Unspeakable sadness

Tonight I experienced unspeakable sadness.  Its not that I won't experience worse in the future but for now, I'm at my limit.

I had an unbelievable day at work.  I spent three excruciating hours working on a budget that kept locking up.  My IT guy helped me troubleshoot the problem by changing browsers.  I worked on part of the budget and then found that the corporate office was completing that portion of the budget and my time was wasted.  Oh Snap! So, I was emotionally spent going into the evening.

I left work and headed for the "Happy Place".  I arrived while the residents were in the middle of dinner.  One of the angels was sitting between Gary and another resident and feeding them both.  I took over feeding him.  I kissed him hello and he had no visible recognition.  He ate every bite.   At one point I said, "I love you very much."  He replied, "I love you, too."      

He finished eating the three course meal and once the Boston Crème Pie was gone he turned his attention to the "Lapkin" around his neck.  Many of the residents use the bib-like napkin to keep clothing clean.  He kept reading the label over and over.....then he started putting the label in his mouth.  I tried to turn his attention to something else but it was a wasted effort.

I sat there and looked around the room and attempted to amuse myself by watching and listening to the residents.

"The Mayor" was particularly cheerful this evening and asking the others at his table  about their Christmas plans.  Dick told him that he and his wife are staying home this year as the family is scattered all over the country.  Ironically, the woman he thinks is his wife was sitting next to him and holding his hand.  They are not married but think they are.  She told "The Mayor" that she married Dick when she was 17 and expressed they had a great life.  She looked at Dick lovingly and longingly.  She told him she loved him more than he could know.  Strangely, I know she loved some husband, just not Dick. 

On one hand the disease is so cruel to put these two people together and on the other hand, it is beautiful that they think they have been married forever.  The funniest part is that "The Mayor" started flirting with her as if to make Dick jealous.  He was playing with them and laughing with a laughter I have never heard from him.  He was almost ecstatic that he could play a prank. Dick said that she was his and was completely confident that she would not stray to this stranger.  The whole scenario ended with "The Mayor" asking what they would be doing over the Christmas Holidays.  Dick picked up on the clue and suggested that she think of reindeer and Christmas Carols when she goes to bed tonight.  It is August but they are all in the Christmas spirit.

Debbie is very high functioning and stopped by our table to talk about the day and ask when they could go swimming again.  I was sitting within one foot of Gary who had no reaction to this whole scenario.  I asked if he enjoyed swimming and if he was looking forward to going again.  He grunted what appeared to be an affirmative grunt and continued sucking on the label.

After Debbie walked away, I looked at Gary.  I really looked deeply at Gary.  He has a fresh hair cut.  One could put a suit and tie on him and to the casual passerby, he could be a business man sitting at a restaurant at lunch.  But he is rapidly going away.  He had no reaction tonight to my touch or my words. 

I asked to be let out of the unit and found myself, numb, walking to the car.  As I drove home, the numbness continued.  Then, I realized that the numbness was morphing into sadness.  Heather and Xander were not in the mood to interact this evening.  I have to admit that it angered me.  People who live in the same house should have conversations beyond hello.  What is the point?

So, I sit here and type.  I struggle with which topics to highlight in my upcoming book.  I have considered writing it from Gary's standpoint, but then it would be fiction.  Who really knows what is happening for those who live inside the Dementia veil?  No one but them.   They cannot articulate those thoughts and feelings.  If we knew what they were thinking privately, then we would join them in the disease. No one wants that I assure you.

So, for now, I am allowing myself the loneliness and in the morning, I will shake it off.  I will return to the professional world where few know of my feelings or thoughts.  When those who do know ask how I do it, I respond "I get through it with the Grace of God."  Most just nod.  It is always awkward. 

He called me Gizmo!

May 30, 1985. 31 years ago. Gary and I met on my first day of work at Stoney Creek Resort.  I had graduated from college three weeks earlier, gone to Texas to visit my brother and a then current boyfriend.  I was supposed to start Graduate School on September 9.  I had been hired to sell Resort Memberships for the summer.  I had hoped to make enough money to pay my tuition for the first semester in the fall.


Instead, my life took a turn in a totally opposite direction.  After meeting my boss and getting a quick introduction to the job, I was asked to wait in the employee lounge for the top Salesperson and that I would spend the day job shadowing him.  He walked up to me and said, "Are you the new rep?"  I answered yes and he said those magical words, "Hello, I'm Gary Gerard.  Welcome to the team." 


