Monday, September 18, 2017

He's Declining

This whole experience with FTD is surreal.  I look at pictures of Gary from various stages in our lives and think "How did we get here?  What caused this disease?  Why did it happen to us?"  But, I will never know why and really, it is not important anymore.

Since Gary moved into Memory Care in June of 2016, my life has changed significantly.  I went through a stage where I visited him everyday and stayed for hours by his side.  As he started declining, I went less.  When I finally realized that he does not know me, I hardly go at all.  I have filled my life with distractions, some healthy and some not.  Its almost as if I am living in some alternate reality.

But, I'm not.  This is my life.  After church yesterday, I stopped by Sunrise to see him.  I was later than normal because I had gone to lunch with folks from church.  I needed the interaction.  I'm dealing with a lot of issues right now and I needed the sanity.  When I arrived, I stopped by the restroom first and encountered Nurse Betty from Hospice.  She takes great care of Gary.

I sat for a few moments and talked with her about him.  Her standard response is:  "He's declining."  I asked what that means and she gave me a "I'm so sorry look."  As I left the office, I noticed all the notebooks on the shelf dedicated to each patient.  A majority of them had a "NO CPR" on the binder edge.  Gary's holds the same label.  It is eerie knowing that if something happens to one of his systems that there will be no attempt at resuscitation.  But that is what he wanted.  Nature will just have to run its course.

When they opened the door to the Unit, Annie the dog greeted me with excitement.  I held her in my arm as I was told that they had already put Gary to bed.  His room was full of light and he was snoring.  I touched his arm and said my normal "Hey baberoon."  No response. 

He never knew anyone was there.  I looked at the pictures of our life on the wall and I left.  That life is only a memory now.

Melancholy fills my heart on so many levels. 



Friday, September 8, 2017

32nd anniversary thoughts

Tomorrow, September 9, is my 32nd anniversary of being married to Gary Gerard.  I was 22 and he was 37 when we married.  He was my soul mate, my mentor, my friend and my husband.  I say "was" because the man I just described exists only in the memories of those who knew and loved him.  I grieve for him as if he is already dead.

Dementia is killing him everyday.

Years ago, Gary and I decided to create memories on special occasions rather than buy gifts. On anniversaries, we usually went on vacation and on every 5th year, we did a big trip of some sort.  The irony of that decision is that I'm the only one who still remembers the memories.  I regret nothing but sure wish he was still mentally capable of hearing that I still love him and to have him tell me the same.

I so appreciate the years he and I had.  I am a much better person for having been married to him. 

The Assisted Living Center where he lives is having a luau tomorrow night and I will be attending and feeding Gary his chopped up anniversary meal.  He may or may not be awake so I may eat alone.  I am convinced he does not know me but I will dress up, put on my makeup and go as if I'm 16 going on a date. He deserves that even if he isn't awake.

I still love Gary but frankly, I'm not in love with the man that is now a shell.  Some may not understand but if I'm judged, so be it.  I do not wish Dementia on anyone.  It steals lives, memories and wipes out souls. 

SO for now, I will say Happy Anniversary Gary!


Wednesday, August 30, 2017

My New Home Without Gary

I have purchased and moved into a new home. For the most part, all of Gary's belongings are no longer there.  Charity has been the benefactor of almost everything. 

I have kept pictures, Gary's handmade dining table, furniture and memories.  Gone is everything else.  While packing a closet before the move, I found myself unloading a closet into a moving box.  Then I snapped and realized that I was packing Gary's winter hats, gloves and scarves.  I was just putting stuff in a box when it became apparent that I did not need to take these to the new house.  He will never need them.  Those items found their way into the charity box.  It was a stark realization, again, that he will never step foot in my new home.

While sitting in my new home watching the sun set on the mountains from my bedroom, I felt a sense of loss yet accomplishment.  In the old house, I often felt a sense that Gary would walk in the door, sit next to me and carry on a conversation like he did thousands of times before that.  In the new house, there is no eeriness around a thought like that because he has never been there.  This is solely my house without him.  I think its healthy at this point in his decline.

He is still alive.  He is declining.  He is now on mechanical food but I'm guessing soon he will be put on a puree diet since he often falls asleep mid-chew.  I've always cut his beard and moustache since he moved to the Memory Unit.  I missed last week due to the move....so, one of the caregivers tried to trim it.  As you can see, she cut it very short and referred to it as a "oops....".
 
 
 
She was trying so I showed no reaction.  I knew if Gary knew how it looked he would be embarrassed.  Its strange that I care still when I know he cannot know how it looks.  I want him to maintain any dignity he can.  He does not know me, cannot talk or walk and no longer even whispers.
 
 
During these few weeks, I have realized how very strong my near 32 years of life experiences with Gary have made me.  While I am human, I also just handle things. I break down once in a while but I always get right back on the horse. For example, the new house had a water leak with subsequent damaging being responsible for a pending duo-bathroom remodel.  So, some boxes will remain packed during construction as it makes no sense to dust up my belongings until later.
 
Heather and Xander are also moving in temporarily and we are all adjusting to life under a smaller roof.  She has helped a lot and shouldered moving many boxes while injured. 
 
I am about to be a widow.  I am alive and well. Gary will be gone soon.  Heaven will be a better place with him in it. 
 
Tomorrow, I am touring the Alzheimer's Association Office of Orange County.  Who knows what is next.....
 


Wednesday, August 9, 2017

Months to live....not weeks


Glen Campbell, a well known public figure with Alzheimer's died yesterday.  Despite the fact that I was never really a fan and certainly did not know him, I got very upset.  Why? Because I realized that no one has any power over this dreadful disease.

So, after work, I decided to lick my wounds by going to visit Gary.  When I arrived at the Memory Unit, he was sitting up, almost straight with his head down but wide awake.  The caregivers reported an afternoon of being awake, enjoying the music hour. Most importantly, his atrophy had seemed to subside for awhile and he was sitting straight.  It had to be more comfortable. 

