Saturday, January 20, 2018

Sunsets and Sunrises of Life after Dementia

It has been 12 days since Gary died of the effects of Frontotemporal Degeneration (FTD). 

Since then, I have been at Canyon Ranch in Arizona taking care of my medical, exercise and spiritual needs.  I am taking care of myself for the first time in years. It feels liberating.

I am in the desert in winter.  Two of the most magnificent things about this naturally placed resort are the sunsets and the sunrises.  Since they signify endings and beginnings of days, I felt it appropriate to take the advice of a dear friend and write about my experiences with both.

For the last few evenings, i glanced at the sunset.  It was always beautiful....however, last night I chose to study it from the magnificence of nature.  

It was a spectacular day.  Perfect in almost every way. I found a perch with an unobstructed view. As the light started to change, so did my mood.  The obvious fact here is that no matter how wonderful or desperate a day is, the sunset or darkness always comes. 

The sky was full of clouds as well as blue (starting to grey) splotches.  I sat quietly, helpless against the oncoming darkness but glad for the experience.  Holding on to a good day is like life....eventually you need to rest. 

The colors in the sky became magnificent as the sun played against the clouds. One of the spirit guides here pointed out that the sunsets and sunrises are not as spectacular without the clouds.  In this evening, she was correct.  

Red. Orange. Yellow. Crimson. Blue.  Green and brown. All colors were displayed beautifully on the canvas of the sky.  I contemplated how each color stands alone but meshed together portray the beauty of it all. Just like life.  People and experiences are the colors and life is the sky.  We can choose to focus on one and get stuck there or see the whole picture.

As the sun started to really dip behind the mountains, the sky became very still. All clouds stopped moving and the beauty froze.  It was as if the universe was saying "stop and appreciate what you have."  I did.  I expressed gratitude for my existence and for all my blessings.

As it grew dark, I felt a completion for my day.  It was good.  I looked forward to arising this morning and watching the sunrise from the same spot.

I slept, for the first time in ages, like a small child.  I awoke with exuberance for the coming day.  I made my way up the hill and found a great spot to sit and quieted my soul.  I closed my eyes and soaked in the cold.  As I opened my eyes, the sun was starting to dance on the clouds over the mountains to the right.  I

I could hear the world saying "Good Morning, Ada!"  It felt as if God was painting the canvas of the sky.  I sat for a few minutes in complete solitude as I watched the sky change.

The color changes were amazing as he moved his hand back and forth and made the clouds appear as cotton balls.  It made me realize how fast things can change in life as well.  While we have intentionality and focus, we must not miss the cues given us by nature and life.

Then, in an opposite direction there appeared a small black cloud. 

I wondered if that cloud was symbolic of hard times in our lives.  While the sky around us is painted, the negative events are there as well. I pondered the black cloud in comparison to the disease that has so impactfully changed by life in the last five years.  Beauty was all around and I am glad that I could still see it despite the black cloud
Then, just like my life, in an instant, that cloud changed and had color.

While it was still a dark cloud, I could see if differently and for the beauty is possessed.  The colors now reflected were like living through a dark period and emerging stronger because of it.

As I sat there and absorbed the omnipotence of God, I realized that each day is a new day with new opportunities and how we view them make all the difference.

I then changed my body which changed my view.  Behind that mountain, the sunrise was again changing.  Just like our lives.

I sat there for another 1/2 hour and soaked in nature.  

Dementia can drastically change our lives.  I am choosing to now enjoy the sunsets and the sunrises.  Looking at the metaphor in these events will help me sustain the peace that I have found here.

I wish Dementia on no family.....but I do know that God is there through it all.....I just like the cloud hiding behind the mountain in the last picture....


Sunday, January 14, 2018

Gary's Journey has ended. Rest in Peace dear one.

It was Tuesday and I had a bad cold.  I was on my way home from work and had the thought, "perhaps I should go by Gary's and visit."  I again knew that I should not take a cold to the Memory Unit so I re-routed for home.  The phone rang with the Sunrise Assisted Living ringtone...I immediately knew something was wrong.

The voice on the other end informed me that Gary had not eaten since the day before at lunch and had his jaws on lock-down so he could not eat.  He was also not drinking water.  I somehow knew this was the beginning of the end. I explained that I had a bad cold.  Her response was, "We have face need to come."

