Friday, March 10, 2017

Tears in the Night

On my last visit to see Gary, the Care Manager told me that he was found in the middle of the night crying profusely.  This is highly unusual in that he has shown literally no emotion for months. 

The caregivers checked his diaper, inquired about pain and could find no physical reason for the tears.  Since he cannot communicate, they simply pulled up two chairs and sat with him and held his hand.  How sweet.  How sad.

The impression that I receive from this event is that Gary is still "in there" and feeling something.  Was it loneliness?  Was it pity for himself?  Was he scared?  Was he aware of his terminal situation?  Was he angry?  We will never know.

For all blog readers, it is apparent that I have had a shift in how I am approaching dealing with Gary's situation.  I have stepped away from visiting daily and spending great amounts of time at the Memory Care Center.  I was under the impression that I am grieving-as-I-go and dealing very well with the situation.  I have stated on many occasions that I feel numb. 

In one day this week, three different sources who care deeply for me shared that they feel I am NOT dealing honestly with my situation and that I am about to hit a brick wall because I do not have control and that I falsely think I do.

Since three people said the same thing, it made me listen.  I do know that my husband is terminal and that chances are excellent within a few months, I will be a widow.  I get it....I just don't know what the proper way to deal with it looks like. 

At lunch today, I was watching a family assisting their elderly father to their car.  It was all three people could do to move this man without injury them or him. It brought back memories of doing the same with Gary and pretending that life could be normal.  Life was not normal and I am grateful that I put him in  24 hour care when I did.  I am convinced it extended his life span.  I feel so sorry for caregivers who do not have the resources I have.  Thank you, Lord.

Today, while driving, the social worker from Hospice called to check on me.  The conversation included a recap of both my father and sister dying in the last month; telling her that I am going to Mexico for a week by myself; Discussing pre-death cremation arrangements;  celebration of life plans and the anticipated amount of time Gary will live.  I told her that I don't think he is going to die while I am gone unless something like choking or a heart attack occurs.  I assured her that I will have cell service and will respond 24/7 if they call.

When I think back on the reality of the conversation, I realized how heavy it was and how unfair it was for me to have had this conversation in front of someone else who was riding with me.  I can handle the denseness of the situation but not everyone else can.

Truth is....CAN I handle the situation?  While I was typing this blog, the Memory Care number came up on my phone.  Anytime I see "SUNRISE" on my caller I.D., my heart skips a beat.  Is this "the call"?  No, they simply need to tell me he needs more shampoo, body wash, toothpaste and dental floss.  Whew!  The reality of that heart beat skip was a small wake up call for me.  I DO still feel fear.  I DO still feel anticipation and anger.  I'm still here, too and I am in self-preservation mode. I DO still care.





Wednesday, March 1, 2017

Scheduling Grief

"Hi honey, I've been gone for a while.  Did you miss me?" 

After being gone for two weeks to attend to two deaths in my home state of Virginia, it was weird walking into Gary's memory center and asking this question.  He had no reaction.  He never missed me.

My father and sister died during my trip to the East Coast.  I have to admit that I did not check on Gary the entire time because I knew the Angels were taking care of him in Memory Care and that if something went wrong, they would call me.

I quietly told Gary that my father and sister had died and that was the reason for my absence.  No reaction.  I firmly understand that he did not know me.  I had no reaction either.

So, I clipped his finger nails, trimmed his beard and moustache, as I know the old Gary would expect that....and I left.  I was there for all of 20 minutes.  How cold it felt to walk out of there after being gone for two weeks.  However, at this point, I am numb and trying desperately to feel.  I had no reaction to the deaths of my family members.  The last few years of this Dementia hell have left me grasping to feel....anything.  However, the protection wall is up and I am not allowing anything in right now. 

I am going on vacation to Mexico in late March....perhaps I will feel something then.  In fact, I have scheduled my grief for then.

Sunday, February 12, 2017

Gone is the mischief....



Its been quite a few days since I have seen Gary awake.  He is medicated and every time I go to see him he is either sleeping in his chair or napping in bed.  Apparently his seizures have stopped and he is peeing normally again.  I don't stay very long as I don't see the point.


There is not much to report.  Gone is the mischief he could create.  Gone is the  loving and tender conversation.  He is still somewhere in that broken body but the personality is not there.  He is dying a very slow death.


Meanwhile, my Dad is also in intensive care in a hospital in Virginia and has refused the doctor recommended treatment.  His days are numbered. 


I was thrilled when 2015 was over as it was such a horrible year.  2016 was incredibly taxing.  2017 seems to be shaping up to have several incredible adventures.  Only time will tell.





Thursday, February 9, 2017

"What is Gary's life expectancy?"

"What is Gary's life expectancy?"  After a week of visiting with Attorney's and VA experts, I found myself asking this question of the Hospice Team.  I had to know for lots of reasons.

Currently, I am averaging around $7400 per month for Gary's care at the Memory Care Unit.  Since June 30 of last year, that is greatly depleting our savings.  One attorney referenced this outlay of cash as "hemorrhaging".  Despite the fact that Gary is getting the best care I can find, it still comes to the fact that I will run out of money if he lives more than a year.  

It is a bitter pill to swallow that he is suffering from Frontotemporal Degeneration and will die.  It is a worse pill to swallow to know that it is SO expensive to keep him comfortable and dry.  One attorney said "You have him at the Ritz...perhaps you should move him to the Hampton Inn?"