I held his hand, brushed his hair, stroked his arm and saw a glimmer of a reaction.  It was a precious time.  I had a meeting and had to leave prematurely.  It was awful walking out knowing that such a precious moment was occurring and may not happen again....ever.   Duty called and I left.  I told him that I would be back tomorrow.....no reaction.

Every day I wonder.....the Hospice employees give me indications that they do not feel his death will be in the next few weeks unless there is some sort of system meltdown.  His vitals are stable so the word "months" was used.  

Meanwhile, I signed all the paperwork to buy a house.  It should close in both our names this week. It is odd that we are homeowners again but living apart.  What a cruel trick the universe has played on us.

Saturday, August 5, 2017

A Memorial for another Memory Unit Resident

Gary's Hospice Social Worker called me on Wednesday.  "Ada, how are you doing?"  I've heard that question before from a friend.  The implications are the same. The real statement/question is:  "Gary is declining rapidly and we all see it, but do you?  If you don't see it, you need to and if you do see it, are you coping with it?"  It would be a lot easier if they just asked the real question.

I had surgery on Thursday and am on restricted movement....can't lift more than 10 pounds and am enjoying pain killers.  I helped Heather (she did all the work)with a garage sale this morning and then went to see Gary. 

As I entered the Assisted Living Portion of the building, I saw the tell tale wreath of flowers and the framed picture of one of Gary's neighbors.  Ron has lived there since before Gary moved in.....he died on Thursday.  The caregivers had transformed his room into a memorial of his life.  The man was a gifted song writer.....I never knew.  I have seen him every week for over a year and only saw the man who was trapped in a demented shell.  I never thought of the family and 50 year wife portrayed in his life pictures.  I guess when Gary dies, many may feel the same of him.  They never knew the man I know and loved. 

Yes, I said "loved".  Other than the body that remains, the man I loved is gone.  Today, I was informed that yesterday Hospice put him on mechanical food since he has been falling asleep mid-chew during most meals. They served him soup, chicken and biscuits and green beans....chopped fine.  I fed him all of it.  He ate every bite and stayed awake.

After lunch, I moved him into his room which currently houses only him.  No roommate.  They have all died.  I'm sure there will be another person there soon as there are SO many needing care.  The other half of his room seems so barren and symbolic of the life that remains there.  Serene and austere. Such a contrast of what the old Gary would have wanted. 

I trimmed his beard and moustache very short.  I clipped his nails and tried very hard not to hurt the atrophied hand that used to be his primary.  While I was trimming his beard, I noticed the cord was getting tighter and harder to maneuver.  Gary was holding it with his good hand and had an incredible grip on the cord. I pried it out of his hands and finished the project.  He still looks handsome despite the dreaded FTD stare.  If only he could wake up and say one more "Thank you, Babes."  I know that I will never again hear his voice. 

I wheeled him back into the living area and kissed him on the cheek to say goodbye.  I told him that I have bought a new house and will be moving soon and that I needed to go as I have a lot to do.  I touched his good hand and immediately, he applied a grip of a man who knew someone there loved him.  I realized that I had nothing more important to do.  I sat there until his grip loosened and he fell asleep.  I knew he would be put to bed soon, so I kissed his cheek and told him that I love and miss him.

As I drove from the building, I cried a warm tear.  Only one.  I'm sad but don't seem to have any more tears for now.

Pray not for me but for him.  May his passage to his Lord's house be peaceful, sweet and painless.




Sunday, July 23, 2017

"Grandma, has Papa Died Yet?"

"Grandma, has Papa Died Yet?" That is a question I answered yesterday after getting home from visiting Gary while my Grandson was "helping" me pack boxes.

I visited Gary who was wide eyed, sitting straight and despite the look on his face, enjoying the unit dog Annie.

I stayed only a short while.  Each visit gets harder as I see a progressive decline even though his doctor says he is stable.

I explained to Alexander that Papa is still alive and that I would make sure that his Mom and I tell him when Papa goes to live with Jesus.  He nodded and seemed okay with the answer. 


Today after church, I debated visiting.  I'm torn between what Gary knows and what he doesn't.  So, I erred on the side of guilt and went.  What else would I be doing, right?


The caregiver was starting to feed Gary his water and juice with a spoon after his meal.  I went for a straw and she indicated that he cannot suck very well and that he gets his liquids by spoon now.  Of course, I did not believe her and helped myself to a straw from the cabinet.  She was half right.  He drank all of his juice through the straw very rapidly.  When it came to the water, he would not suck.  So, I fed him his thickened water until it was dry.  He "ate" it very fast. 


He was sitting over very dramatically and no matter what I tried, he COULD NOT sit straight.


I rolled him into the living room where there was less noise and action.  Ironically, the Statler Brothers cd was blaring in the background with great Virginia Gospel playing.  (Hometown singers).


He was whispering constantly but his words were indecipherable.  I kept my ear next to his mouth and showered his forehead with kisses while I listened to no avail.  I held his hand and a couple of times he scratched my palm.



I took off his sandals and gave him a leg/foot rub.  He made noises as if he enjoyed it.  Meanwhile, I playing some Grateful Dead (Truckin, Ripple, Touch of Grey)and Pink Floyd (Wish you were here, Comfortably Numb). He showed no reaction but each song is tied to a memory stored somewhere in the hard drive of his brain.  Perhaps  when he meets Jerry Garcia in Heaven, he can share those memories!


As I started to really get emotional again, I decided to leave.  I drove home and went swimming with our daughter and grandson.  They had no idea how timely and therapeutic the time spent together was for me.  I so appreciate having them in my life.

So, yes Alexander, Papa is still alive for now.....




Saturday, July 15, 2017

I couldn't stop crying....