I spent most of the next week by his side.  I sang to him, prayed for him, talked to him about memories and listened to him breathe.  

By Friday, he had a catheter as his kidneys were shutting down due to no water.  He took three teaspoons of water from me on Thursday and four teaspoons on Friday. He had chosen to die. The output from the catheter was near black. I stayed with him each day and went home at night to try to sleep.  The whole week from Tuesday to Sunday, I slept about 12 hours total.  I was exhausted but knew the end was in sight.

On Sunday, we started the oxygen and started monitoring the number of respirations emitted from his frail body.  His last weight taken was 135 pounds....down 50 pounds from when he moved into memory care one and a half years ago.

Gary's daughter joined me for several of the days where we sat vigil....waiting for his death.  We sang to him, had visitors with guitars and prayers and basically sat quietly and watched as his right lung collapsed. 

I awoke at home on Monday morning after two hours of sleep at 2:30.  I struggled to go back to sleep but arose at 4:30 am and decided to go ahead and join Gary at the unit.  I took my belongings needed to stay with him indefinitely.  I would not be coming back to my home until he died.

Normal respiration is between 12 and 20 breaths per minute.  For days, Gary was at 24.  He was on morphine to assist with keeping him from struggling.  The Hospice doctor visited on Monday morning and decided it was time to put him on continuous care.  Simply put, he would have a nurse 24 hours a day that could administer morphine and other comforting drugs until he dies.  I was glad to have the professional company in the room. The doctor met with Heather and I and said he would live 12 to 24 hours.....48 on the outside.  His physical strength and lack of heart or lung issues would slow down the process.

The thoughts that occur during this time of waiting are incredible.  I had very few tears or grief.  I had always said the last few years had already given me time to grieve.  I, apparently, was right.

On Monday, around 3:30, his breathing changed and became more shallow.  His breathing count was sustained but it sounded very differently.  The nurse's job  at this point was to watch him and give comfort as needed.  When this breathing changed, so did her demeanor.  She made no comment, but I knew the difference was a marked indicator or pending death.  

At 7:30, I moved to sit on the bed with his head next to my breast.  I stroked his head and chest and felt a man very different from the one I knew and loved.  His blood had been leaving his extremities for hours but now his entire legs and hands were starting to turn purple.  I thought at any minute he would die.  The nurse came over and examined him.  She indicated that it would not be long.  I sat there until my legs fell asleep and my pain was unbearable from positioning.  At 9:30, I moved to the chair where I could sit more comfortably but still touch him.  The nurses  changed shifts and I got to know the new nurse.  She suggested that I sleep and that she would wake me if anything changed.  I slept in the chair for about 45 minutes, rejuvenated and went back on death watch.

The night brought a stream of caregivers who were respectfully saying goodbye to a man for whom they loved and cared for for 1.5 years.  One of the ladies always referred to him as Poppy, like her substitute father. 

Around 12:30, I again sat on his bed and watched his coloring change once again.  His face had turned purple but the crown of his head was still white.  It gave the illusion of him having a jagged crown on his forehead.  His breathing had moved to being forced by his stomach muscles.

The nurse commented that she had never seen shallow breathing being sustained for that long.  Around 4:30, the room felt different.  I knew the Lord was near.  I turned on the Christian music station and again filled the room with soothing sounds.  His apnea had started. The nurse talked me through what would happen.  The science of the last breaths were accurately called by her.  

The song "Oceans - where my feet may fail" was playing.  As the song played out with a peaceful tribute to God, my husband of 32 years drew his last breath.  When the song ended, he left this earth.  It was the most peaceful experience I have ever had.  4:57 am on January 9...he was gone. I could not have scripted the last few minutes of his beautiful life any better than the unfold. 

We had to wait until an RN came to officially pronounce him dead, but I knew he was gone.  I called the folks I needed to call and then sat there.  Around 6:45, Heather came to sit with him and me until the nurse came.  We sat with his body for 3 1/2 hours before the nurse arrived.  His official time of death was 8:45 am.  I was exhausted and decided to leave.  Heather offered to stay until the mortuary came but I encouraged her to leave as well.  The nurses would stay with his body until he would be moved.

