Monday, November 28, 2016

My heart cracked a little more....

Gary stared at me tonight.  And he stared.  And he stared. Until this moment, I have no idea what he was thinking.  There was no blink and no emotion.  He was holding my hand after dinner because I put my hand near his.  He held it quietly and every few minutes would tickle my palm.  

He looked at my face.  He looked at my hair.  He looked at my boobs.  I asked him, "Do you know who I am?"  No response and no reaction.  "Do you know my name?"  No response and no reaction.  "I am Ada, your wife."  Margee was sitting at the table and snickered.  She looked at me and winked.  He just stared at me.  After a few minutes, I said "Why are you looking at my hair?" He said, "Its pretty."  Wow.  He was there for the moment.  In reality, I think he was there all along but just could not put words to his thoughts. 

Then, he started talking.  All words were barely audible but I picked up a few sentences.  He said, "Its 79 degrees." He was looking at the thermostat.  Then he said, "Take my blood pressure."  We were sitting next to the nurse's station and she was taking blood pressures. He overheard. "Watch the movie.  Sing a song.  Dog is a beggar dog. " 

I was tired and conflicted.  Is the next moment another one of clarity?  Will I miss something if I leave?  I sat for a few more minutes and enjoyed the scratching of my palm.  I love him so and don't want to miss any moments.....but I felt the need to leave.  I kissed him on the lips and the forehead.  I had to pry his hand from mine to leave.  My heart cracked a little more than it has before today.  I'm not sure how much more it can crack without falling in two.

Saturday, November 26, 2016

High Activity in Memory Care

After a week back on his seizure medication, Gary has had visible improvement in cognition and responsiveness.  I know not to get my hope up for any long term improvement. It hurts too bad to get disappointed.

Last night, I saw Gary for dinner and he was chatty in complete sentences .....they didn't make sense for the context of the conversation or what was going on the room....but complete sentences none-the-less.  He held my hand and would not let go.  If I tried to get up to get more water or talk to another resident, he held on.  It was a cross between sweet and scary.  I could not tell what he was feeling.

Today, I went to visit about 10:30 am with the plan of staying through 12:45 and then meeting a friend at the grocery store.  He was sitting in his chair sound asleep.  I said hello and he raised his head.  He was in such a stupor that his eyes rolled around and he went back to sleep.  I took his hand and held it.  He grasped my hand and went back to sleep.

I sat there for almost an hour.  The room was busy with activity.  Nancy, who is non-verbal and confined to a wheelchair was quite lively today.  She recognizes me now and smiles when I smile at her.  I talked to her for a while and she laughed. 

Then, Margee, who is normally quiet and holds her hand over her mouth, was sitting with both hands on the table.  She watched Annie the dog lick my toe.  Margee laughed out loud and said, "That dog licked your foot!  How funny!" Her eyes were bright.  Throughout the time I was sitting with Gary, both Nancy and Margee had unusual cognition of what was going on in the room.

The kitchen staff delivered the food and left the door open for too long causing an alarm to sound.  One of the funniest residents, Norbert, said, "Hey, one got away!"  All the angels laughed! Debbie was helping with cookie baking. I wish their families were here to see it!

It made me stop and think that perhaps there are times when Gary has moments of clarity and I am not there.  Do their families think of me?  Since I'm not here all the time, perhaps the families are there more than I realize and I should not feel so sorry for them. 

I chatted with Juan, one of the caregiver/angels.  He indicated that Gary has been very cooperative getting in and out of bed and sat down by himself on the shower chair.  He certainly noticed the improvement.

The morning moved on and it was time for lunch. I awakened Gary from his deep sleep.  He perked up and had cheese pizza and four glasses of water.  I had to leave him.  I am not sure of his level of activity today.  I do know that he knew it was me holding his hand.  I treasure every moment of love I can get.

Tomorrow is a new day.  His disease is still terminal and we have no way of knowing how he will be from day to day.  I don't mean to sound morbid.  I seem to stumble through most days feeling empty.  My purpose has changed....or has it.  I am still Gary's wife and I still take care of him. The only thing is, there is no reciprocation.  I miss our lives together. 

