A morning of banter.

Here is an attempt at sharing the transcript from Gary's banter in bed from around 1:30am to 8:00am this morning.

"I have to pee."

"Okay, I will help you up.  Wait until I get around the bed. Okay, now, stand up.(I have to pull him to a seated position and manage to turn his feet to the floor for standing).  Gary, your legs are shaking like crazy.  How does that feel?"

"Really bad."  As the shaking subsides and his need to pee increases, we move to the toilet room.

"Gary, stand really close to the toilet.  Straddle it so you pee IN the toilet."

"Pee in the toilet.  Pee  in the toilet. Pee in the toilet.  Pee ON the toilet."

"No, stand still and finish peeing....are you done?"

"Yes, I am done.  I am done. I am done."

"Okay, turn around (with guidance) and lets wash your hands. Here, use this soap.  No, not on the toothbrush...on your hands. Okay, now let's dry your hands."

"Dry my hands.  Dry my hands. Dry my hands." 

"Yes, now lets go back to bed.  Sit down right here.  Swing your legs around.  (He is now lying crooked in the bed and I have to move his upper body over to the pillow so there is room for me.) Yes, I will cover you.  Okay, now lets go to sleep."

"Go to sleep.  Go to sleep.  There is a mole on my chest.  Go to sleep."

"Gary, stop picking at your mole.  Here, lets put your hands on the outside of the covers.  Now, go to sleep.....gary what are you doing?  Leave your pajamas alone.  ( a few minutes later) Gary, what are you doing?  Stop putting knots in your pajamas.  Go to sleep.  Here is Diva, rub her head instead. "

As the dog settles down and Gary is distracted by rubbing her ears, I manage to go back to sleep. 

This turn of events including helping him in and out of bed occurred 4 times throughout the night, once without him even peeing.  With the help of Nutritional Supplements, I have learned to go back to sleep each time except for early in the morning.  Then, I just need to get up.  Since this was Saturday and we had the luxury of sleeping in, I tried.

Around 6:30, after a round of the process outlined above, we went back to bed.  I held his hand and tried to return to slumber.

"Honey, where is Heather?"  I was shocked that he realized she was gone from the house for the weekend.  I explained and he seemed content.

Then, he started the following with no interaction from me.
"Alexander is my grandson.  Heather is my daughter.  Ada Mae is my wife.You just don't understand.  Turn the lights on.  Turn the lights off.  I do not have to pee.  Blue water.  Blue water. Blue water.  Diva is a special girl.  A Very special girl.  ...Ada Mae.  Ada Mae.  It could rain.  It could not rain.  Don't pee in the floor.  I can't tell.  I'm confused. 
I really have to pee."  At that phrasing, I arose and started to go through the get-him-up ritual.  As we neared the toilet, he couldn't wait anymore and peed on the floor and the rug leading to the toilet. I rushed him as fast as I could to the toilet to finish.  


I got very angry and started to yell at him and realized there was no point.  It would not change anything for now or the future and it really would not make me feel any better.  So, we cleaned him up.  Mopped the floor and put him back in the bed to watch television while I went downstairs to make coffee and tend to the dog.  Another day in the life.


Today, I donated his drum set to our church.  There was something therapeutic about tearing it down and putting it in the garage for pick up.  It is one less reminder sitting around of the man he once was.  At least, they can use it for worship and I'm sure that has some relevance to God.  He will like hearing Gary's drums played in praise.

Final Diagnosis from Neurologist.....

Lets do a little test.  Get a second hand watch and prepare to time how many times in a minute you can tap your heel onto the ground.  Go as fast as you can for 15 seconds.

Now, multiply times 4.  What you have just done is duplicate what Gary does a majority of any day.  Just a few minutes ago, I timed him at 212 taps per minute.  It is an uncontrollable reaction to his brain sending signals to his leg.

A few minutes ago, I assisted him to a standing position from as seated one and watched his leg shake uncontrollably for a few minutes.  The brain sends signals that the body answers.....it would be miserable for those who are aware of this.....I don't think for a moment that Gary even realizes this is happening.

I received a call from Gary's UCI Neurologist today.  He confirmed after reviewing the MRIs (recent and two years ago) and EEGs and Ct Scans that indeed Gary's brain has shrunk at an " Impressive" rate.  Before, "impressive" always meant something good, but today the word has fatal qualities.

He basically said that the FrontoTemporal Dementia is expected to continue to shrink Gary's brain. Currently, the right frontal brain is shrinking at a significant rate.  This is the part of the brain that controls emotion and executive function. He anticipates that within 1 year, he will need full time nursing care either at home or at a facility.  The weird part is that he complimented me for the care he is currently receiving and inquired if I could continue.  I've never felt good about a compliment regarding dementia care....

I asked the Doctor about long term prognosis and he indicated that Dementia does not kill a patient.  He was very forthcoming to say that Gary will become vulnerable to every conceivable issue...falling, choking, not swallowing, heart attacks, strokes, etc.  Basically, the brain will no longer protect him.  Wow.  Wow. Wow. 