So, I found myself face to face with his Hospice Doctor, Hospice Nurse, the Center Case Manager and others from the Memory Unit.  Do I move him out of the area to a less expensive place so the money lasts longer?  Divorce is not an option.  What to do?

So, I very bluntly asked the doctor how long he thinks Gary will live.  He boldly looked at me and stated that he wished more family members would have the bravery to ask.  I stayed in business mode and proceeded with the questioning.

To make a very long, agony-filled story short, the answer was "Ada, he has 4 to 6 months left.  I would be shocked if he is alive on August 1."  The doctor indicated that Gary's brain is deteriorating faster than his body and possibly he might die from aspirating, a stroke or something else.

There it was.

I explained the financial concerns.  I asked about moving him to a less expensive facility.  We talked openly about what is keeping him stimulated and doing as well as he is.  The team felt that moving him would be detrimental and would speed his decline.  They even felt that moving him to another room in the same facility would be negative.  So, I decided to leave him where he is and continue to pay the current amount for the remainder of what is now, a very short life.

I spent the evening thinking.  Today, I called the local funeral home to begin making arrangements now so that I don't have to do things in a hurry later.  We will have a celebration of life when the time comes, not a funeral.  He always said that he wanted part of his ashes scattered over our beloved Yosemite and the rest in San Francisco Bay where we sailed for countless hours.  I will observe his wishes.

It is so numbing to think that all this is really happening.  No one can empathize unless they have lived it.  Meanwhile, I go on each day performing the duties of my job and enjoying the blessings God has bestowed on me and my family. 


Wednesday, February 8, 2017

 
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Please consider giving to fight FTD. My goal is to raise $5000!
 
 
 
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Sunday, February 5, 2017

Gary's Roller Coaster Life

This week has been a physical roller coaster for Gary.  One evening he did not know me.  One evening he knew me but I am convinced he didn't know our relationship.  Then, on another occasion, he said my nickname "Ada Potata" out of the clear blue.


He has started seizing/tremoring again, not just at night but also during the day.  The Hospice Doctor has decided to triple his medication.  He has stopped the tremors but it has been reported that despite pushing significant liquids, he is awaking in the morning with dry diapers.  He seems to have normal bodily functions during the day so we are not sure if he is holding it and maybe has some awareness.  He cannot communicate so we will not know.  All angels/caregivers are aware and staying alert to any signals.


Meanwhile, I am doing fine.  In fact, better than I have been in years.  Despite Gary's condition, I am able to focus, started a Doctor Prescribed Diet and feel great.  Some may find it hard to accept that I am moving on with my life while Gary is alive.  He is being well-cared for and is safe.  For now, that is all I can do for him.



Saturday, January 28, 2017

Purging his wardrobe

I have not visited Gary much lately.  Our dear friend Shirley came down from Portland last weekend to visit us and we went to see him three times.  She was moved by the experience as evidenced by her tears and subsequent conversations.


It is difficult seeing the transition from what was a brilliant mind to that mind of today. 


In my last post, I announced (in essence) that I was taking back what control of my life that I can and that I am thinking differently and making decisions for me.  I have done that since I committed to it.


Through the help of special friends, I am getting my energy back.  I am separating from the negative emotions I have been feeling for a period of time for which I can no longer track to the beginning. 


I stopped by to see Gary briefly today.  He stared at me.  He seemed to know me but had no reaction.  I hurried out of there as this morning I started a project at home.


This morning, I began purging and bagging all of Gary's clothes.  I boxed his dress shoes and casual shoes in separate boxes.  I used Hefty flex bags to hold all the shirts, pants, swimsuits,  khakis, hiking clothes, etc.  It was 12 bags full.  I will give them to charity.  He will never need them.


I did not finish.  I still have his dress clothes, neckties, t-shirt collection, coats, jackets and shorts. I just could not do anymore today.  I will do it soon.


Upon finishing, there was a catharsis that existed.  It was magical.  I have let go.  I can't tell you how exciting it is.


I will always love Gary.  I hate Frontotemporal Degeneration.


I am surviving and starting to get happy.

Sunday, January 15, 2017

"Bloggers Want To Know..."

What a fantastic week....for me, at least.  Life at the University is full of excitement and advancement every month but January seems to be particularly fulfilling.  Especially when my initiatives are working and my teams are on top of their game.


Many nights, while driving home or to see Gary, I often reminisce of days when I would call Gary on my way home from wherever I was and share my day.  He would listen, ask questions, provide insight and share in my professional growth.  Those days are gone.  I don't even sit and talk with him hoping for a glimmer of that side of him....there is no point. Don't feel sorry for me when you read that.  I am over the period of feeling sorry for myself.  It just is....I have no emotion tied to those memories anymore. 


On Friday, an old friend came to visit.  She has seen Gary since he moved into Memory Care so I felt comfortable that her shock in seeing him now would not be so great. We spent Friday evening with her listening to my current thinking about my life, what the future holds and a particular troubling dilemma I have that will not be discussed here other than to say that I am in a very different space about my life, my future.  It is a good place.


During that conversation, she asked me for an update on Gary's condition.  For avid blog readers, apparently I left out a significant update on his ability to stand anymore...or not stand.  He went through one day two weeks ago where he was no longer able to stand and needed to be moved by a mechanical lift.  Even our daughter Heather asked me on Saturday morning about his condition by saying "Bloggers want to know!"  To all readers, I apologize for leaving you hanging.