Juan asked what Gary and I normally did on Holidays.  I told him of times we rented a cabin in Yosemite and skied and ice skated under Half Dome.  There was a time when we went to Monterrey and sat on the beach on Christmas eve under a full moon and the sand looked like snow.  Oh yes, and the trips to Napa to eat at the Napa Valley Grille and drink Opus One. So many good times.  What will holidays bring in the future?

Wednesday, November 23, 2016

That is Johnny Cash.

"That is Johnny Cash."  As I sat feeding Gary his salad for dinner, he heard "Were You There When They Crucified My Lord?" playing in the background.  Gary not only identified the singer, but said it in a full sentence aloud.  What a blessing!

Immediately following this verbal expression, he saw two slices of watermelon on his plate.  Instead of having his normal blank stare, he looked at it and reached over and picked it up.  He started chewing on the red portion.  He ate in down to the white and laid the rind down on the plate.  This may sound basic, but for a person in the late stages of FTD, this is a miracle. 

I tested him to see if he would pick up his fork to eat the Quiche.  Nope.  I gladly fed him the rest of his meal. They angels had moved the furniture around in the room and I had to give up my chair for the residents to get by so I stood up.  Gary reached for my hand as I stood next to him. 

"How Great Thou Art" was playing in the background I realized that a majority of the residents were singing along.  I watched one of the ladies as she sang, praised and put her hands in a prayer position.  I know she grew up in Gospel-appreciating Mississippi....she was transported there at that moment.  She was praising so deeply.  So were the others.  Gary held my hand tighter. 

I stopped to realize how appreciative I am the day before Thanksgiving.  Even though the following utterances from Gary's mouth made no sense, he is still talking.

In the past 48 hours, he was heard to say, "Gonna testify.
Dive a thousand lengths.  And the one you own. The one you ordered.  Oh, okay. Its tasty.  Howdy.  So close, I can't tell the difference.  This is getting strange."

The music therapist called me today to say that Gary recognized her when she walked in today.  He repeated everything she said and sang along with the songs.  I did not ask her for this feedback.  It is such a stark difference from his blank faced stare that she felt she had to call me.  I thanked her profusely.

God is good. 

Sunday, November 20, 2016

The Grief Finally Came out....

Saturday was very hard for me.  I started the day with Gary at "The Happy Place" or his Memory Care Unit for those who don't commonly read this blog.  My husband has been in Memory Care since June 30, 2016.  Since then, he has gone from ambulatory (though shaky) to wheelchair bound and mostly non-verbal.

I live in a nice home in the hills with a great view.  My step-daughter and 5 year old grandson live with me.  They are gone this weekend to the Central Valley to a funeral.  The house has never felt so empty. 

The Hospice Doctor started Gary back on the Gabapentin today....a seizure medication that he was on for three years prior to going into Memory Care.  His prior Psychiatrist put him on it to control his emotional outbursts.  He used to sound like he was in pain and would audibly yelp.  It stopped with the medication. When he moved to "The Happy Place", they took him off most medication.  So, we went full circle as the tremors he had been experiencing were a minor form of seizure. Time will tell if this ceases the fits of terror Gary has been experiencing.

He looked so peaceful right before lunch. He often sits with his eyes closed but appears fully aware of his surroundings. Recently he has had a severe stress crease in his forehead when he does this.  Today, the crease was gone and he seemed peaceful.  He talked a little more than normal. This was right before he went back on the medicine.

I left and went for lunch.  I drove a little out of the way in search of good was ok.  A pedicure did nothing toward cheering my sad mood.  The grocery store was a quick stop to pick up something tasty for dinner.  As I walked through the isles and looked at things that normally touch my desires, I found myself numb.  Nothing looked good.

As  a stress-eater, this was unusual. I picked up some Artichoke Ravioli and headed for home.  The bookwork that was needing attention was finished.  Dog fed.  Laundry done. What now?  Oh yes, I have promised our Valuable Sailing Library to a friend's friend who will hopefully circumnavigate soon. 