I have been on vacation for nearly two weeks and only saw Gary once last Saturday for a brief time.  The Hospice Doctor says he is stable for now and rescinds his comment in the Winter that if Gary lived to August One it would be a miracle.  I guess miracles do happen.


So, after a week at Disneyland and the beach with five foster kids.....I am exhausted.  They filled my days, evenings and heart with love, hugs and accomplishment.  What a difference Philanthropy can make in one's heart.


I went to see Gary today.  I was very emotional going in and maybe shouldn't have.  I was teary all day.  When I arrived he was in his bed and they had not gotten him up for dinner.  The angels said he had been really sleepy all day and very hunched over in his chair. 


I walked into his room to see his eyes shut, obviously asleep but his left eye was partially open and rolled back in his head.  That was a little scary but his breathing was normal.  I touched his head, his hand and his arms.  No response.  So, I sat down next to him on the bed and waited.


At one point, he opened both eyes and stared off straight.  I said, "Hello Baberoon.  There you are!"  No response.  So as I was wiping tears, I saw our framed wedding vows by his bed and decided to read them to him.  With tears pouring, I read aloud the words we shared nearly 32 years ago. I looked at me.  I think it was more an awareness that someone was crying than anything else. 


I played the following songs which all had significance to us:


"Have I Told You Lately that I love you?"
"The Wedding Song"
"Amazing Grace (my chains are gone)" - during this one he furled his brow and whimpered.  He used to love that song.
"10,000 reasons - Bless the Lord"


I cried the whole time.  I handed him his stuffed animal at one point and put his arm across it.  With one motion, he lifted it off his chest and deliberately handed it to me.  His first movement.  It was shocking.  Then, he grabbed my arm and would not let go.  It was not forceful but loving.


In the picture, it appears he is looking at me but he is looking beyond me. 


One of the caregivers came in to ask if they wanted me to bring his supper in bed.  I couldn't take much more and did not want to cry in front of her so I left.  I immediately, for the first time, walked into the managers office and broke down.  I sobbed.....and sobbed.  Even Annie the dog felt my grief and jumped in my lap to lick my nose.


I straightened myself up and stopped feeling sorry for myself.  As a headed home, I got angry.  I spent the rest of the evening sitting in front of the television in a zombie-like state.  Bed could not come too soon.


What will today bring?

Sunday, June 25, 2017

Flooding Memories

Gary is dying.  I know that.  I've known it for a long time.  Not just since the Doctor told me in February that if he lived until August, he would call it a miracle.  I knew it long before but shrouded myself in unhealthy denial.  I am not in denial anymore. 


I have visited Gary more often in the last two weeks because I sense his end is near.  Today his vitals were perfectly normal.  I walked into his room a few minutes after they put him down to nap for the afternoon.  He was so soundly asleep that I checked his chest for breathing.  For a split second, I thought he might be dead.  I felt nothing.  Yep, I have my emotions buried so deep that in the moment of thinking he was dead....I felt nothing but relief.




He does not seem to be suffering.  Most days he still eats three meals per day.  He has no emotion and if he has eyes open, he only stares through people. Most of the time he sits with eyes closed.



This disease is so unfair. 


So, with all that said, I made an offer on a townhome this week.  It was accepted and we should close in 30 days.  I am very excited that I will have my own place that does not have haunting memories of Gary in it.  The memories will mostly be of the past during good times.  I am committed to it.


Today, I started packing.  I began with the bookshelf.  Memories flooded my mind of businesses, vacations, sailing, friends, and Gary's life before me.  So many books.  So many ideas.   I am taking them all with me since the new house has extensive shelving in the library.


Heather and I opened a bottle of Asti to share.  No particular reason.  I would feel weird celebrating.  I feel weird grieving. 


Life will be strange without Gary.  Life was strange with Gary.  For those of you when knew us, that last statement was FUNNY.


Thanks to all who support me and pray for Gary.  I somehow sense that he knows he is saved and loved by many.



Sunday, June 18, 2017

Happy Father's Day Gary!

It's Father's Day weekend 2017.  Never in my wildest imagination would I have pictured visiting my husband in Memory Care Unit in his last stages of life on this weekend.  We were supposed to be playing Golf in Panama surrounded by Gary Jr., Heather and their families.  God had a different plan.





On Saturday I visited Gary.  The angel/caregivers were all busy readying the tables for the Father's Day Celebration.  The tables were covered with checkerboard cloths, the napkins were tied like neckties for the men and peanuts and pretzels were on the table!  They were served chicken wings, hot dogs, potato salad, French fries and onion rings! 


I would like to say that Gary enjoyed it but that is probably not the case.  He ate every bite but as usual he showed no emotion. 


Gary Jr. sent a Father's Day card from Pennsylvania so I read it to Gary.  Deep down, I know he wants to see his children again but for various reasons that just won't happen. Perhaps that is what he is hanging on for.....then again, maybe not.  I left the card on his pillow so perhaps the angels will read it to him again before bed.


He has some sort of eye problem.  I managed to see in his eye that was encrusted with mucus.  An eyelash seemed to be the culprit so we flushed his eyes and called the nurse to keep an eye on it.  It is amazing what things can happen when we as humans cannot take care of such small things....an eyelash....really?


Today, I will go to church and have lunch out.  I am by myself again as my family that has been visiting has started the journey back home.  It was fantastic spending time with them and I am glad they visited Gary.


Steve and Denise were a welcome sight during such a tough time.  Since I lost my Dad and Sister this year, it was nice have scheduled grief time.  There were very few tears but lots of laughs.....very therapeutic.


Steve prayed over Gary and asked for God's will and peace.  I hope it comes soon.  That is about all I can say for now....





Sunday, June 11, 2017

Weeping to Crying to Sobbing



I finally allowed myself to breakdown. The events leading up to this day have been mounting for weeks.