That period of decline was temporary and lasted less than  12 hours.  I called the next morning and asked about his condition and was told he was back to "normal".  Not normal as we know it, but normal that he could stand long enough to have his diaper changed while using a walker as support.


Susan and I spent about a half hour on Saturday with Gary and he never opened his eyes though he was awake.  He held her hand and repeated some phrases quietly.  I was not expecting much response but we left to go on a day of adventure in Southern California.  We toured the Queen Mary and ended our day eating outside and dancing to a swing band at Downtown Disney. 


For the past few years, when I could get away and do things, I always found myself full of guilt or having yearnings for having Gary with me or wondering "Wouldn't Gary love this activity?"  Due to some new thinking, yesterday contained none of that.  I was able to have fun and enjoy myself as a human.


Three times this month old and trusted friends talked sense into me and assisted me to change focus.  I never realized how desperately I need to kick the "woe is me" mantra and move on.


I love Gary with all my heart and will take care of him always.  He is my husband.  I just do not need to live as if the world is ending.  Our world together as we knew it has ended, but not the whole world.  The Lord has a plan for me to do BIG things.  I intend to listen closely and fulfill those plans.  Prayers are appreciated as I embark on new adventures!  I am receiving some much needed spiritual guidance so everyone relax.  I will not do anything stupid.











Thursday, January 12, 2017

A Partial Widow at 53

How can one be a "partial widow"?  A dear friend recently used this label for me after I was expressing discontent with not having a normal, healthy husband of 31 years at my side.  I was feeling sorry for myself and wondering what life holds for my future. 

She has said this to me a couple of times and she is exactly right.  I seem to live in this surreal life where I work an Executive Job, have fantastic job satisfaction and yet most nights, I stop by the Memory Care Unit where my husband lives and then I go home.  My step daughter and grandson live with me but for the most part, we live separate lives. My husband is not there, physically or mentally.  Thus the "partial widow" comment.  I grieve for him almost everyday.  At least I grieve for the man that was.  His body is still there and visible when I visit but for the most part, he is a stranger.

It has been said many times, "Ada, I don't know how you do it."  This expression comes from people who have never lived a life with a mentally disabled, terminal spouse.  I just keep going everyday and try to find peace in the fact that I am a married woman with no normal marriage.  I am a normal female who wants a partner that can meet me half way. I sometimes get bitter. I sometimes get angry.  But for the most part, it is incredibly lonely in every way... and all that implies.

Perhaps some day I will have life #2.  I, in no way, am anxious for the next step that will occur in this married life. So for now......I will just continue to take one step at a time and know that God is in control and has a plan.  Please continue to pray for Gary to have no pain or discomfort. 

Saturday, January 7, 2017

"I'm Not Gonna Miss You"

The Hospice Nurse called me last night to tell me that Gary's X-ray came back showing no injuries.  No broken bones.  So, he has been getting Tylenol as needed.  His wrist has been swollen and pained for a couple of weeks.


Today, I reached the "Happy Place" around 10:45 and his hand looked almost normal.  He was sitting in his wheelchair among the other residents listening to the Activity Director and mostly snoozing.  I said hello but did not pull up a chair next to him because I would have blocked another resident, Nancy's view.  I really don't think she knew anything going on and she probably wouldn't have known that I was blocking her view but she is an old lady so I have to be nice.


I felt like a fish out of water because I didn't really want to sit down with the residents so I checked on Gary's room, sorted the clothes in his closet, and plugged in his beard trimmer.  I went back to the living area and sat down directly across from Gary about 5 feet away and listened to the stories being shared in the room.


Around 11:45, he suddenly woke up, sat up straighter and looked right at me.  I said, "Well, there you are!  Hi babes!"
As usual, he had no visible reaction.  There is no emotion to be found on his face anymore.  Here is the look of FTD.
I fed him lunch.  When I first entered the unit this morning, one of the angels stopped me and asked me to bring in a thermos cup with a lid so Gary can pick up his own hot beverage.  She says that he tries to pick up the coffee cup and is able to drink, but has coordination issues with sitting it back down and spills the liquid.  They tell him that this is okay but she detects that this embarrasses him and then he doesn't try again.  She senses that the cup would help him be more independent. 


He seemed troubled today.  I don't know why he would be other than the fact that maybe today he is more aware of his situation. 


I wheeled him into his room for a beard trim.  Afterward, I played some songs on my telephone.  He showed no reaction.  I held his hand and rubbed his arms.  I played Glen Campbell's song about Dementia "I'm Not Gonna Miss You".  He seemed to listen. It made me sad.  Please find the lyrics below:


"I'm still here, but yet I'm gone
I don't play guitar or sing my songs
They never defined who I am
The man that loves you 'til the end

You're the last person I will love
You're the last face I will recall
And best of all, I'm not gonna miss you
Not gonna miss you

I'm never gonna hold you like I did
Or say I love you to the kids
You're never gonna see it in my eyes
It's not gonna hurt me when you cry

I'm never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains

I'm not gonna miss you
I'm not gonna miss you"



Written by Glen Campbell, Julian Raymond • Copyright © Warner/Chappell Music, Inc

I heard the other residents exercising in the other room, so we went there and I attempted to get Gary to move to the commands.  Nothing.  So, we sat there.  I held his hand until he fell asleep. 