Shortly thereafter, he asked me to dinner, we had already fallen in love and on July 7, I agree to marry him.  We set our wedding date on a Monday due to the resort work schedule.  September 9......graduate school did not happen for another 15 years.


During that time, we played on the lake, worked together and started a wonderful life.  At some point during that time he started calling me Gizmo.  It was a cute name that described the then young woman full of hopes and dreams.  In some ways, together, we never grew up.


Now, 31 years and many homes and jobs later, we live apart.  He has Fronto Temporal Degeneration and lives at a Memory Care unit.  He shows very little emotion these days and most of his language is a repeat of what he hears around him.


Today after church, I joined him in the dining room where he and the other residents were waiting for lunch to be served.  Peter, Paul and Mary's song "If I had a Hammer" was playing in the background and he was mouthing the words.  All the words.  I stood and watched for a while.  The next song came on and he did the same thing.  He was not repeating but singing along.  I gave me hope for a good day.


Sammie, one of the angels/caregivers, told me that he had been talkative at breakfast and had been very alert all day. I sat next to him and said, "Hi Garball! (a long standing nickname for him)" and  he promptly replied, "Hi Honey!"


Most of the conversation stopped there other than one word responses.  He seemed brighter and very alert today.  He continued to sing songs as they came on the radio and did this throughout lunch.


He overheard the angels giving the other residents there food choice.  Rather than rename them all, I merely asked him what he wanted to see if he would retain the information.  He answered, "Taco Salad".  He loved it and ate every bite.  Then, he ate a large slice of apple pie with whipped cream.


On Sunday afternoon, they often pull back the tables and chairs and "bowl" in the main lounge.  We moved next to the wall and watched the ambulatory folks bowls.  He put his arm around me and continued to rub my back.  He put his leg across my legs and was very comfortable.  At one point, he grabbed my hand and said, "Gizmo!" I looked into his eyes and he produced a huge smile with shining eyes. 


It took me a second to realize that he has not called me that in years.  Sammie walked by and asked what he had called me.  I told her it was an old nickname and she said, "I told you he was having a good day."


That smile only lasted for a few seconds but I thanked him for remembering and calling me that.  He responded, "Sure."


As I relished in the memory, the son of Effie came in to see his mom.  She was seated next to me and introduced me as the wife of one of her boyfriends in the house.  She winked at me.  I was amused as one never knows what will be heard at the "Happy Place".


I was reluctant to leave.  Would this be the last time he is this alert?  Should I stay until he fades?  I made the decision to leave. I kissed him goodbye and left as the Sunday afternoon Bible study began.  I knew he would participate at some level.


I stopped by the craft store and bought buttons for the coat of Martha.  She lost them and I thought it would be a nice gesture.  I will sew them when I go by tomorrow evening.


I keep running that special moment through my brain.  "Gizmo!"


I cherish the first time he called me that and I cherish today.  During 31 years, little "Gizmo" has grown, flourished and become a woman that can take care of him in his failing health.  She still has hopes and dreams...they are just different than they were pre-Gary.

Friday night at the "Happy Place"

Friday night.  After work, I so wanted to go straight home, fix dinner, have a chair massage and fix a cocktail.  No!  I want to go see Gary worse than I want those things.  Why can't I do both?

So, I stopped by the Happy Place in the middle of dinner.  Gary was sitting at the table being fed by one of the angels.  I interrupted and told her that I would feed him as I was sure she other things to do.   She promptly let me take over the feeding of the Salmon.

They certainly have great food at all meals.  Soup, main course (tonight was Salmon, green beans and peas, rice and pumpkin pie), and a juice and water.  He always eats everything on his plate.  The daughter of Janie was sitting at the same table and attempting to get Janie to eat.  Janie is non-verbal but very sweet.  I have assisted in feeding her many times and she is also very obstinate about eating. The daughter got her to eat more than I have ever seen but I was reluctant to tell her as she thought she had not eaten enough.  My problem is that I want to take care of all of them.....I can't do that.

I asked Gary how he was today.  The classic response presented itself! "More better than good!"  Hallelujah! Any time he says that, I know he is truly still in there even though his facial expressions have gone to near flat.  We get very little emotion that is visible these days.