A friend said, "Ada, you are not leaning on your faith.  Jesus has this.  There is a wall coming at you that is very big.  You are lying to yourself if you think this death will not get to you. You are really good at lying to yourself."


I said, "You are wrong.  I've been grieving for Gary for years. I'll be fine.  I'm okay with this."


Sure Ada.  Keep telling yourself that....


So, today I went to see Gary before breakfast.  As soon as I saw him I started getting emotional.  He looked no different than he has for quite a while but my brain was remembering all those conversations and knowing my friend is correct.


As I fed him breakfast, I started talking to him.  He stared at me as he opened his mouth for each bite.  No emotion, no words, no nothing.....just chewing and swallowing.  I started to weep at first.  He looked at me and tears rolled down my cheeks.  Grief tears....they are silent and white hot on the face.


After he finished eating, I rolled him into the living room where we could be alone.  I talked to him.  I really talked to him.  I told him my fears and about my anger with his disease. I shared my love for him and that I was lying to him when I said I would be okay right away.  I told him that I miss him everyday and that I will for a long time.  I miss our talks, his advice and our jokes. 


I went from weeping to crying.  He looked at me and seemed to understand that the woman sitting with him was feeling a strong emotion.  His forehead wrinkled for a moment.  I kept myself from sobbing and dried my eyes.  I moved around in front of him and took off his sandals and rubbed his feet and legs.  He took his right leg away as it was apparently hurting or uncomfortable.  His left leg and foot took the rubbing.  He started to relax and closed his staring eyes.
He was so peaceful just a foot away from my emotional turmoil.  I knew I was about to lose all comportment so I rolled him into the big room and kissed him on the forehead.  He appeared asleep.  I thought, "Is this the last time I will see him?"  Then I realized that I should as a different question.  The better question is:  "Is this the last time I will see him alive on Earth?"  Heaven is not that far away for any of us.


I went to the parking garage and as I opened my car, I saw a box of tissues in the floor so I reached for them and the waterworks started.  It was almost as if the tissues gave me permission to take the lid off the emotions I have had screwed on so tightly.  Like an oil well, my sobs gushed forth.  Stop it Ada.......I stopped for a moment and called a friend who understands.  That voice allowed me to cry, sob and let go.  The grief tears were a welcome relief and only a small preview of what I think is still in me. I received validation that it was okay to cry. I've been through a lot of situations in the last few years so I deserve to let go.


Since 2015, I have lost 3 syblings, my Dad, my job and soon my husband.  I closed a 156 year old college and laid off 200+ employees.  I did a national job search, moved and started a new job in Southern California while simultaneously being a caregiver to Gary.  I wrecked my car and almost died just a few months ago.  I had a Cancer scare recently and will have surgery soon.  I guess I am pretty tough with God's grace and mercy pulling me through all along the way.


With that said, it was time to go to church.  Fix the make-up, touch up the mascara and put on my big girl face......done.  Church brought all the players I needed into one space.  People who care for me deeply and could see through the smile. My swollen eyes were a dead giveaway.
I will lean on them heavily in the near future, of that, I am sure.

Saturday, June 3, 2017

The Stark Contrast of the Two Garys

I arrived at Sunrise Senior Care this morning at 9:45 am.  Upon greeting me at the door, one of the caregivers told me that Gary was still in bed but awake.  They had saved his breakfast.  Apparently, he was super sleepy and they let him rest. 


He has a new roommate to whom I was promptly introduced.  He smiled and spewed forth an incredible, unintelligible sentence.  I smiled and told him it was nice to meet him.  He was watching a western on television.  Gary was awake but had his eyes tight shut.


I looked at him.  His left hand was not swollen as much as it has been in the past but the right side of his face and eye were very puffy.  I touched his face and he opened the left eye.  No visible recognition.  I put my hand on his and he grasped it firmly.  Maybe he knew it was me.  I sat next to him for a few minutes while the new roommate was talking incessantly about something.  I just smiled at him. 


Then, out of nowhere, the unit dog Annie (weighs about 5 pounds) pounced on the bed, onto Gary's chest and licked his nose.  Both eyes became wide.  No startled look nor sign that he liked it.  Just a stare.


I glanced up at the pictures on his wall and noticed the stark contrast between the old Gary and the Gary who is now a body that stares.





The angels came into bathe him and put him in his chair so I stepped out of the room.  That is not my responsibility anymore.  I waited and chatted with the angel on duty in the big living room.  Most of the other residents were sitting outside on the veranda in the shade.  It was so peaceful.


Soon, Gary came out for breakfast dressed in his backpacking Tshirt and pants!  I'm not sure why the angels picked that outfit but it somehow seemed oddly appropriate. 

I take lots of pictures now because I don't know how much longer I can. 


He ate all of his breakfast and drank two glasses of juice.  In no way is he going hungry.  I soon kissed him goodbye and left to run errands.  Every time I walk out and leave him, I think it might be the last.  I am at peace with that now. 

Sunday, May 21, 2017

Permission to live with Jesus and Further decline

As I walk into the Memory Care Unit where my husband Gary lives, I never know what to expect.  Today, he was sitting in the living room with his wheelchair buddy Nancy.  She was holding a doll with the care a mother gives her newborn.  Instinct is amazing.


Gary was sitting next to her with eyes wide but no recognition of what was happening around him.  The Unit Manager greeted me and we discussed some of my personal medical issues and then the subject turned to Gary.  She does not read this blog so I told her about the visit to the Funeral Home.  We talked about a potential roommate that might be living with Gary soon.  She gave me a bag of clothes to take home that don't fit Gary with his diapers.  I also decided to gather his bongos and an unused water bottle. Those items are no longer used due to his decline.


I sat with him and held his hand and arm for quite some time.  He was constantly whispering but I could decipher nothing.  When I looked in his eyes, he stopped whispering and stared at me.  No emotion, no hint of cognitive activity.  He would bat his eyes once in a while.  I touched his arm and told him that I know he hates living the way he is and that if he wants to go live with Jesus it would be okay with me.  There, I said it.  I told him I would be alright and that I would miss him.  I said, "You can stay as long as you like (choked up) but I will understand if you leave." 