Upon further questioning the doctor said, "if he stops eating or swallowing, you need to call Hospice."  Hospice.  That means death.  I knew that already.

While the diagnosis is not that he will die within one year, it is that life will take on significant changes during that time.  I have four appointments next week to tour Memory Care Facilities.  It is not too early to start investigating options.  I have always said that I will keep him home as long as I can afford it and as long as he knows me......so far, so good.

There is a special guilt that exists in the spouse.....How do I know in the future that he knows me?  What if he 99% of the time does not know me and I put him in protective custody of a care facility and the one percent occurs and he awakes in the middle of the night and wonders why I left him.  Stake through the heart.

On the other hand, I am 53 and need to protect myself and my own health.....is that an excuse not to take care of myself?  I think not. I need to make sure I am healthy and productive to continue paying for all this.

I need to make decisions as they come and ensure that God is in every decision.  Why is it that during these times the human naturally tries to take over and make all the decisions?  God is in Control, Ada.  God is in control.

What about the wedding vows?  I am still loving and obeying.  I remember now....I said "when we are separated only by death..."  What did that really mean?

So, I am spiraling right now.  In two weeks, I am leaving Gary at home for 4 days, 24 hours per day and going to the beach.  I need to do this for my sanity and to dry run being apart.  Pray for me.  Pray for him.  Pray for his caregivers.

Pray for his daughter and son. I am going to go into a closet and cry now.   Oh, that's right.  I can't.  Gary is on the toilet and I need to make sure he is clean and gets safely to bed.  Dementia is hell for everyone it touches.

Thanks to my sister in law Cheryl for being there as an extension of my sanity.  Her love and experience is worth more than she will ever know. 

We are Still Soul Mates

Since I brought Gary home from the hospital he has acted completely normal for him. The difference has been in me.
It could be said that I have been more patient, tolerant of frustrating behavior and less concerned about bodily fluid accidents. 

Even though the scare was short lived, it made me realize how precious he is to me.  He is still my soul mate.  The soul's heart is intact despite the brain being dysfunctional.
He still has a sense of humor.  For example, this morning when dropping him off at daycare, his normal attendant came out to get him from the car and said his normal "Hey Gary....yeah, yeah, yeah.....lets Rock and Roll." I asked Gary if he knew Luis' name.  Gary looked at him for a few moments and as I whispered "Luis" into Gary's ear, he said boldly "Rumpelstiltsken!"  We all had a laugh and then Gary repeated after me and said "Good morning, Luis." I don't always have a chuckle under my breath when I leave him but I did today.

I have a compact disc in the car of a live concert of "John Denver".  One of the songs is a compilation of "Leaving on a jet plane and Good bye again."  They have always been songs that bring a tear to the eyes but more-so today.  They are songs about leaving someone you love to go and do the work you  do.  John sang it with a lonesome, soulful pain that I can so relate to everyday. Love is a beautiful thing.  It is probably the most beautiful emotion I know.  It feels so good and it hurts so bad.

As Gary and I filter through the daily crap dealt by Dementia, it appears that he still knows me well and remembers little nothings that we have shared over the years.  When he was in the hospital, I told him that I love him,  He grinned and prompted me by saying "how much?"
I answered with our common response, "I love you more than you know from the top of your head to the bottom of your toes and everywhere in between.  Do you know what I mean? "  He mouthed along as I said the words. It was a priceless moment.

So, my message to those reading this is:  if you love someone, live each moment with them as if it is your last.  Whether it is through Dementia, death or something else, it can be gone in the blink of any eye.  And for those who know and love me well, I ask a favor.  On days or moments when the frustration of dealing with the disease gets overwhelming....remind me of my own words written here.  After all, I am human.

"Events of Weakness"

event

I am sitting in the hospital room with Gary watching him fidget while waiting to be discharged after a day and a half of observation.  He has no concept that he is being sent home but he is fidgety none-the-less. 

His medical tests all show negative for seizures and his brain apparently does not show the propensity for them either. The doctor is calling it "an event of weakness". So, we take him home and watch him……. Sounds exciting for both of us.

The first step is to toss out his electric toothbrush.  No one knows the connection between the “events” and the electric toothbrush.  For those who know not of the story,   yesterday morning while brushing his teeth, Gary had what appeared to be two very short, intense seizures.  So, we spent the day in the emergency room and then checked him in for observation. 

Something about having a loved one in the hospital does things to the other loved one’s psyche. It conjures thoughts of “what ifs”, it reinforces loneliness and forces the thoughts of “how is this going to end someday?” It even changes how the dog acts.  It changes how everyone acts toward you.  Very strange is this concept of people caring about you but not knowing what to say.

I know for sure that Gary will die someday.  We all do.  The bigger question is what will happen between now and then?  How many trips will there be in the ambulance?  How many times to the ER? How many hospital stays?  The control freak in me yearns to prepare for  all what ifs so life will be easier during those times…..kinda like a fire drill, dry run or a dress rehearsal.  One of my co-workers always tells me to relax and only deal with the here and now.  Is she right?  Possibly.  I sometimes don’t know what to think about if I am not planning, visioning or strategizing.  Meditation seems like a lost art.  I know the art so well but lately have chosen not to enjoy the art….somewhat wasteful of precious time .