As I was sitting there watching him sleep, three of the residents began a conversation.  The room is very open and there is no privacy. One of them was the others about her mother having Dementia.  She explained how her father had taken care of her mother for years and how difficult it was on him.  She expressed that she hoped she never got Dementia because she did not want to be a burden on her family.  All three of the other ladies also lamented that they, too wished that they never get it.  None of them know that they are in a Memory Unit because of Dementia or Cognitive issues.  Listening to the conversation was rather surreal.

Then, they started discussing the need for individual phones in their rooms so they can call their loved ones.  The devised a plan to go to the office and have a conversation with the manager demanding that phones be installed in all their rooms for a $5 per month fee.  They said that when they "check out" and go home that the fee could be transferred to another resident.  I was quite impressed with their plan.  Then, the phone on the unit rang and one of them said, "Perhaps we should answer it." Another one said, "Oh no.  They have a whole bank of operators in the back room that handles all the calls and they will come get us if its for us."  Absolutely all of this was fabricated in their minds.  However, they all agreed that this information was the truth and they started talking about the weather. 

I am always amazed at how God enables these folks to not suffer but instead to carry on as if they were spending the afternoon at a country club.  It was beautiful.

Normally, Gary takes a nap and has a routine changing at 2:30.  His caregiver came to move him into his room and so, I left.  He always needs two people to assist him.

Wal-Mart was the most logical stop for purchasing the cup and some Dixie cups for his dispenser.  On the way back home, I stopped by Gary's to drop off the cup.  He was sitting out in the hallway wide awake.  Something was wrong.  The Care Manager came over and explained that for the first time, Gary was unable to help them by standing to move him from the chair to the bed.  Apparently, for six months, he has been able to stand long enough for them to safely change him and get him to his nap.  Not today.

So, they were retrieving a machine from the Assisted Living Unit that would safely move him to the bed.  They were reallocating it to his room when I left again.  Wow.  Reality.  He could be back to his "normal-not-so-normal" self tomorrow or he could now be totally reliant on people moving him.  Dead weight.  Only the Lord knows what tomorrow brings.

The hardest part of having a spouse with Frontotemporal Dementia is well, everything.  I can't heal his disease.  I can't live normally without guilt.  God is in control and the spouse had no insight.  Each phase of this horrible disease is unbelievable. 

Wednesday, January 4, 2017

Missing his touch...

Visiting Gary tonight was very special.  I had a fabulously successful day at work and was feeling very good leaving work.  Traffic was heavy but I got to Gary's Memory Unit quickly and found him sitting in the living area.  He kissed me hello and I said hello to all the residents who responded to me. 

The angels were dealing with all the residents' individuals needs and deciding on a movie.  Gary was particularly awake and confirmed what the care manager told me when I came in.  The swelling has decreased in his hand but he is articulating that he has pain.  We gave him a pain pill and requested an xray tomorrow.

Meanwhile, I noticed when I bent over to fix his shoe that he started patting my back.  I stayed in a bent over position to see if it was a fluke.  He continued to caress my back and pat me.  It was as if he was aware that I have feelings.  I sat up and he moved his caressing to my hair.  He felt the back and then moved his hand to the side of my head and stroked my hair.  He said, "Your hair is soft."  I almost cried.  This is more aware and present than he has been in many months. 

I told him that I love him and he replied, "I love you, too."  I said, "I'm glad you love me.  It's easier that way."  He sort of smiled and said, "Yes, its easier."  Despite the fact that he was repeating words he was hearing on the movie in the background, these were original words and thoughts.  Thank you, Lord!

He went back to stroking my hair and arm.  I started talking to him as I would have years ago.  I told him about my day and that it was successful.  After a few minutes, he stopped repeating my words and went back to repeating the words on the movie in the background. 

Over the weekend, I had tried to get him to watch the screen when the sailboats were on, but he would not.  I thought that tonight, he might watch.  I moved him over to a clear view of the screen and moved his chin to where he could see the actor John Candy waterskiing on the screen.  He started watching it.  His eyes stayed fixed for about 5 minutes of the movie.

I told him goodbye and left.  He kissed me goodbye and said that he loves me.  Wow.  I could not have asked for a greater surprise. 

It is amazing that these few moments of recognition are so valuable.  I hadn't realized how much I missed his touch.  It was if I was starved.  I can only imagine how he must feel during times of clarity.  He must miss us terribly.....I surely do.

Monday, January 2, 2017

"Don't Leave Yet!"

Happy New Year 2017!


After returning from a short family vacation to LEGOLAND and the Safari Park, I went to visit Gary today.  I took along a nutritional supplement, MSM with me.  He ran out a few months ago and the prescription provider could not get it.  We tried a few months without it and I'm convinced part of his issue with his hand is arthritis/joint related.  So, I will buy the product and take it in. 


He was sitting in the Living Room of the Unit with his eyes tight shut.  He was obviously asleep and the angels reported that he did not even wake up when the therapy dogs came to visit. I kissed him on the cheek.  No reaction.


It was time for the ambulatory residents to go for a walk upstairs in the Assisted Living Floor.  We were asked to go so I pushed Gary in his chair and we made three laps.  He was semi awake but it was more visiting time with three of the ladies.  We took Annie the dog along and all seemed to need to get out of the memory care unit.