I don't recall other than my wedding vows, speaking more important words.


After sitting quietly for a few moments, I trimmed his moustache and beard and left. 


I ran some errands and came home.  The kids were watching "Ghostbusters" so I watched for a while until a good friend called.  We chatted about random things and today, he did not ask about Gary.  Everyone assumes status quo.


Later in the evening, after a drink or two, the phone rang.  Caller ID displayed "SUNRISE".  Oh hell.....that always puts a lump in my throat.  The Unit Manager promptly started with "there is nothing wrong."  That is always comforting.  However, what they really mean is that there is no current, immediate life and death situation despite the fact that your loved one has a terminal illness.


She proceeded to tell me that they are taking Gary to a new level or personal care since he can no longer assist in transferring himself.  Despite being in a wheelchair, he has been able to stand for short periods of time to assist in moving to the wheelchair, shower, etc.  He can no longer do this so they will use a lift from now on.  Otherwise, it takes three caregivers to move him. 


Further decline.  I thanked her, hung up the phone and became overwhelmed with tears.  I cried for hours.  Sobbed, heaved and cried.  Sobbed.  Then, as quickly as it started, it stopped and I slept.  I hint of the future.


Today, I am going to church and to our University's annual Commencement Ceremony.  Some normalcy seems really good right now.

Monday, May 15, 2017

"That is the good stuff."



Most of my visits to Gary, unless very well timed are spent watching him sleep...or so he acts.....I think sometimes he is wide awake with his eyes closed.


I try to get to him at mealtime so I can feed him and he usually opens his eyes.  On Saturday, I was feeding him Broccoli soup and he whispered something.  In the past, once he says a thought, it does not get repeated.  This time I put my ear to his mouth and asked him what he said.  He quietly whispered "That is the good stuff."  That is a phrase he used for years when he liked something. Just as quickly, he slipped back to wherever he stays now in his mind. He finished all his food.  He usually does.  He is still swallowing.


Sunday was Mother's Day so I knew there would be lots of activity at "The Happy Place".  When I walked in one of the caregivers pointed me in his direction.  He was sitting in a different place than normal.  He was in the quiet room, covered in a blanket sound asleep.  (See above picture). I sat with him and held his hand for about 20 minutes and it was time for lunch.  We placed him in position at his table with Martha and Nancy. 


Martha was holding a doll while she ate her lunch.  I watched her scoop up applesauce and give the baby a bite and then took a bite herself.  The doll's mouth soon filled with applesauce.  One of the caregivers noticed and with no emotion or excitement told Martha, " Martha, the baby is full.  Let me put her in the crib and feed her a bottle.  Its time for you to eat yourself.  You are a very good mother." This act of kindness choked me though the whole situation was somewhat funny. 


Nancy was also holding a doll but is unable to feed herself so I guess her baby would go hungry that day.  Instead, she reached over and tried to pick up Gary's sandwich. I discouraged her and distracted her with the doll while I fed Gary.


I know that I loved the man who was.  My close friends think that I will "lose it" when he dies. I guess we will find out soon enough.  I hope they are all wrong.


Here is a shot of Gary when he was still clear.







Sunday, May 7, 2017

Fiberboard versus Metal Caskets....

Making Cremation arrangements should not be funny. But, it was this week. With Gary's pending death and all that I am going through, I decided it prudent to make arrangements in advance of his actual death.  So, I made an appointment at the mortuary and told the man on the phone what I wanted.


I arrived a little early to the appointment and was put in a room eerily similar to the one where we made my Dad's arrangements just a few short months ago.  While I waited, I searched around the offerings for urns, ash-art choices, etc.  I noticed their choices in that room were limited compared to what I had viewed in Virginia.


As the funeral director entered, we had an instant humorous connection and he made the process easier.  I was determined to stay light hearted and business-like rather than a weepy near-widow.  He seemed amazed.


I told him that I wanted a cremation with ashes split 5 ways.  He said that we needed to start with filling in all blanks on the death certificate form.  I knew all the information off the top of my head and we proceeded to the forms about the cremation itself.  First, the state requires the body to go to the crematorium in an appropriate box/casket. 


He pulled a list of prices for caskets ranging from $6800 down to $95.  He quickly pointed to the bottom of the page and recommended the $95 "fiberboard" box.  I must have had an unusual expression and he asked if there was a problem.  I said, "Is it ok to cremate my husband of 31 years in a cardboard box?"  He argued the fiberboard is not cardboard and that no one would see the box except for the mortuary and the crematorium.  The concept really bothered me and he picked up on the emotion and opted to show me pictures of the choices. 


I was right.  The recommended choice was similar to the many moving boxes we used over the years to move our household.  Plain, brown with no liner.  I giggled a bit as the picture was so awkward.  I asked that the next version of the casket priced at $295 looked like.  As he turned the page to show me the picture he said, " Its a brown box painted blue."  All of a sudden, the whole process was surreal and humorous. 


I switched the topic briefly to ask about the urn sitting on his desk.  He pointed out that it was a standard size.  He used that moment to twist the subject back to the brown box.  "Besides Ma'am, if you choose one of the fancier wood or metal caskets, they and the ashes don't fit in the urn here."  Really?  Ok, we will take the "fiberboard" casket.


The next portion of the form was about the location where the ashes would be stored or scattered.  I told him that part would be put in San Francisco Bay, part over Yosemite and split three ways into artwork for myself, Heather and Gary Jr.  He had one sculpture to choose from that was way too large for what I wanted.  We decided that I would find some online and send him the information as apparently, they have to split the ashes.