I packed the library and conjured many memories of our thousands of hours on San Francisco Bay.  Gary wanted nothing worse than to pull up ties and sail away.  We dreamed of it for years....he more-so than I .  I have an adventurous gene but he had a passion.  We had a deal.  He could buy the yacht when I had my mountain home secured for us to return to when the sailing adventures became too much.  We got the home in Panama about 10 years ago.  In his quest to earn the money to buy the yacht, he started to decline and lost great sums of money to bad investments, fraudulent opportunities, etc.  We never got the yacht. Deal broken.

So now, I packed up the Library and continued to also make the decision to add in his very expensive foul weather gear and personal flotation device.  He will never wear it again. The emotion tied to that decision had some finality that added weight to the day.  I choked down the emotion because I know there are many more decisions and emotional separations to come.

Television was the next order of the day.  While I was deciding what to watch, a friend sent me a great picture of his family at a Tree Lighting event.  It made me smile and I thanked him.  Little things mean so much more to me now.

I watched "I Walk the Line" and something in the mood of the film and the music brought a tear to my eye.  Then, the watershed of grief tears that I have been holding back for months began.  I thought of the day, Gary's peaceful face and the years of great adventures.  The grief for what will never be overwhelmed me and I sobbed.  During that time, I recall letting out a guttural noise that scared our dog.  She ran to my side and sat under my arm.  She stayed there for what felt like an hour....I lost track.  I let go of that grief, anger and overwhelm. 

As I went to bed, I was almost hyperventilating. I slept, uninterrupted, for hours.

Sunday morning brought rain, a perfect topping for my somber mood.  Church lifted my emotions. 

I got to Gary's in time to get him ready for lunch.  He ate a great meal and drank lots of water.  After the table was cleaned, I pulled his chair to face me.  He looked troubled.  I asked him why he looked troubled.  He very clearly looked at me and said, "I want to go home."  Quiet......what do I say to that?

I told him that he was home and that he lived in a great place with caring angels to take care of him.  As quickly as he surprised me with that though, his thoughts moved on to listening to the conversations in the room.  If I always tell him the truth, my conscience is clean.

The caregivers came to put him down for a nap.  I kissed him and said our usual love message.  "I love you from the top of your head...."   He continued with "to the bottom of my toes...."  "...and everywhere in you know what I mean?"  This time he said, "No, I don't know what you mean."  With that, I let them wheel him off and went on with my day.

Changes are inevitable in life.  However, Frontotemporal Degeneration accelerate those changes for a family and especially for a couple.  It cannot be controlled and it cannot be cured.  It can be a living hell if one chooses to see it that way.  When I started this blog, I made the decision to view it as an adventure.  That decision is often hard to live by......

Friday, November 18, 2016

A week of travel, excitement and a Memory Care death.

Whirlwind week, for me at least.

Monday found me on a plane to Dallas.  The afternoon consisted of Executive Director presentations and valuable bonding and tours.  The evening produced a fabulous meal at a Mexican restaurant with great conversation.

Somehow I ended up at the table with two fabulous colleagues who knew nothing about my life nor did I know anything about theirs.  We started talking and of course the subject turned to my marital life of caregiver and working College Administrator.  As the shock unfolded of Gary and my story, the mood grew more somber.  I felt horrible and apologized for going on about myself.  They kept asking questions so I kept answering.  Somewhere in the meal, I realized how pitiful it must all sound and I changed the subject. 

The next day found us flying to Miami and checking into The Trump National of Doral.  An exquisite resort with a perfect feel.  We had a fabulous meal and again, great sharing of stories from our varied educational backgrounds.  I am blessed to work with and for such great people.  While lying in bed that night, I received a return call from Gary's Hospice Nurse to discuss his recurring "tremors".  We volleyed back and forth with information and she said she would have the Doctor call me when he has examined Gary.  I went to sleep worried about the future, the outcome of this horrible disease and how I might handle the grief.

