30.  Here is a picture of them on his last morning in our home.

 The following week, Diva had surgery and spent several weeks recuperating at home with a cone of shame.  She was distracted and did not seem to have any bad repercussions from his absence.  Several times she has walked around the house whining and once got on the bed and sniffed. 

I've talked to him about Diva Gerl and he always smiled and replied, "Diva Gerl".  I have thought often about taking her to visit but was not sure who it would be harder on, her or him.  As it turns out, it was harder on me.

Today as I was leaving home to go visit Gary, Diva Gerl looked at me in a longing way that I interpreted as "Take me with you."  So, I did.

As we arrived at "The Happy Place", Annie, the resident dog, greeted us and began sniffing and jumping over Diva.  Diva reacted positively and acted like she wanted to play.

I took Diva to Gary's wheelchair and said, "Diva, here is Daddy!"  She was so distracted by the dog that she had no reaction to him.  Gary did not seem to react to her either.  So, I took them in his room without Annie and closed the door.  I rolled him next to his bed and Diva seemed to recognize the bedding and jumped on his bed.  Then, it clicked for her.  She got excited and tried to get on his lap.  She whined and cried. 

I kept telling him that Diva had come to visit him and that she wanted him to touch her.  Her reaction was so sad because he was not responding.  He kept saying "Touch the Gerl" in response to my prompting.  She licked his hand and he just sat there.  He started saying "I'm sorry.  I'm sorry.  I'm sorry."  He gave no response when asked "Why?"

I couldn't take it and knew that for me, I had made a mistake.  For the 92 days that Gary has been there, I have not cried out of melancholy or sadness.  Those days of suppression hit me like a brick wall.  I felt an incredible sadness in my heart and knew I had to get myself and Diva out of there.

I took Gary out to the living area and secured his chair.  The angels (caregivers) were all taking a break at the dining table and looked at me.  I started to lose it as one of the angels got up to let me out.  By the time she entered the code on the security door, I was sobbing in her arms.  I felt so awkward.  I couldn't control the tears.  The reality that my husband doesn't know his own dog was way worse than any torment we've had so far.  I felt like a knife had gone through my body.

She held me and said, "I don't know how you do this."  I thought that today, I am not doing it very well.

I escaped from the unit and went to my car.  Diva climbed in the back and slipped out on the pavement.  Yes, she too is aging.  That realism also hurt.  I broke down in the car as I drove away toward home.  The sound coming from me must have been guttural as Diva whined. 

I realized that I was out of control and snapped myself back into shape.  I had fooled myself and bragged to others that like the Pink Floyd song, "I have become comfortably numb."  Comfortably numb, my foot.  I am a wretched, mournful, pissed off victim of FTD.  I hate the disease.  I hate it for Gary and I don't understand God's plan.

I took Diva home and then returned to the "Happy Place".  The residents were listening to the soundtrack from "Grease".  Talk about a lively environment.  They had lunch and then started scattering to different parts of the unit. 

I took Gary to an anteroom and spent some quiet time with him.  There was a newspaper in the room so I started reading to him.  He followed along and repeated many of my words.  At one point he said, "There has to be some profit in that!"  I laughed.  He smiled. 

Shortly thereafter, we could hear real singing coming from the living room.  One of the angels was performing songs from "Grease" along with the soundtrack. She was fabulous, animated and put on quite the show.  The Residents were laughing.  I took Gary and another resident to the room and enjoyed the show. 

The laughter and enjoyment of those moments were the exact opposite of the grief I had felt earlier in the day.  Same room.  The roller coaster of emotions of today have taken their toll on me. 

Gary started to nod off so one of the Angels took him off to take a nap and once again, I left.  This time was finding me closer to the comfortably numb side of emotions rather then the gut-wrenching sadness of earlier.  God has a way of snapping me back into reality and dusting me off.

As I left the unit, I ran into the Pastor who had touched our lives so much last week.  I gave him our blog business card and asked him to share it with others and to pray for us regarding the book I will start to write soon.

One thing is for sure, during this week of FTD awareness, I did not need a reminder that FTD has changed my life in significant ways and permanently.  I pray for all the families who are touched by this horrible disease.