He then asked if Gary had any metal pieces in his body that we had to be aware of during the cremation.  I pictured the furnace encountering the metal and blowing or causing some type of injury to the workers.  I answered that he had a pin in his wrist and one in his ankle from a motorcycle accident years ago. He said, "Oh, nothing large like a rod?"  I finally asked why it was a problem. He answered that the small pins would not pose a problem.  He indicated that the large pieces of metal also don't fit in the urn and they have to sift them out at the crematorium.  Again, it was humorous as there is so much the commoner does not know about the process.


Then he asked if I would be bringing clothes to dress Gary in before the cremation.  I said, "Heck no.  Gary was an old hippie and would prefer to be naked!"  He understood and wrote "naked" in the form.


It was all done.  I walked away with a folder representing the cremation of my husband.  When he dies, Hospice can call the mortuary and they will pick him up.  I just have to pay at the time.


It is all surreal but I feel better knowing the decisions are done. 


After his death, we will have a memorial in Elk Grove and then spread the ashes in the Bay and the rest at his beloved Yosemite. 













Sunday, April 30, 2017

His time is growing short.

Gary sleeps....a lot.  I visited him yesterday morning right after breakfast.  He was sound asleep in the living area of his Memory Care Unit.  One of the angels told me that he had eaten a donut and promptly fell asleep leaving the rest of his breakfast uneaten.  That was around 8:10 am. Elvis was signing "if we never meet again this side of Heaven" and many other gospel songs.  I wondered how much I will sit and listen to him sleep in the near future. I sat with him until I had to go to the dentist at 11:30.  Other than breathing, he did not move.


Earlier in the week, our long-time friend Susan visited again from North Carolina.  These pics were taken:




Susan is so good at understanding that the communication is one way. She held his hand and talked to him about old times and things we had done together while I fed him a hot dog and potato chips.  He stared at her just like in the picture.  He was VERY awake but mostly unresponsive.  We discussed later that we are not sure what he thinks or if he is thinking.  He just stares and holds on tightly to whoever is holding his hand.


After church today I stopped by and spent some time walking him (and other residents) in the hallway of the Assisted Living Side of the facility.  It was 86 degrees outside and way too hot to walk them outside.  After a few laps, we took them to the shaded porch outside.  He slept the entire time.  I trimmed his nails and then left and went to Costco.


His time is growing short.  I feel it.  I know it. 

Tuesday, April 25, 2017

Too blessed to be stressed....

On my way to a personal medical appointment this morning, I stopped by Gary's to feed him breakfast.  He was sitting at the table with a Baseball cap on his head, sideways so we could see his face.  The cap is his famous " I'm too blessed to be stressed" cap with "Jesus" printed on the back.  How appropriate.  He does loves Jesus and would have been happy to wear it.


I sat with him and fed him Oatmeal, waffles with syrup, scrambled eggs, sausage, bacon and cranberry juice.  I also brought him a Starbuck Caramel Macchiato. He ate every bite and seemed to enjoy it.  As the meal unfolded, I started listening to the Adele CD playing in the background.  I brought that cd to them months ago.  I started to cry when I listened to the words "when we were young".  I held my face very close to Gary's and wiped a tear that ran down his face.  I think it was his eye watering and not related to emotion.  I contemplated that very soon I will no longer be able to see him, so the words were especially emotional.  I cried.


"When We Were Young

Everybody loves the things you do
From the way you talk
To the way you move
Everybody here is watching you
'Cause you feel like home
You're like a dream come true
But if by chance you're here alone
Can I have a moment
Before I go?
'Cause I've been by myself all night long
Hoping you're someone I used to know
You look like a movie
You sound like a song
My God, this reminds me
Of when we were young
Let me photograph you in this light
In case it is the last time
That we might be exactly like we were
Before we realized
We were sad of getting old
It made us restless
It was just like a movie
It was just like a song
I was so scared to face my fears
Nobody told me that you'd be here
And I swore you moved overseas
That's what you said, when you left me
You still look like a movie
You still sound like a song
My God, this reminds me
Of when we were young
Let me photograph you in this light
In case it is the last time
That we might be exactly like we were
Before we realized
We were sad of getting old
It made us restless
It was just like a movie
It was just like a song
When we were young
When we were young
When we were young
When we were young
It's hard to win me back
Everything just takes me back
To when you were there
To when you were there
And a part of me keeps holding on
Just in case it hasn't gone
I guess I still care
Do you still care?
It was just like a movie
It was just like a song
My God, this reminds me
Of when we were young
When we were young
When we were young
When we were young
When we were young
Let me photograph you in this light
In case it is the last time
That we might be exactly like we were
Before we realized
We were sad of getting old
It made us restless
Oh, I'm so mad I'm getting old
It makes me reckless
It was just like a movie
It was just like a song
When we were young "

I thought to myself that I should tell him that it is okay to "go".  I refrained.  

I left and went to my doctor's appointment.  I have my own health challenges that may prove to be another hill to overcome, but we can talk about that later.

Later in the day, the Hospice Social worker called to say she had seen Gary and agreed with the prognosis that he may have two months left.  She asked, "Ada, have you given him permission to die?"  Wow.  Hit me between the eyes.  How ironic that I had thought this just a few hours before.....

We discussed the timing and she suggested that even though he is a couple of months away that letting him know that I will be okay if he dies.....might be a good idea.  Who would ever think that loving someone could be so difficult?

She confirmed that even though I have been grieving that I am fooling myself if I think his death will not effect me.  I expressed that I think it was helpful that I watched my sister die two months ago.  How SO?  I expressed that if Gary dies a slow death, I know what to expect.  If he codes or aspirates, etc....well, that is a different story.

I went back to my second doctors appointment and considered the concept of mortality.  What a concept.  I am so thankful that Gary is saved by the blood of Christ.  It makes letting him go so much easier.


Wednesday, April 19, 2017

Further Decline

I went away for the weekend.  I went far away.  Where is not important.  I needed it.