It was over.  The beautiful life he had lived was done.  The agony bestowed on my family from the Frontotemporal Degeneration was finished.  He was at peace.  As I left the room, I kissed his forehead and noticed that he was again turning from purple to white.  He was being restored.  This was symbolic of what was happening behind the scenes. I knew as Gary ascended to heaven that his body was being restored to one of health, memory and wholeness.  It was beautiful.  I felt at peace. His journey was done.

Mine is just beginning.

Friday, January 5, 2018

The last days....

Watching your loved one die has to be one of the hardest things to experience in life. I have sat next to my husband, Gary for the past three days and watched him cascade through the final stages of life.  Frontotemporal Degeneration is the devil in the form of disease.  It is evil and no God loving man or woman should have to endure it.  Not only is the patient a victim but also the family, loved ones and caregivers.

Some of these caregivers have cried more than me when working with Gary.  They are all professionals but humans first. I am simply numb.

After a night of partial sleep, my daughter and I went to breakfast and talked.  No particular subjects were present on the agenda but it was nice to have companionship.  I then came to Sunrise Assisted Living to sit vigil with my husband's body.  It is still alive but I am convinced his soul is not here.  

Upon entering his room for the first time in 12 hours, I was rocked by the difference in his body.  It is almost as if his head is changing shape. His face is gaunt and has little color.  He now has a catheter and the output is only liquid from his body as he has had no water. He has had morphine to assist with...I'm not sure what.  His limbs are starting to show the ugly color of blue.

I loved this man so much for 32 years.  We had wonderful adventures and shared great times as well as many typical marriage challenges.  Watching him take what are undoubtedly his near last breaths, I am full of love, anger, rage and praise for a precious Lord who allowed such an amazing man into my life for as long as he did. 

On the table beside his bed is a copy of our marriage vows.  Ironically, part of my vows to him stated:  "If I can begin to touch others as you have touched me, I shall praise God for allowing such a strong love.  For you, my dear, are special and I am blessed to be your wife."

I have been very blessed and can rest in the fact that I know Gary was strong in his devotion to God and that he will soon be free of disease and made whole in Heaven.

I will write again when he is officially gone...with God's will, it won't be long.

Thursday, January 4, 2018

Watching Him Breathe

Just hours after my last call from the Hospice Chaplin telling me she had prayed over Gary, I got another call informing me that he has stopped eating and drinking.  So, I went to the Memory Unit to start what has been a very interesting two days.

The Hospice nurse who called me had been off work for a week and came back to work.  Upon entering Gary's room, she noticed a marked difference in him.  It was not hard to miss.  I, too, upon entering his room saw a broken man.  His eyes seemed to be sitting deeper in their sockets and he appears significantly thinner.  His jaws were sagging.  I received a universal message that my husband is dying.  I have known this for a long time, but the evidence was very visual.

So, I have spent the last day and a half, mostly, at his side.  The first night, he never awoke during my visit.  Actually, visit is not the correct noun.  I will now call it a vigil. He had not eaten since the night before and was clenching his jaw tight shut when offered water. Whether he is mentally aware of his actions, his body is shutting him down.

Lacy, one of his original caregivers (Angel) greeted me to tell me that she had also been on vacation and had experienced a dream about Gary.  She described a vivid dream where she walked back into the unit after being gone and saw me and Gary sitting in the great room talking.  She said he got up from the chair and walked over to her and said, "Look Lacy, I can talk again!"  She said we were both very happy.  She woke up and felt that the Lord had sent her a message that Gary would be whole soon.

One of my pastors came to sit for a while with me.  It was nice to have companionship to talk and reminisce about Gary's life.  I am mostly alone now.  I told her that most of our lives together had been just Gary and myself and that once again, it appears that it is just us, alone, losing the final battle.  Or perhaps, he is winning the final battle.  

I do not ask friends or associates to come to the Memory Unit to visit or to sit with me.  I would feel wrong putting people in that position.  Everyone deals with death differently.  I am getting tremendous support from texting, Facebook, Skype and phone calls.  Even when loved ones do not know what to say, their thoughts and prayers are special. It will keep me from self-destructing. (You know who you are and I thank you!)

I sat with him all day yesterday and provided basic care.  We tried to give him water using a swab and I discovered that he had pocketed (held in his mouth) the last dose of applesauce and medicine he had received the previous night.  The poor man could not swallow it.  His mouth was cleaned and he then took about 4 teaspoons of water before his again refused to open is mouth.