The next day took us to our Miami campus for more great presentations and a fabulous tour.  Around 1 we left for home.  I was home by 7:00 pm and exhausted.  After working 8:00 am to 9:00pm and traveling, I had nothing left.  I could not go to see Gary.

On Thursday at work, the phone rang.  It was the Hospice Doctor, Nurse, Case Manager, Memory Unit manager and I'm not sure who else.  The doctor had examined Gary and went through an extensive conversation that resulted in him diagnosing Seizures.  He will be back on a medication that he took for three years but was stopped when he moved into Memory Care.  I hope this does the trick.

We also discussed the possible duration of Gary's life.  It is unknown but we will recertify his "last six months" until it really could be six months or it could be.....well, only God knows.

Tonight, while at a Pinning Ceremony for the school, I had much time to think.  My brain went from the excitement of the week to my feelings of loneliness.  The ceremony drug on way too long and my emotions were difficult to keep in check.  I found myself angry, weepy and tired. 

The night of the first dinner, one of my colleagues had said something very interesting.  He said, "So, are you telling me that every time you are here with us is valuable time you are not spending with your husband in hospice?" As I pondered that question, I felt so out of control.

As soon as I could get on the freeway, I headed for "The Happy Place."  I hugged and kissed on Gary who grabbed my hand and I knew I had not been there.  After I pulled the knife out of my heart, I clipped and filed his too long nails and scratched his head.  I longed for him to hug me and really tell me that he loves me.  Those days are long gone an only I can hug him.

As he held my hand, he scratched my palm.  An old signal.  My heart lept with joy.  He looked into my eyes as he repeated everything he heard on the nearby television.  I explained to him what my week was like and told him about his new medicine and planned treatment.  He repeated, "Seizure medication.  Seizure medication."  He appeared to be thinking about it as I pretended that he was thinking "Great, maybe that will stop the hell I have been living."

When I left, Annie the dog ran out past me and one of the caregiver/angels chased her.  After we separated the two resident dogs, she raised up and said casually, "Did you hear about Mary P.?" I said that I had not heard.  She died on the 15th.  We walked to the entry piano and looked at her picture.  Sweet Mary.  She was the one that had a black and blue face a few weeks ago from a fall.  She had fallen, broken her hip and the family decided not to operate.  She died.  She died. 

As I stood there and looked at her picture, I felt overwhelmed with grief. Not just for Mary but for all the families in all the world who are suffering tonight as a result of this horrible disease.  I shed a tear and came home.

My dog was happy to see me and seemed to realize I was in a bad space.  I got a little extra love. My home is extra quiet as the family went to the Central Valley to a funeral. 

It seems I am alone a lot lately.  It is convenient because it gives me time to grieve and rest.

Sunday, November 13, 2016

"Earth has no sorrow that Heaven can't heal."

This weekend was very revealing to me.  I left Saturday morning to go back to Rancho Cordova to a reunion for the employees of my former college. It was a tremendous event, full of great love and friendship.  We had people come from Florida, SOCAL and Colorado. 

As I stood in that reunion room and looked around the room to see unconditional friendship and love I felt overwhelmed.  I was very near tears many times.  I wanted Gary to be there with me.....he went through 8 years at the College with me and supporting me and our students.  There were times when the College's food closet was empty with no donations and he would go to the store and refill the closet.  He took pride in supporting whatever was needed. 

Then, as planned, this morning I returned to our hometown church where we worshipped for 8 years.  We always loved those people who loved the Lord.  When I walked in, I was greeted by the worship team and I felt so at home.  At first, it was nice greeting everyone but things changed as the worship service started. 

I have been in that sanctuary with Gary during good and not-so-good times.  As his brain started failing, the church supported us and loved us when Gary would speak out inappropriately during the Pastor's sermon.  The Pastor was always very patient with him.  The week before we moved to Southern California, I had the opportunity to tell our story.  Now, I sat there alone. Thoughts and feelings flooded my brain and soul.

I felt the deepest sense of melancholy for the loss of my husband's brain to Frontotemporal Degeneration.  I felt the love of the Lord and a peace that transcends sadness.  It was holy roller coaster.