This is a busy time of the year at the University, so I haven't spent a lot of time with Gary. Between emotion, work and grief, I am choosing not to go to him very often.  Yes, it is a choice.  A Very HARD choice.  The Saturday before I left for my trip, I went to visit Gary and do the ritual trimming, clipping, etc for him. 

On that day, he did not know me.  For some reason, that doesn't bother me anymore.  As I walked out and knew that I would not see him again for a week and a half or so, I felt reminiscent of old times.  We used to travel together and have great times.  I am so thankful for those years and that we did not wait "until we retire." 

While I was on the airplane waiting for take-off to come home, the Hospice Nurse called to inform me that Gary has had further decline and they are changing his medications and taking him off several medications that he really no longer needs.  There is no point in managing his cholesterol....

He cannot swallow the pills anymore so they are moving to an applesauce based crushed medication of his seizure meds and Prozac.  His hand is now completely atrophied and swollen about 3 times the normal size.  Apparently, this happens with FTD.  His hand is also now exuding an unpleasant odor.  So, they are giving him a brace and some medication to attempt to alleviate any discomfort.

The nurse continued to say that he is staring more-so than before and non-communicative.  I expressed that this was not new and she indicated that he is worse.  He also is extremely hunched over in his wheelchair and cannot sit up straight.

So, when I got home to Orange County from a 12 hour travel delay, I went to work and then straight to visit Gary.  He was sitting at the dinner table in the exact position the nurse had described.  One of the angels was feeding him soup.  As I took over, I noticed that he had soup all over his bib and napkin and I became irritated.  For a moment I could not understand why she was so sloppy. As I started to feed him my perspective changed. 

He was so hunched over and crooked that when one put the spoon to his mouth, it spilled due to the severe angle.  I could not refrain from spilling it either.  Gary used to say "Experience is the only REAL truth."  Lesson learned.

So, he got the rest of the bowl of soup by me merely dipping the spoon in the soup so remnants of soup stuck to the spoon.  This prevented spillage and enable him to put the spoon in this mouth.  This method took quite a while to finish the soup.  I tried to prop him up in the chair but his body would not cooperate.  How uncomfortable he must be.

I finished feeding him his dinner and took off his bib to reveal the swollen hand.  He was grasping around a washcloth they had rolled and provided to attempt to keep the hand from curling further while waiting on the brace. I gasped audibly when I saw it.   He had no reaction.  That doesn't mean that he can't hear me or that he is not comprehending what is happening.  I am careful not to talk about him in front of him as if he is not there. 

I grasped his healthy hand and moved my face down to look in his eyes.  His eyes were bloodshot and full of mucus.  I used some eyedrops to hope that he felt better.  He was pale and now strikes me as looking like an older man.  He never looked his age until now.

I kissed him and he puckered to kiss me in return.  I said, " I love you." He replied, "I love you."  It was repetition, NOT a response.

I left.  I came home and ate dinner and then went for a massage to attempt to further heal my neck injured in my recent car crash.  A friend called and we processed the pending death of my husband and how I am feeling/grieving/compartmentalizing, etc.  I have no idea how I will handle this but know I should embrace every moment as a celebration of his life and not a grieving for what was.

Sunday, April 9, 2017

"No, Shrimp!"

To the best of my recollection, since Gary moved into Memory Care in June of 2016, I have not cried one time while there.  Much less, in front of him.


During my last visit, I was particularly emotional.  When I entered the unit, one of the caregivers looked at me with a rather peculiar expression and said, "Wow, your timing is good.  Gary just had a full bowel movement and he is all clean!"  Great.  Just what I wanted to hear.  I responded, " Great, thanks."  I was on the verge of tears but kept moving. 


As I entered the Dining Room, Gary was sitting with the usual suspects, Nancy and Martee.  I said hello to everyone and kissed Gary.  He puckered.  I am convinced it was a lifelong reflex, not an acknowledgement of me.  They were about to serve the food.  I planned it that way.  I can get there at 5, feed him and get out quickly without too much interaction with the people who ask "where have you been?"


An angel asked "Would Gary rather have Taquitos or Shrimp?"  I thought about his previous desires and said, "I think he would want Taquitos." Completely out of character, he turned his head, looked at me and corrected me.  He said, "No, Shrimp."  I was flabbergasted that he expressed a desire.  The girl said, "Did he just say that?"  I responded, "Please bring him shrimp." 


While we were feeding him, I started talking to him about normal things.  I let a tear slip from my eye and when I realized it, I got very choked up and started to cry.  I looked at him and he also let a tear leave his eye.  I asked him not to cry that I couldn't handle it.  He stopped crying and went back to eating. 


Just as quickly as he snapped out of his dementia, he snapped back into it.  I fed him his meal and moved into his room for clipping of facial hair.  He seemed a little aware of me and touched me on my arm at one point.  It was a human reaction, not that of husband and wife.  It was discouraging.


So, everyday I grapple with moving on to life without him.  It gets easier and easier.  Some days its hard.  I have accepted that I will never again have a conversation with him.  I will never get advice or hear sweet nothings from him.  That part of our relationship is very dead.  I mourn yet, I am celebrating what was.  


There is hope.  



Thursday, April 6, 2017

Anger. Guilt. Pissed off. Disappointed. Hurt. Grief.

Anger.  Guilt. Pissed off.  Disappointed.  Hurt. Grief.


Those are emotions I feel right under the surface of my every action.  They are just deep enough that I can ignore them, hide them, cover for them and use every excuse in the book not to feel them.  The interesting part of that cover up is that the people who are closest to me and really care see right through it. 


Today, a very dear friend pierced the emotional veil and helped me see that I feel all those things and that I am not facing the fact that I feel them all and that my excuse of "feeling obligated" to take care of Gary is a load of crap.  I sobbed.  Finally.  The emotional purge was short but effective. Boy, it sure hurt getting to that point, but he is right.  I don't feel obligated....not really.  I don't know what I feel.