Sitting and watching someone actively die is an amazing experience.  The professionals say that perhaps he is just taking a break from food and water and that he might rebound.  I don't agree.  If he does not drink or eat, they predict his demise in 2 to 7 days.  We will re-evaluate daily.  

I am spending my days sitting quietly with him and watching him breathe.  I stroke his head and arms but there is no reaction.  Its as if his mind has already left his body and his body is just hanging out.  The days are long and grueling.  I am not filled with any type of emotion including grief.  Any emotions I have are tucked deeply away while I do what I do best which is "take care of business".  I will fall apart later.

Since I was told that his death was probably not going to be last night, I gave myself some solace and stopped for dinner.  I sat at the bar at a local establishment and had a magnificent steak salad and a martini.  A subsequent chat with a local business owner who just moved to the area took my mind off my troubles for a few minutes.  I ended the conversation with him by sharing my blog address and talking to him about his 90 year old mother.  Its nice to talk with people.  

I came home and sat in front of the television.  The family was off on an adventure and I was alone.  There is a constant nagging in the back of my mind that the phone will ring and it will be notice of Gary's departure.  

It is 4:30 am and I am about to shower and make the sojourn to his facility to sit with him today.  I have taken off work during this time to spend with him. I have to slow my mind and body or I will go crazy. 

Thanks to all for your prayers and well wishes.  

Tuesday, January 2, 2018

"This is the Chaplain from Hospice"

My phone rang was a call from Hospice.  Normally, the caller says, "This is so and so from Hospice and this is not an emergency."  Not today.   The caller said she was the Chaplain from Hospice....and then she paused. I took a breath as I filtered through a wave of emotions.  The brain is amazing in that it can go through so many emotions so quickly. 

I thought:
"Oh no, not today."  I felt dread.
"Finally....." I felt relief.
"I wonder how he died?" I felt curiosity.

But, she was not calling to give me bad news, rather to tell me that she prayed over Gary and that "in death and dying, it is important to know that they can still hear."  So, she described whispering a prayer in his ear and that she had read him a Bible verse. I thanked her for praying for him. I also told her that this was the first Christmas in 32 years that we did not share our day.  (In fact, I neglected to visit him on New Years.....I actually forgot it in my plans.)

We had a short chat about my grief and how I am dealing with it.  Of course, I shared the address of this blog and I do hope she will pass it on to other families.

After the call, I realized that some emotions that I did not feel during those few quick seconds were grief, sadness, melancholy or regret.  I felt neutral.  I think I am ready for his death.

Wednesday, December 27, 2017

"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.  

Tuesday, December 19, 2017

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. 

Sunday, December 10, 2017

I am okay!

For the past few weeks, I have been waking up in the early morning around 2 or 3 o' 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! 

Monday, December 4, 2017

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.  

Sunday, November 26, 2017

He is here in Spirit.

As many of you know, my husband lives in a Memory Care Unit under the care of fantastic caregivers/angels and of course, Hospice.  

We are all shocked that he is still alive.  Here he is yesterday right before falling asleep during a Frank Sinatra sing-a-long.  Frankly, had I not left, I too would have fallen asleep.

He held my hand as he fell asleep.

It is amazing to me that all the folks who live in the unit with him have some form of Alzheimer's or Dementia.  To look at some, they seem perfectly "Normal" until they talk.  Others look afflicted, like Gary.  I do not understand why this disease exists.  It serves no purpose other than to give caregivers jobs and to support vendors who have built a business around it.  Then, there are the families.

On Thanksgiving, I watched families come and go.  Some handle the disease well....others have no concept of the depth of it due to denial.  I watched one son show pictures of family to him (like I've done many times) hoping for some shred of recognition.  The act is not for the patient but rather the loved one.  The patient doesn't give a flip. We all hold on to some hope that recognition will be there for some short moment.  I like to think I know better and that Gary is gone and will not "pop" back.  But the truth is....I still go there to visit the body that is Gary.  Not the personality.

I bought a new home a few months back and decided to buy some new Christmas decorations and decorate the last two days.  So many memories flooded my mind about Christmases past with Gary.  They were all charming memories.  We decided years ago to not buy each other gifts at Christmas but rather make memories throughout the year.  Ironically, only I have the memories. He will never step foot in this house that I now call home.  