As we arrived in the living area, Gary abruptly awoke.  I kissed him and said "Happy New Year".  He replied and puckered for a kiss. It was time for lunch so I sat next to him at the table and started to feed him.  He picked up his glass and drank his juice out of a straw.  He needed a little help sitting it down, but seemed very aware today.  Even stranger was the fact that Nancy, 96 years old/non-verbal and always needs help feeding was feeding herself.  She picked up her spoon and put three mouthfuls of peas into her mouth and chewed.  I acted as if I was not watching so that if she had a moment of clarity, she would not be embarrassed or stop.  She then sat back in her chair and refused to eat anymore at that sitting.  She was trying desperately to put words together and was adamant about something related to the brown pureed stuff on her plate.  We giggled together and then my attention turned back to Gary. 


After lunch, we moved to his bedroom to do some trimming and snipping of moustache and fingernails.  He chatted and made words but really, nothing made sense at that point.


We moved back to the living area and left to go to the drug store for more combs, shampoo, Body wash and assundries.  When I returned, there was a travel documentary on about sailing around the continent of the United States. 


Gary loved the sport of sailing so much that he wanted us to go sailing full time.  In fact, we spent many years preparing even though we will never go.  I  tried to show him the screen and show him the sailboats on the screen.  He would not look at the television but repeated every nautical term he heard.  The entire time, I was holding his hand, stroking his arm, scratching his head and rubbing his legs.  I put my head on his shoulder for a few minutes and relished in the closeness that I so desperately miss.  He kissed my head and kept repeating what he was hearing on the cruise-show.


I knew that I had to leave and told him that I had to go back to work tomorrow and that I would be by tomorrow night.  He grabbed my hand hard and would not let go.  He said, "Baberoon, don't leave yet."  It does not get any more personal or present than that.  Not only did he call me by a loving nickname, but he stated what he wanted. 


I sat back down and stayed another half hour.  We just sat together and held hands.  He would look over at me with that blank FTD stare but I knew by the hand squeezes that he was there.


When I did get up again to leave, he let go of my hand.  I told him that I would be back tomorrow night and he said, "Tomorrow night.  I love you."


Even a manicure, pedicure and a dinner later, I have very little feelings.  I started my diet again today...for real this time.  I am supposed to start the book today.  I have writer's block.  I am not sure where to start.  What would Gary want me to say?  I'm sure the words will come.






Friday, December 30, 2016

"Hurtin for Certain"

The end of another year lends me to think more about the future of our lives and what will happen to my dear husband who suffers (or not) with FTD.

Due to a string of unusual events, a fabulous concert and going back to work, I missed seeing Gary for a couple of days.  After 31 years of marriage, that seems an eternity. 

My last visit was pretty normal.  Annie the dog greeted me with licks to the face and the excitement of a happy puppy.  All the residents feel it when she is excited and perk a bit. 

Gary had just started with dinner and I approached him and his feeding angel from behind.  He is always in a wheelchair now and I noticed that he was leaning heavily to the right and was propped with a pillow.  Reena, the angel, who knows Gary very well said that he had started this a couple of hours ago and they just could not get him to sit straight.  I took over feeding him and noticed that he was wide awake, aware that I was there and eating normally.  Since he was sitting at such an angle, I found that I spilled more soup on him than I was getting in his mouth.  It was easier to feed him the solid food. 

After dinner was cleared, I held his hand and stroked his face and head.  He always likes this.  I rubbed his arms and legs and he responded with holding my hand, tugging constantly at my sleeve and rubbing my knee.  I told him that my sleeve would not come down to my wrist as it was a 3/4 sleeve blouse.  He repeated, "3/4 sleeve.  Sorry."  As the evening progressed he quietly said, in an original thought, "Hurtin for certain.  Hurtin for certain."  He used to say that when he would be in pain or recovering from a hangover.  I asked him in varying ways what was hurting.  "Is it your hand (still swollen)?  Is it your hip?  Is it your back? Honey, try to tell me what hurts."  No response.

He stopped saying it but I reported his verbal utterance so they can address it with the Hospice Nurse in the morning.  He needs a PRN pain medication available in case he has pain. 

I sat with him for a while longer.  He played with any piece of clothing that had a fold, a crease or a wrinkle.  He seemed to be mesmerized by touching the cloth.  He was not touching me, just the cloth.  Then, he switched to squeezing my arm, leg and knee again.  I told him I loved him and he repeated exactly what I said....I don't know if he was expressing that he loves me or repeating what he heard.  Either way, I will accept it and appreciate it.

I kissed him goodbye and told him I would be back tomorrow.  He acknowledged and kissed me goodbye in return.  I felt empty as I walked away. 

The hard part of FTD is that they cannot express themselves.  I don't know what he is thinking or feeling.  He does not seem to be frustrated or happy or content or well, anything.  He just is.  I know he would want the best for me and for me to be happy.  I want for him the same......

Saturday, December 24, 2016

The Miracle of Christmas!

Merry Christmas Eve!


I woke up feeling sorry for myself.  Home alone except for my beloved Beagle Diva Gerl.  She rolled over and let me scratch her belly and ears before needing to go out.  She never lets me down.


Don't get me wrong.  I had choices this holiday season.  I could have flown to Virginia to be with family or gone to the Central Valley with my step daughter Heather and her extended family.  However, I have been married to Gary for 31 years and we have never spent a Christmas apart and I don't want to start now.  So, I chose to stay home and visit him on Christmas Eve and Christmas Day.