I was off work yesterday with Gary but went to work today.  It was so great as I knew Gary was taken care of medically and I could do nothing but wait.  I was so productive it was crazy.  I need the focus of work. 

When I talk to God, I often ask “why”.  Answers do not come.  People tell me that I am strong.  Horse hockey.  I am not strong personally.  I am saved by grace not deeds.

Behavioral Variant Frontotemporal Dementia

Behavioral Variant Frontotemporal Dementia.  Well, there it is....the diagnosis.

Sounds dramatic and horrible.  The truth is Gary is no different than he was before the diagnosis we received on Thursday but now it has a more specific name.  The Neurologist will be further examining his MRI and CT scans to determine if Gary's brain has shrunk.  If so, there is nothing to do but live like we do now.  If it has not shrunk, perhaps his symptoms can be managed with medication and psychiatric treatment. I know my husband pretty well and unfortunately, I'm betting on the brain shrinkage. 

Am I scared?  Not really.  I've had time to adjust so far and know that someday I will be alone. Even though I spend most moments outside of work with Gary, I am still very much alone anyway. 

I decided last week that I would take the day of Memorial day to myself and get a sitter for Gary.  I also asked the agency to send someone over next Sunday so I can go to church and do whatever I decide I want to do.  The hard part is....it has been so long since I've done anything that I do not know what to do.  That must sound silly, but I am still dealing with what I call "dementia guilt".  I feel bad that Gary can't do whatever I do and I feel guilty about it. Yes, I will grow out of that as well. 

Emotionally, I am very fragile but accepting the inevitable.  Dementia is a horrible, cruel disease.  Things will get worse before they improve. I know this.  I hate this.

An evening in the E.R.....again.

Since moving to Anaheim, Gary has fallen over backwards twice from the dining table.  We have a bar height table that has chairs with very long legs that sit on carpet.  Both times, I think he was trying to get up from the table by scooting the chair backward which will NEVER work.  Both times he fell backward and struck a sliding glass door.  So, stop with the judgment on why he was sitting at the table by himself.  I deal with enough guilt without hearing from the readers.  Sometimes, a girl just has to pee.

This last event happened on Sunday afternoon.  Heather and I heard him fall and retrieved him from the chair for a thorough inspection.  He seemed fine.  No more thoughts were encountered regarding his possible injury until I got home from work Monday evening to find a stern caretaker telling me that at day care he fell asleep multiple times.  I found out later that he actually fell asleep during exercise hour!  His "handler" at the CLUB was concerned and told Jessica when she picked him up from Day Care.  She noticed that he fell asleep in the car.  These are not normal occurrences.  So, we ate a quick food bar and went off to the hospital for a check up.

After a long day's work full of mental strain, it is uncomfortable to sit in an Emergency Room and watch your husband watch television and act completely normal while one waits on the test results.  In my heart I knew that he had just been sleepy but the strain and pressure of "what people think or say" is tough.  What if there was something wrong and I did not take him in?  So, I went anyway.  After being released, we stopped for a take-home hamburger and went home.  He was fine......no medical issues except for his normal dementia symptoms.  Thank you, Lord for the help.

Heather suggested that I serve him at a t.v. tray in the living room.  I tried that Sunday evening.....it worked just fine.  So, much for the $3000 dining table imported from the Orient.  It seems as if all the material things we worked for in our lives are slowly becoming less important.  For Christians, it should be that way anyway.  Right?

Gary went back to day care today and I went back to work.  There is no day anymore that can be classed as "just another normal day".   There is no crystal ball that tells me today is the day that Gary forgets how to put on his pants or he needs to be fed all the time.  What will he remember tomorrow?  What will he forget or lose tomorrow?

Everyday is a new adventure.  I wish these adventures on no one.

"Yes, I will feed you pie."

Years ago, Gary and I went to the theatre to see the movie "Driving Ms. Daisy".  It was a lovely film about a rich old woman in the old South who employed an older man to drive her.  They became great friends and after many years, as they aged, one day he assisted her by feeding her pie.  I distinctly remember the conversation Gary and I had immediately following the movie. 

"Honey, when I am old, will you feed me pie?"  I asked Gary so humbly.  He answered without hesitation, "No doubt.  I will feed you pie."

Now, many years later, the prediction is coming true only I am the one feeding him.  Most nights, he has difficulty cutting or slicing whatever I serve for dinner.  I have learned to automatically cut everything ahead of time for him.  In the last few weeks, I have also noticed that he plays with his food frequently.  While I thought he just didn't like it or was star gazing, I was wrong.  One night I picked up his fork and started feeding him and he ate very well and much faster.  I tried again the next night.  Guess what, he has difficulty eating by himself.  So, was the movie an omen for the future?  Maybe.  It could have just been a sign of normal aging and loving your life mate.

Yes, Gary, I will always feed you pie....or whatever else you need.