When I first met Gary in 1985, he drove a VW Camper Van.  My the good times we had in it...before and after marriage.  It died a slow, rusty death in 1988.  Somehow, those who knew him back then tend to think of him as an old hippie turned "yuppie" turned entrepreneur turned investor turned dementia patient.  So, yesterday as I was checking out the new Christmas decorations, I saw a large VW van figurine with a Christmas tree on top right next to the was meant for me....  I had to buy it....

Later, when I had finished all decorations, I found the perfect spot for the van.  On the front porch, at the entrance of the home.  While he will never come in that door, he is here in spirit.

Merry Christmas season, Gary.

Wednesday, November 22, 2017

Missed Call: Hospice Nurse Betty

While I keep my phone with me most of the time, due to circumstances I don't always have the ringer activated. Such was the case yesterday.  During a meeting around 2:00, I glanced down and saw the following:

Missed Call
Nurse Betty

My heart always leaps when I get a call from anyone at Hospice, even the music therapist.  After all, its never a call to give GOOD news....

I read the voice to text version of her email.  Since my version of this application is not perfected, all I could understand from the message was that nothing was an emergency but morphine was also in the sentence....the two don't necessarily go together, so scratching my head, I called Nurse Betty.

She promptly answered my call and explained that Hospice had been called in the middle of the night because Gary was "screaming in pain".  Since he is non-verbal, the situation was rather unusual and of course, no one could detect his pain.  So, they administered morphine and he slept the rest of the night.  

She was calling me to let me know that he was better and had eaten all his breakfast and lunch.  She was acting as if I had known about the events from the night one had called me.  I was livid.  Then again, I could not have done anything but worry.  

I expressed my discontent with the situation.  We determined that the last time he was "screaming" was two years ago related to arthritis in his hips.  They had stopped the supplement which aided his pain so I told her I would bring some over that afternoon.

Fast forward past the trip to the Emergency Room to determine if my ankle was broken (its a sprain) and past the trip to Sprouts Grocery to pick up the MSM promised to Nurse Betty.  I arrived at Sunrise to find Gary being wheeled out of his room, freshly groomed and up for dinner after a peaceful afternoon nap.  I guess morphine helped with the peaceful part. 

I rolled him over to the table and hugged on him.  His eyes were wide and showed no signs of immediate distress.  I sought out the Manager to inquire about the night before and the events that transpired.  She had been called at 3:30 am by one of the caregiver/angels.  She reported that while walking past Gary's room she heard him making a very loud noise that was described as a cross between a groan and clearing his throat. He often makes a noise while eating that has a lower volume than described here. It was determined that he was in pain and they ordered the morphine.   

I expressed that I was concerned that no one called me.  Was it the Unit's responsibility or Hospice?  I didn't care but asked to be called in the future.

I returned to his side and fed him dinner.  During the dinner, he again started making this noise.  It was a gutteral, ear piercing sound.  I cannot truly describe it but the brain is led to think he is either choking, in pain or distressed.  He was breathing so I knew it was not choking.  The son and daughter of one of the other residents were also sitting at the table.  Everyone stays so calm as we know the events that occur at any moment of days in the Memory Unit could be pivotal in all their lives.  The son, a man about my age, looked at Gary with compassion and a mix of horror.  

We carried on our conversations as I rubbed Gary's back, neck and head.  It was if he was trying to tell me something in his noises.  I imagined that the noise was him trying to find his voice.  I asked him what he was trying to say.  Of course, he could say nothing.  His eyes were full of torture while at the same time, completely void of is difficult to describe if one has never seen the Dementia stare.

I will never know what he was thinking or trying to tell us.  As one of the angels walked back and forth taking care of other residents, his eyes followed her.  Back and forth.  He was watching her....I have no doubt.  This is a behavior not exhibited by him in many months.  He looked so desperate even though his noises had stopped.  As he began to fall asleep I dismissed myself from the table and we all said our "so longs" until Thursday's Thanksgiving lunch.  We all assume that our family members will still be alive two days from now.  

Hospice.  Morphine.  Screaming.  Fear.  

Those are all terms that are a real part of Gary's life.  It is pitiful I am coping.  I await the next phase of his death and of my life.  They are polar opposite in their direction.

Sunday, November 19, 2017

Am I really ready for his death?