On the way to his "Happy Place", I stopped and bought Gary one of his favorite drinks.  A Caramel Frappacino. 
He loved it. For over an hour, he sipped, slurped and gulped.  I was happy that I could give him something different than his daily routine.

While he was enjoying his coffee, some of the other residents were sitting in a circle playing flyswatter balloons.  They were laughing, giggling and having the best Christmas eve!  When they finished with flyswatters, they switched to "Noodles", like children use in a swimming pool.  One of the caregiver/angels stood in the middle of the circle and dueled with each of them.  The differences in their beating approach was as different as their personalities.  "The Mayor" who used to work for J. Edgar Hoover had clearly had some sword training.  Even his stance in the wheelchair included advance maneuvers to take out his opponent.

Karl was obsessed with hitting her as much as he could and wearing her down.  The angel giggled the whole time.  What an amazing activity.  It was more like pre-school than memory care.  Even though Gary cannot participate, just having the laughter in the room is therapeutic.

Soon after, the head "angel" handed out donuts.  Gary chose a half iced, maple donut.  He ate it in between drinking his drink.  As all enjoyed their respective Christmas treats, the mail arrived.  Some of the residents had Christmas cards to open and enjoy.  Then Victoria, the head angel, read aloud Christmas stories.  What a pleasant morning. 

I realized that this is my home now even though I do not sleep here.  This is my new family.  I love all of them.  I watched at lunch as one of the ladies leaned over to what she thinks is her long time lover/friend/husband.  She looked at him full of love and touched his arm.  He looked at her and saw a stranger.  She said to him, " We went to school together and have five children."   The look on her face was tortured that he was not responding.  The moments before the reaction were painful.  Now, keep in mind, they have known each other only since they moved in to memory care.  THey both have children and grandchildren and histories that do not include each other.  The miracle of Dementia took over and gave him the proper words...." Oh yes, I remember now.  I love you, too."

I took a deep breath as her smiled covered her face.  She looked at him longingly as I find myself looking at the man who is now Gary.

Immediately following this heartfelt situation, they served Gary his soup. As usual, I started feeding him.  One of the angels, Becky was sitting at the table feeding Nancy.  We were chatting and I lost focus on feeding Gary.  I realized that he had scooped up some lentil soup and was slowly, carefully putting it to his mouth.  I stopped myself from interfering and said quietly, "Becky look!"  As the soup went into his mouth without a drop being spilled, I started crying.  It was so beautiful.  She also realized how moved I was and could only respond with a "wow".  The rest of the meal, he held his own water glass and picked up his cornbread on his own.

Yes, to the common reader, "So what?"  To those who follow FTD and its effects on the body and mind, this is amazing.

He ate barbequed chicken, vegetables, sweet potatoes (with his hands) and apple pie.  He was almost defiant.  He ate by himself. 



I was hungry and knew that he would be going to sleep soon so I went to the local Chilis and had chicken wings.  I went home to check on Diva and had a magnificent nap.  4:00 found me back with Gary.  Hermione, one of the angels, met me at the door wearing an elf costume,Mickey Mouse ears and a huge smile.  What magical people have been assigned to take care of my husband.

She said, "Ada, the room smells really bad.  We just cleaned him up from a bad episode of diarrhea.  We called Hospice regarding his issues. " I laughed and said that his problem was not sickness but Frappancino, lunch, donuts and apple pie.  She laughed and agreed. 

He was still in his room sleeping and I moved a chair close to him and put my feet up on the bed and waited for either him to awaken or for an angel to come and get him ready for dinner.
He quietly grabbed my foot and held on tight.  His brow was furled and I asked him to unfurl his brow and stroked his forehead.  He relaxed and went to sleep while holding my foot.  We sat there for about half an hour and I realized the importance of quiet time.  I loved this precious moment.


Finally, one of the angels came to change him and put him in his chair.  Facility rules say that I cannot help.  How odd.  Married 31 years and I have to leave the room.  I guess this is good because I do not need to witness the feebleness that is my husband.  He never gets to leave the body that is riddled with Dementia.  I get to walk away and sit in the hall.....how weird is the fairness of life?


We had dinner and I fed him.  There was no sign of the independent guy from lunch time who was feeding himself.  He ate and we cleaned up.  I left to go home and enjoy my private Christmas time alone.  I wrote this blog, ate a steak and lobster dinner and had "Home Alone in New York" on in the background.  The bourbon and coke is a nice companion.


Merry Christmas to all those in blog land who follow the times of Gary and Ada.  Your support is appreciated.  Please share this blog with anyone who may be dealing with Dementia, FTD, Alzheimers or any other brain injury.  You may not know it, but knowing that you are not alone in this hell of a disease may save a soul.



God Bless us Everyone.


I just started watching "Its a Wonderful Life". 
 








Tuesday, December 20, 2016

No One Said "Life is Fair...."

I received a text from my sister in law tonight telling me that her brother, Uncle Jimmy, died tonight.  I met the man twice, once when I was about 10 years old at my brother Mike's wedding. Then again, I met Jimmy at Mike's funeral two years ago.  Jimmy made such an impression on me.  I have never talked to him again.  He died of ALS today.  

I called my sister and law and had a great conversation about losing loved ones.  She reads this blog and knows my feelings about Gary and having him alive but separated from our marriage by the horrible disease of Fronto Temporal Degeneration.  I am conflicted.  She lost my brother to  heart failure.  There was no time to plan.  No time to see what life might be like without him.  It is unfair. 

