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 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..... just like the cloud hiding behind the mountain in the last picture....

  

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 masks....you 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.

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.

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.  

"This is the Chaplain from Hospice"

My phone rang today.....it 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.