Sometimes life has a way of smacking us across the face and behind the head and kick us in the shins.....other times, it quietly taps us on the shoulder and whispers in our ears "Hey, you aren't paying attention.  Wake up."

This year I have experienced the smacks, kicks and pain of the following:
My father died in February
My sister died a week later
I totaled my car and could have died
I bought a house that has had "issues"
I had a cancer scare
I had surgery
My car has been in the shop for three weeks now.... husband is in hospice with Frontotemporal Degeneration.

All those things have kept me busy this year along with a few other distractions that won't be listed here....

However, this morning, I opened Facebook and one of the caregivers from a FTD group has posted the link to this Ted Talk.

I was in my bed enjoying my morning coffee when I clicked on the video.  It starts with a young woman saying that her father has FTD and she wants to kill him.  She was serious.  Well, watch the video and you will see why all those of us who care for FTD patients have felt the same way at one point or another. 

As her story unfolded, I started feeling her angst.  I have lived it.  She references a time when after she thought her father's personality and spirit had left his body and remaining was a shell of the man.  This is when she considers "getting him out of that body".  Then something happens that makes her realize that his spirit is still connected to his body and she commits to continuing visiting and watching him "live".

That story was the quiet "tapping on the shoulder" that I referenced above in the opening paragraph.  It said to me that despite the stare, lack of response and gone-ness of my husband's personality that he is still there.  I see small signs of it every so often. Rarely. I have ignored them so its easier to let go.  Its easier to rationalize why I don't go there and sit with him very often. 

Soon, he will be gone for good.  When the spirit leaves the body and he goes to be with his Lord, what will I do?  What will I feel?  Recently and up to this morning, I thought I was ready for his death.  But after watching that powerful talk on YouTube, I am no so sure. 

Thursday, November 16, 2017

Alone for Thanksgiving

Tonight is the Thanksgiving Dinner at the Assisted Living Facility where my husband Gary lives.  For the second time, I will go.  Frankly, I don't want to go.  Things have changed so much since we moved him there. 

Last year at this time, he could still talk even though he was repeating what he heard.  His voice was still audible but weak. Now, if he does mouth anything it is inaudible and ties to little.

I was in his midst on Tuesday. When I prepared to leave, I put my face next to his and said our trademark "Love my babes!" which was our way of saying that we love each other.  His lips slowly parted and he mouthed with no sound "Love my babes."

I have no doubt in my mind that he felt something or remembered some instance of having heard this before that moment.  I will take it as a win. 

As I arrive tonight, I know that the food will be excellent and I will see family members of other residents that I haven't seen in a while.  All the families are at different places emotionally.  It is interesting to be ahead of them in the progression of the disease and to watch them go through it.  My supposition is that there are other families who are ahead of me in their journey and are watching me with the same eye.  There is a hell and a magic in not knowing what is happening to us next.

I used to go to the Memory Unit many times a week and stay an inordinate amount of time.  I don't do this anymore.  I don't want to go and sit and watch Gary sleep. 

For the first time this year at Thanksgiving, I have no plans.  I have to work up to the holiday and have chosen not to go with Heather and Xander on their holiday adventure.  I made a comment to a friend yesterday that I wasn't sure how I felt about being alone on Thanksgiving and that I didn't think I would like it.  Rather than let me stew in my "misery" the response was a quiet "How was your experience in Mexico?"

The reference was a trip I made last spring to Mexico by myself.  I had a wonderful time because I had the right attitude and was just accepting of the adventures I found.  So, my countenance immediately changed and I am looking on the upcoming holiday as an opportunity.  In fact, the truth might be that for some time, I may be alone in my life walk.  It is important that I don't lose myself in this phase of my life.  

Sunday, November 12, 2017

Alzheimer's walk speech

Yesterday, I was one of the kick off speakers at the Alzheimer's Orange County Fundraising Walk a Angel's Stadium in Anaheim California.  I had three minutes to share my "story". 

It was exciting to speak in front of a group who all feel the same pain.  The pain of watching a family member die from such a tragic disease.

Today, I went to visit Gary.  He was more awake than I've seen him in months.  He actually moved his hand toward me and grabbed my hand.  He would not let go unless I pried his hands from mine while I fed him.  As I sat at a table with other Memory Care residents and their adult children, I realized that I am the only young person represented there who is married to a resident.  The rest are all children of patients.  I try desperately to not be so happy.  I try to be upbeat and make them all happy. 