I took some notes so I would remember to formally recognize my feelings.  It was as if, due to moving away, I had separated myself from the fact that life was changing.  We were so busy moving, finding caregivers and performing at a new job that I separated myself from reality.  Something about sitting in that room brought it down to reality.  As the congregation sang in praise, tears rolled from my eyes.  They were grief tears.  I refused to really lose it as I knew I probably wouldn't stop crying. 

Even though I live every day with the reality that our lives will never be the same and that my husband is dying.....I somehow thought it would all change back to the old reality.  I sat there and thought, "I should not be here without him."  The survivor guilt was demanding every emotion I had to feel.

I asked myself, "Why did God bring me here today?" Was it to help me have these realizations?  Was it heal me?  The very next song contained the following words:

"Earth has not sorrow that heaven can't heal."  Wow.  God is amazing.  What perfect words for healing my soul.

On the flight home I felt exhausted.  Loving and grief take a lot out of a person.  I slept for a few minutes and when I got off the plane, I almost gasped for air.  I felt so empty....perhaps if I took in enough oxygen I would feel normal

So, knowing that I am leaving in the morning on a business trip, I took our dog to the kennel and headed for Gary's place.  He was eating dinner when I arrived and he sort of smiled at me but certainly made eye contact.  I noticed that he was clammy again.  The old issues were back.  He was not overdressed but was sweating.  Sure enough, during the meal, he had another tremor.  Apparently the CIPRO did not do the trick.  I reported this to the technician on staff and asked her to call the Hospice Nurse in the morning to ask for someone to look at him.

He ate dessert.  As soon as he was done, I noticed an increase in noise in the room.  I turned around to see about 20 small children and their parents descend upon the room. A church group comes on Sunday night to play in the room, play games and entertain the residents! The youth was magical.  I again became tearful because so many of the residents were lighting up and smiling during a time when they are normally heading off to bed.  I was standing next to Gary and stroking his hair.  I noticed one of the older children staring at us.  I turned and looked at Gary and saw what she did.  He was staring into the room with a very scary look on his face.  I can see why no children were running to him to engage him. 

In past days, Gary would have been on the floor with them and serving as the center of attention.  Now, he is the old man in the wheelchair who is eerily scary.  My heart was breaking. 

I felt as if he was probably enjoying the frivolity but I also knew that I had to leave to pack for my trip.  I turned his chair so he could see the activity and said goodbye.  The look on his face was a cross between terror and sadness.  I thought he would cry.  I grabbed him and held him as best I could in the wheelchair.  He seemed to relax.  I left.

I looked in the rearview mirror as I backed out of the parking space.  I, too had a cross between terror and sadness.  I sobbed in the car...for about 45 seconds.  That is all I allowed myself.  There will be time for that later. 

Wednesday, November 9, 2016

One day at a time

I visited Gary last on Sunday afternoon.  It is Wednesday and I managed to visit him for about 40 minutes tonight before going to Bible Study.

When I arrived at "The Happy Place", Gary was being fed his evening soup. I kissed him hello and had no distinguishable sign that he really knew me or cared....except for the pucker.  I quickly wondered if he would pucker to anyone trying to give him a kiss.  The caregiver immediately got up and let me finish feeding him.  His eyes were wide and he ate very well.  He was holding a massage ball close to his chest with his left hand and never let go.  His right hand was busy sticking his napkin in his mouth and in between his teeth during non-chewing events.

Of his choices, he clearly stated that he wanted beef.  As usual, he ate every bite.  The entire time he was either staring at me or at one of the other residents who was sitting across the table from him.  He could stare a hole through a wall.

After dinner, I glazed into his eyes while trying to figure out what he was thinking.  I asked him.  He mumbled something indistinguishable.....I will never know what he was thinking.

This week I asked the hospice doctor to complete my intermittent Family Medical Leave paperwork in order to prepare for the time coming when I have to be with Gary instead of going to work.  Last Sunday's tremors scared me into realizing that I cannot plan the dates or times of his needs.  It was very sobering to see that the doctor's estimate for Gary's "treatment" time is six months.  Six months......