I know that I have been married to Gary for 31+ years since I was a very young 22.  I loved him that entire time and we had a magnificent life.  Adventure was always at the forefront of life.  I know that Frontemporal Dementia is a disease and he had no control over his body when it came to him showing symptoms.  He has a disease and he can't help it.  Frankly, I am so angry about it that I have manifested it into being angry with him.  That is unfair but that is how I feel.


I love the man who was.  I love a man who is no more.  He is a shell.  The man I loved and treasured is gone.  That makes me angry.


"Ada, you are about to go through a major life change."  How true.  However, I would like to point out that I have already gone through a major life change.  I don't have a husband in my home.  I no longer have the man whom I could call at any hour of the day and hear a comforting voice.  I don't have my life partner to share ideas, snuggles, laughter, torment or daily life challenges.  That makes me sad and angry.  I have no control over what happens with Gary's mind and body.  So, I wait.  I wait for it to be over.  I wait for him to not suffer.  I wait for death.  I wait for that new life. 


I make feeble attempts at starting a new life.  I've lost weight (40 more pounds to go), I bought a new car (after totaling the old one), I bought a new wardrobe, I've made new friends and I've been traveling.  What more can I do?


Its been said, "Ada, you know what you want.  You are refusing to see it."  For now, I don't know what I want....maybe it is deep inside me and I just can't see it.  I do know that I want happiness again.  I just don't know how to define happiness anymore.


Meanwhile, Gary is in Memory Care sleeping, eating, peeing, pooping, staring and living his life through caregivers.  It is a miserable existence....at least from this viewpoint.  He can't communicate so I don't know what he is thinking, if anything.  We will never know. 


So, Ada stays numb most of the time.  Its easier than dealing with the above listed emotions that lie directly beneath the surface.  One day, I will have no choice but to deal with them.


Anger.  Guilt. Pissed off.  Disappointed.  Hurt. Grief.















Sunday, April 2, 2017

Currently, I have few words....

Its been nearly a month since I posted my last blog.  Many people have inquired about my whereabouts and what I have been doing.  Frankly, I don't really know what to say these days.

I went away to Mexico for a week by myself.  The week before I went I visited Gary at his memory care unit.  I no longer call it "The Happy Place" like I did when he first moved there.  Then, we still had smiles and happiness.  That no longer exists.

That Sunday, I went to trim his fingernails and trim his beard.  I accidently cut the skin on the end of the thumb.  As it bled profusely he showed only shaking as a reflex.  No ouch, no finger in the mouth, no nothing.  He didn't even pull away.  That lack of response saddened me.  I know in my heart that he did not know me that day nor care.

I stayed a short while and took off to pursue adventure on my first vacation alone.  The last time I was in Cancun, Gary was with me and even then, starting to show signs of FTD.  Many of his misspoken feelings, inappropriate interactions and forgetfulness were apparent then.  As I visited different parts of the resort and Cancun, those unpleasant memories that I thought were so deeply buried returned to my memory.  It is so sad and such a shame that such a brilliant light and mind is being extinguished by this horrible disease. 

I met several couples with whom I had dinner and talked with by the pool.  The typical question was "Where is your husband?"  Then I would give a brief synopsis.  Some cared, others could not relate.  I felt no guilt for being there and relished in the praise I received and gave myself for starting to live again.

When I returned to the Memory Unit last Sunday, I held his hand and for a faint moment he recognized that he knew me.  I doubt if he knew I am his wife. I could not emotionally stay very long...maybe 20 minutes.  I had to move on about my day as I was leaving Monday for a conference in Sacramento.

I celebrated my 54th birthday with old friends from Rancho Cordova where Gary and I lived for 8 years prior to moving to Anaheim in 2015.  It was wonderful to feel that kind of love.

On Wednesday morning, I totaled my BMW X3.  Some items from my front seat flew into the floorboard when I was spooked by a shadow, animal or something.  I attempted to retrieve the items from the floorboard and took my eyes off the road.  I hit the curb, over steered and knocked out an Anaheim lamp post head on into the cement.  A 40 pound lamp fell off the pole and crashed through my sunroof missing me by inches.  I walked away with only some bruises and scratches.  God is always Good but he was extra vigilant that day.


After realizing I was okay, I asked for my phone.  I wanted so desperately to talk to Gary.  In the old days, he would have been by guiding light, rescuer and comforter.  Instead, I called his daughter Heather and she rushed to my side. Her caretaking skills and love for me were exceptional.  I will never be able to express to her how much that meant in those crisis minutes.

God's grace continues to cover me with protection.

On Saturday night, I joined a friend at an acoustic Vince Gill concert.  I knew he would sing "Go Rest High on that Mountain" which is a mournful, beautiful tribute to a dead loved one.  I did not make it through the song without grief tears streaming down my face.  Tears for my Dad and Sister who died last month and for the death to come of my husband. 

After church today, I visited Gary.  He was particularly out of it and leaning over in his chair like he often does now.  I tried to comb his disheveled hair to no avail.  He would not look at me nor acknowledge my presence.  He stares at the wall. 


 
His hand is swollen again.  A recent x-ray showed no fracture nor broken bone.  I requested the doctor to examine it again as it looks painful even though he shows no reaction when its manipulated. 

I looked at him sitting in that chair and staring out into space.  It did not break my heart any further than it has already.  I felt a different sense of "alone".  He is just not there anymore. He is alone in his shell of a body and I am alone in our marriage.

A good friend asked, "Why do you still go if he is so gone?  Its so hard on you, Ada."  My answer now to that question is:  "I feel obligated."  That is a horrible place to be but it is true.

We do not know when Gary will die.  It won't be long, we know that fact.  I hope his trip to Heaven will be easy for him because he will be leav ing the FTD hell here on Earth.  God bless him.