I asked one of the angels to tell me what he weighs now.  145 pounds.  When he moved in to the unit in June of 2016 he weighed 175 pounds.

As I fed Gary, he seemed to follow me.  I got up at one point to get him a tissue, his eyes followed me.  This was new.  He needed a tissue because his nose was running and then I realized he was crying.  I have no way of knowing why.  That is torture.

As I decided to leave, I hugged him and kissed on him and told him that I would be back for the Thanksgiving meal.  I felt guilty to leave but had things to do for my normal life. As I walked toward the door, his eyes followed me. The guilt killed me.  I went back and kissed on him and said, "Gary, I am leaving now.  I will be back on Thursday for the dinner.  I love you.  If you need to go see Jesus before I get back, its okay."  Then, I felt guilty for saying that.

So many people read my blog and make comments about what a good and loyal wife I am.  Bullshit.  I feel so guilty when people think I am a good wife.  I might go visit once a week but the truth is:  I want a new life. I want a new love.  I want to be appreciated and feel valuable again.  I am a 54 year old woman who is vibrant and deserving of better.  If that is selfish, I am sorry.  I am not a saint.  I want love.  I want sex and I want a life beyond the prison of Dementia. I want hope for the future.

I digress,  So, back to saying good bye to Gary today. I left him at the dinner table. As I reflected on the day, I recall that I am probably one of the senior "caregivers" for people on the unit.  Gary has outlived a lot of the folks there.  I am close to running out of money to keep him there.  I often think that I will run out of money on the day he dies.  I hope so, as I don't know what to do beyond that day. 

Sunday, November 5, 2017

I need your help!!

I need your help!

Next Saturday is the Alzheimer's Orange County Fundraiser Walk at Angel's Stadium in Anaheim, California.  I have been asked to spend 3-4 minutes and tell my story about FTD. Wrap your head around that one for a minute.  Nearly 10 years of hell summed up in 3 -4 front of thousands.

I don't have a problem with Public Speaking.  I simply don't know which subject as a caregiver would be the most impactful.  So, all you readers who have followed this blog, please leave me a message at the bottom of this post and tell me:  if you were in the audience, what is most important for you to hear?  Is it a particular story?  A concept?  A coping mechanism?

Wednesday, November 1, 2017

Gary's 69 birthday!

Gary's birthday is tomorrow, November 2.  He will be 69 years old.  Unless something drastic happens today, he will make it to tomorrow.

It is so odd talking to people about him.  For example, in the grocery store the other day, a vendor mentioned that she liked my bracelet.  I told her it was a bracelet my husband had designed for our 15th wedding anniversary.  Of course a conversation started and I shared that he is in Hospice.  Her response was "Oh my, honey, I hope he lives another 20 years."  Looking horrified I told her that we are hoping for a speedy ending due to the situation.  Her next response was "Then, I hope Jesus takes him home soon."  I replied, "Me, too."

To some, feelings like these seem horrible.  To others who have known someone in this situation, it is normal.  I am nearly done grieving.  The only thing left in me regarding this whole situation is the Celebration of Life, cremation and starting over again.  Like a friend said recently, "You have grieved and now you are not looking forward to having to do it again for others."  Exactly. 

I will go there tomorrow and wish him a Happy Birthday.  I thought last year's birthday would be the last.  We were all wrong.  I know in my heart that he has no awareness of the day nor the year nor the occasion.  For all within the sound of my words, please pray for his birthday and a safe passage to Heaven.
This was Gary several years ago sailing past Pac Bell Stadium in San Francisco. 

Saturday, October 28, 2017

He's Still Here.....

I don't know how or why, but Gary is still among the living.  Today, I visited him at his Memory Care Unit.  He was seated with Janette in the open living area.  I have been around Janette for 1.5 years....apparently she is now blind or her eyesight is failing....I hate that these people are dying and breaking down.

One of the caregivers who has been there since we first moved him in was there and had been instructed to read to Gary.  I sat down to see what was going on and incredibly, she started reading to him from a paper that HE wrote 10 years ago about his childhood and the remainder of his life. I had forgotten that I gave them his autobiography when he moved in to the unit.  She spent about 40 minutes reading aloud about his life.  All stories I have heard a thousand times.  I supplemented information to each story.  