I am not sure how to act, what to think or how to "be" with a death sentence hanging over my husband.  31 years of marriage.  6 months.  I will just take it one day at a time.

Wednesday, November 2, 2016

The Emotions of Gary's Birthday

What a day!  I am always mesmerized by the emotions God allows us to experience in just one day.

and many others I have probably forgotten.

I seem to be waking extra early every day.  I awoke this morning realizing that it was Gary's 68th birthday and the first since I have know him that we have ever been apart.  I always took pride in waking up in the middle of the night and putting his cards and gifts in an obvious place for him to find upon awaking. 

Today was different.  No Gary in our bed.  Instead, Diva Gerl was curled up next to me under the covers with a slight whimper when the alarm playing "Jesus take the wheel" sounded. By the way, that is the only way I succeed and survive...I try desperately to give him the wheel everyday.

I hurried to get to Sunrise to see Gary.  He was seated at the breakfast table fully dressed with his eyes tight shut.  I led with "Happy Birthday Gary!!!!"  He had no reaction but repeated "happy birthday Gary."

I inquired about his night and was told that no one witnessed a tremor and that his sweating had stopped.  Perhaps the CIPRO is starting to work.  While I fed him brown sugar oatmeal and read him his card from his stepmother, Anna, he kept his eyes shut.  It is amazing that he keeps his mouth shut until the very moment food is near his lips and then he opens his mouth. 

Due to birthday allowances, he got extra bacon and French toast!  I fed him about half and had to leave for work.  I hated leaving him but I chose to have no choice.  Little did I know is that just a few minutes later, his daughter appeared and visited him for his birthday.  She said that she wasn't sure he knew she was there because he didn't open his eyes.  I know that he knew because tonight during our visit, he mentioned her name. 

After an  extremely fulfilling day at work, I was late getting to him but made it in time for pie.  They were all happy that he had balloons and had blown out the candle on his cupcake.  What a priceless video!  I so appreciate the caregivers and their love for my man. 

We spent about an hour together sitting in the living room.  He whispered words quietly that were not heard.  He stared at me with an intensity that meant neither love nor hatred nor confusion.  Just a blank stare. 

He at one point, pulled my hand to his mouth and tried to chew my fingernail.  I told him not to chew my finger and he matter-of-factly said, "why not?"  So, I let him put my finger in his mouth.  He softly nibbled at it and said, "see?"

The movie "walk the line" was on in the background and he kept picking up lines from the movie and repeating them.  He was listening to the caregivers talking in the background and repeating their words.  I said, "why don't you listen to me?" 

I then realized that I have stopped really talking to him .  I only give him small cues or tell him I love him.  I guess I don't say anything interesting because I had discounted his ability to understand.  So, I started telling him about my day. 

I told him about the diversity issues that started my day.  I added some topics from my work load that in a prior life would have elicited advice.  He just sat there.  I told him about the rest of my day and again wished him Happy BIrthday.

All the while he was chewing hard on his dinner napkin.  I could not pry his fingers off it.  I gave up and held his other hand.  As I sat and just experienced our breathing, I had many thoughts.

"Would this be our last birthday together?"
"Does he have thoughts in that brain that he is not sharing?"
"Does he have thoughts?"
"Is this all an act and he is just enjoying being taken care of?"
"Is he just doing research for his idea of THe Circle of Life Holistic Health Care Center?"

In fact, this morning when I awoke, I was thinking about Gary's brainchild that was never built.  I could raise the money and build the center.....for wealthy people.  Or for poor people......that idea is next after I write the book.  Gary's disease cannot go unnoticed.  If God intended it, I will make it all happen.

So, as we sat holding hands and exchanging quiet pecks on the lips, Gary again closed his eyes.  He spends large parts of his morning and evenings with his eyes closed.  He was sleepy so I left.  I felt as if I had done enough for his birthday evening.

Life is so sad.  I find myself driving home wondering what the future will bring.  The loneliness is stifling.