I have the opposite.  I watch Gary die a little every day.  It is also unfair.  No one said "life is fair...." There is no solution for mortality. 

I received a call today on my cell phone. The caller of the Memory Care facility was calling to tell me that Gary has two problems.  His left hand is swollen again and he has a rash on his waist and face.  I contribute the rash to dry skin on his waist...it is a common dryness for him in winter.  The face?  NO clue.

After the hospice nurse, care manager and and wife examined the problem area....it was decided that he has sensitive skin and they need to only use the products I provided.  His skin can not handle fragrance.  We will default to only those products and if the problem continues....I will provide fragrance free laundry detergent. 

Gary seems oblivious to the problems.  His left hand is swollen again and he favors it.  I took it into my hand...he cannot straighten his hand...... I am thinking his brain is taking over his muscles....I don't know.  It is not fair.

As I sat there with him tonight, I saw one of the residents sitting at the table in her wheelchair.  It is hot pink and very stylish.  Someone had put on the brakes so when she tried to back up and move her chair with her feet....we had a problem.  She pushed back and the chair pulled backward and the two front wheels came up in the air.....in slow motion, I ran to her and tipped the chair back to four wheels instead of two.  Had I not stopped her, she would have fallen over backward and hit her head or injured her neck.  Whew.....God gives us angels when we need them.  This time, I was the angel.

I couldn't take anymore.  I left and thought about Jimmy's death, the death of my brother, the illness of my Dad and sister and the miracle of the Season.  I am so small in this world of miracles.

No one said "life is fair", but I am ready for the next step and what God has in store for us. 

Friday, December 16, 2016

What does the future hold for me?

Its 10 days from Christmas.  I went to visit Gary after a long day at work.  It has been a tremendously successful week. The contrast between my professional life and my personal life is the difference between night and day.  Work is incredibly "UP" and marriage life is incredibly "down".

One day earlier this week, Gary's Hospice Social Worker called me at work to tell me that she was making a routine visit and wanted to talk to me.  I was in the middle of a meeting and since she indicated it was not an emergency, I asked her if I could call her back.  Of course, it was after 5:00 when I returned the call......it went to voicemail.

Today, in the middle of a security briefing with my faculty, she returned the call.  I asked her if I could call her back....of course, it was 5:35 before I got back to her.....voicemail.  How frustrating.  How do I do this? 

I went to visit Gary this evening and I got there after dinner.  He was wearing a shirt that does not belong to him.  It was a nice shirt, so I let it go.  I checked the label and determined there was no name.  It is always important to label everything as things get mixed in the laundry.

He was sitting at the table with Nancy and Martee and was tapping his foot on the metal base of the table.  tap. tap. tap. tap.....for 20 minutes.  I am glad these ladies have Dementia so they don't get bothered by the incessant tapping.  I could not get him to stop. So, I moved him over to the television area to watch "White Christmas".  He glanced at the t.v. every once in a while.  He was holding my hand.  He grabbed onto one of my bracelets that he gave me for an anniversary present.  He started twisting it and I thought he would break it.  I told him to stop and tried to pry his hands away.  It took all I could to get his hands to let go of the bracelet.  It was a vice grip.  I asked him why he would want to break my bracelet.

Like I thought I would get an answer.  What was I thinking?  Let it go, Ada. 

Annie the unit dog came in from outside and jumped on my lap and smothered me with kisses.  She is a sweet little dog.  She jumped over on Gary's lap and licked his face.  He had a glimmer of a smile....then it faded. She stood on the sofa next to me and kept looking at the television and then back at Gary.  It was almost as if she was telling him to watch the movie. 
Some time passed and I knew despite the hand holding and partial awareness of Gary, I had to go home.  I kissed him goodbye and told him that I would be back tomorrow in time for the morning sing-a-long.  He said that he loved me too and I left. 

I had a conversation today with a friend about the future.  I expressed that I am happy in my profession but that side of me also wants to know what is next.  I have never been one to just stay in a position and not grow.  What does the future hold?

I have committed to write a book starting in January. After that.....what?  I know the Lord will lead me as he always has.  I have to remember that my husband has a terminal illness.  He could live six months or six years....I just need to settle down and continue to love my husband.  I am committed to that and have been for 31 years.  It doesn't stop my need for personal fulfillment.....





Sunday, December 11, 2016

Announcement of a Death

God has an interesting way of getting our attention.  It is Sunday and I overslept.  Partially because I did not set the alarm clock and partially because I have been sick and tired all week.  When I awoke, I thought, "Maybe I won't go to church today.....I have so much to do..."  Something whispered, "Get up and go worship.  You have so much to be thankful for.....go praise."


So, I did.  As I walked into church, several people asked me if I knew Jim's wife had died on Friday.  Oh my!  Jim is a man who I have been sitting with at church on Sundays.  His wife has been in critical care in the hospital since January (it is December, folks).  He has slept most nights on the sofa in her room.  I can't imagine what they have been through together after 46 years.  He and I are sort of kindred spirits with two terminal spouses. 


I sat down next to him and gave him a hug.  He is the sweetest man and my heart broke for him.  She knew the Lord and he is comforted to know she is in heaven. Some of us took him to lunch before he left to go home, almost 5 hours from here.  Boy, did her death make me think.