At the end, I asked her what her objective was in reading to him.  She said that her directions were to read to him and then annotate the results.  She opened the book and wrote "Patient had no response."  I am not sure what they thought would be accomplished.....Gary was oblivious. I suffered through the stories again.....but at the same time, they were glorious.  

To add to the least three of the caregivers have given notice or are looking for another job. They are either underpaid or moving is sad.  Why is it that in America, we pay the most important people the less? Firefighters.  Police. Caregivers. 

Bottom line:  Gary is still alive.The doctors had said that he would not make it till August 1.  Today is October 28.

Monday, October 23, 2017

Reagan Library Meltdown

So, I disappeared for a few days and drove up Highway One to see the Hearst Castle and The Ronald Reagan Presidential Library. 

I thoroughly enjoyed my time away and found a lot of rest and peace of mind, temporary though it was.  I seemed to be able to forget that I had a husband near death in Memory Care....that is, until I got to the part of the Reagan Library where a display held the letter that Ronald Reagan wrote to the American people upon being diagnosed with Alzheimer's.  As I stood there, I read his words and imagined the torture that he and Nancy must have endured by simply learning of the disease....much less the next years of their life. 

Here is the letter as found in the Reagan Library:

"Nov. 5, 1994
My Fellow Americans,
I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer's Disease.
Upon learning this news, Nancy and I had to decide whether as private citizens we would keep this a private matter or whether we would make this news known in a public way.
In the past Nancy suffered from breast cancer and I had my cancer surgeries. We found through our open disclosures we were able to raise public awareness. We were happy that as a result many more people underwent testing.
They were treated in early stages and able to return to normal, healthy lives.
So now, we feel it is important to share it with you. In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it.
At the moment I feel just fine. I intend to live the remainder of the years God gives me on this earth doing the things I have always done. I will continue to share life's journey with my beloved Nancy and my family. I plan to enjoy the great outdoors and stay in touch with my friends and supporters.
Unfortunately, as Alzheimer's Disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes I am confident that with your help she will face it with faith and courage.
In closing let me thank you, the American people for giving me the great honor of allowing me to serve as your President. When the Lord calls me home, whenever that may be, I will leave with the greatest love for this country of ours and eternal optimism for its future.
I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead.
Thank you, my friends. May God always bless you.
Ronald Reagan"

As I stood there alone, I began to cry.  Hot, small tears flowed down my cheeks. All I could do was walk off and do my best to squelch the emotion.

The truth is, every journey is individual and different.  Even having gone through the Dementia diagnosis and years of hell, no one can imagine what another family will encounter.  I was so angry that the disease (which has no economic, sex or racial filter) can devastate such a great world leader or anyone else for that matter.  Why did it devastate my husband? 

For those out there who are still living with the disease or care giving for one who is....I can only wish you peace and a pain-free end to the suffering.  I wish for it everyday.

Wednesday, October 18, 2017

If you can't afford long term care insurance, you can't afford long term care!

Tonight, I will be on vacation.  I am escaping Anaheim, my job, my responsibilities and hopefully, my thoughts for a few days.  I have done all I can do for now to take care of things while I'm gone.  Don't ask where I'm going....just trust that it is away and near the ocean.

I visited Gary on Saturday.  I fed him his pureed meal of chicken, carrots and potatoes.  I tasted it.  Not too bad.....apparently it is real food and it is just blended.  He ate every bit.

When I arrived, he was sitting in a reclined position with headphones on his head and his eyes tight shut.  The music playing was a Rock Pandora station....Grateful Dead, Pink Floyd, Credence Clearwater, etc.  I sat there for about 1/2 an hour and watched him.  He showed no reaction what-so-ever. When the food came, we stopped the music and he opened his eyes. 

I was thinking.  I can escape for short periods of time.  His only remaining escape from anything unpleasant is to die.  I talked to the manager of the unit and told her I was going to be a few hours away and to call me if needed.  She said that "we shouldn't need to....he's not there yet."  She also confirmed what I have always been told.  He will probably die from pneumonia or asphyxiation. 

Front temporal Degeneration is a cruel disease. It has no selection process for who gets it.  It could be anyone.

Financially, I am close to being out of resources to pay for his care.  Very close.  It is so scary. 

The advice I would give families is to get long term care insurance while you can afford it.  If you can't afford long term care insurance, you can't afford long term care.  Think about it.