As I sat next to him in church and again at lunch, I could not imagine his sorrow.  I asked him if he is still numb and I received an affirmative response.  I just ask for prayers for him and for all those who will lose those close to them.  Of course, I headed over to visit Gary. 


He had finished lunch and was sitting in the living room next to Nancy, his meal buddy.  She smiled a big smile and I squeezed her hand.  Martha asked for my help.  I squeezed her shoulder as she told me some story that tied to nothing in the room.  I distracted her and got her in a good place before I settled next to Gary.


I had about 40 minutes before the worship service started so I took him to his room for a mini-pedicure.  He seemed to like the attention.  While I clipped his nails, I played some Grateful Dead, Pink Floyd and Gospel music.  I gave him his bongos and he just sat there.  When my hands were free, I sat across from him and banged both hands on the bongos.  He put his hands on mine and guided my poor rhythm.  When we used to drive long distances, I would ask him to teach me how to drum and he would take my hand and count beats with me.  Even though he looked a thousand miles away, he was fully present sitting in that room today.


Pastor Tim came and brought a soprano angel who played the guitar and sang in a beautiful soprano voice.  She praised and sang Christmas carols.  Gary fell asleep while holding the table next to him.

I have no idea what he thinks during these times.  He seems peaceful.  He awoke as the pastor came over to shake his hand.  Gary repeated "God Bless You."  I left shortly thereafter. 

I can't imagine the day when Gary leaves to go to Heaven.  







Thursday, December 8, 2016

I don't wish Dementia on any family.

Until tonight, I had not seen Gary since Sunday.  I had a bad cold and did not want to take any sickness into the "Happy Place".  And....to be perfectly honest, I could use the cold as an excuse to get a break.  It is a horrible thought that I have to have an excuse to not go see my husband.  I love him but I needed to stay home and rest.  I did.  Between a spinal adjustment and Alka Seltzer, I kicked the cold in four days.

Tonight, I returned to visit Gary after work. He was sitting at the dinner table with a complete, untouched bowl of soup in front of him and his eyes tight shut.  However, he was wide awake.  I started with a "Hey, Garball."  He responded with a low key "Hey, Garball."  I kissed him and said, "Hi baberoon.  I got my hair fixed just for you and wanted to say hi."  He responded, "Hi babes."  He did not open his eyes.  I offered him soup and he opened his mouth.  He ate.  One of the caregivers kept saying to him, "Mr. Gary.  Open your eyes. Look who is here.  SHe looks so pretty." 

So, when he did not respond, I fed him his dinner of turkey, dressing and green beans.  He ate every bite without opening his eyes.  Finally, when I missed his mouth and got gravy on his beard, he opened his eyes and proceeded to pick the napkin up off his lap and wipe his mouth.  He has no reaction.  I said, "Well, there you are!"  He said, "I'm right here....."

At that point, I put my head on his shoulder and he kissed the top of my head.  One of the angels was taking this picture.



As I gave him his specially made hot chocolate, he drank it with a smile.  I could tell that the hot chocolate was the highlight of his day. 

I sat and thought about his life now.  He wakes in the morning and apologizes to the caregiver for her having to change his diaper.  He gets a shower and dressed for the day.  He eats breakfast and sits in his chair for the morning and is present for whatever activity is done in the main room.  He sleeps in his chair while waiting for lunch.  He has a snack mid-morning and has fluids to keep him lubricated.  Then lunch.  Then a nap. Then he apologizes to the caregiver that his diaper needs to be changed.  She tells him that it is okay and that it is a natural human function.  Then an afternoon activity.  Then dinner.  If we are lucky, the wife shows up and feeds him dinner and kisses him and tells him he is loved.  Then , he goes to bed.  Then he wakes in the middle of the night.  What does he think?  Does he long for days in our bed at night when he could roll over and touch me?  Does he dream? 

Meanwhile, at home, I am thinking, "What is Gary thinking right now?  Is he thinking of me?  Is he asleep? "

Life as a married person living apart is hard.  I feel so sorry for him that I could cry everyday....and most of the time, I do.  Sometimes the tears are silent and sometimes, sobs.

I don't wish Dementia on any family.

Sunday, December 4, 2016

I know Gary is "Terminal"

Gary has a roommate at the "Happy Place". Let's call him Ricardo. He has lived there for quite some time and is probably 90+.  In five months, I have never had a conversation with him as he is not very verbal.  I always say hello and sometimes there is a smile in return.


Recently, Ricardo sleeps a lot....at first in his chair.  Now, he is in the bed most of the time.  I had to go into Gary's room to get some supplies and asked one of the caregiver/angels if it was okay to go in while he was sleeping.  She said, "Of course.  He sleeps a lot now."  I said, "He doesn't feel well, huh?"  We both knew what I was asking and she said, "No, he's not well." Every time I walked in that room yesterday, I held my breath and watched for his breathing.  Its goofy, I know but I'm not ready to lose these precious people.


The prospect of dying is an unusual thought. I know Gary is "terminal" and for the most part, all the residents are.  Well, for that matter, we all are.  But having such a large concentration of old or infirmed people in one place is daunting.  Yesterday, one of my favorite residents had a sore throat and was crying.  As they waited for her son to come take her to the doctor, the angels all took great care of her....offering chicken soup, tea, honey, etc.


The other night, one of the residents passed out at the table.  I thought she had coded.  Within minutes of them calling 911, she had recovered.  Watching the whole team in action was amazing.  I feel good that Gary is there and not at home with us. 















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.