Here are the interactions I had this evening:

Martha was concerned that she has lost all the buttons off her tiger print coat.  I told her I would look for some 1.5 inch buttons for her. 3 to be exact.

Tricia was thrilled that the pumpkin pie was more like mousse than pie. 

Debbie told me that she so enjoyed swimming with Gary at the YMCA. She furthered expressed that he was her friend and that he had a very good time.  He told her on the bus that he wants to go again.  I will take any input regarding his daily reactions that I can get.

The "mayor" told me that he was having a good time and that indeed, his car keys were with the Valet.

Miss May asked me to get her some pie and followed with a demand for her walker.  I helped her get moving and she patted my arm and thanked me.

My moments there have become more than just visiting Gary.  The whole community has needs.  Granted, I am only there for moments during the day but I see very few family members.  This is proof that Gary's idea of "The Circle of Life Holistic Health Care Center" was such a far reaching but necessary facility.  It was designed (never built) to take care of the community and pull people from the general community in to help visit with and take care of these people.  It was brilliant but never completed due to his own decline.

So, perhaps in the future, not only will I document this life in a book but I will also find the funding and the time to complete his dream.  I sure wish he lived there now.

While he is in a wonderful place, Nirvana would be better. 

After having one of the caregivers let me out of the unit, I went to the store and then went home to fix dinner. I had a wonderful meal of artichoke, crab cake, and blue cheese mayonnaise with a cocktail on the side.  I now sit alone and watch television while I type this.  When one is a social person, that really ceases to be an exciting activity.

Due to feedback, I have changed the color scheme of the blog to accommodate printing and better online reading.   It seems like I am always attempting to please everybody.
How am I doing?

This picture if of Gary near our retirement home in Boquete Panama.....about seven years ago.

Swimming at the YMCA

I arose this morning in a feel-sorry-for-myself funk.  I could not seem to shake it.  I was mad at the world.  I listened to hymns in the car and that helped a little.  After I got to work and started working, I got over it.

In the afternoon I got very frustrated with my budgeting work and took a quick break to think that Gary was actually probably at the YMCA with some of the other residents.  Shortly thereafter, I received an email from the Resident Coordinator saying he had a good time and enclosed the following pictures (cropped for privacy of others):

 

I was thrilled that he was back in the water. 

 

Later I attended a family dinner at the "Happy Place" and got more details.  He shivered when he first got in the water which was 86 degrees.  After a while, he got comfortable and made some of his noises of enjoyment.  Overall, he had a good time and they are open to taking him back.

 

 

When I visited him tonight I asked if he had fun swimming.  He said that he had.  I could tell that he really did remember. I was tired and kissed him goodbye and prepared to leave.

 

One of his caregivers stopped to talk to me and tell me that many mornings she is the one bathing him and helping him brush his teeth.  She exuded pride in her work.  I am thankful her.  I am thankful for all those who work there.  I am convinced there is a place in heaven for all of them.

 

As I drove home I pondered my future.  In a few weeks, Gary and I will mark our 31st anniversary.  There will be no special dinner, no flowers, no international trip.  My have times changed?  I love him still and know that deep down he knows and loves me.  I am blessed to have him in my life no matter how much it hurts some times. 

Am I Doing enough?

Tonight I made the decision to not visit Gary and come straight home for a change.  I have parmesan pork chops in the oven, sautéed veggies in the pan and a glass of wine.  Pretty ideal circumstances, huh?


No way.


I don't know what to do with myself.  My eyes are tired from reading at work.  My arm hurts from typing and I want my husband back.


I talked to a dear friend today who is still struggling with finding her new normal after our college closed 1.5 years ago.  She liked her life and hasn't found the perfect fit yet.  Boy, do I feel her angst.  I get it, too. I liked my life, too.


What is my destiny?  Am I doing the right things?  I am doing fine at work ..... I can't share my success with Gary.  All I can do is pay his near $7000 per month invoice. 


When people ask me how I am doing, I answer "Okay."  That is what I feel.  Is that enough?


Life is pretty weird right now.  I know that God is in control but the human side of me wonders daily if I'm doing something wrong.  Am I doing enough? 

Celebration of Good Days

On Sunday, I visited Gary in the late morning.  He was sleeping in his chair in the dining room when I arrived.  I went straight to his room without waking him to take the suitcase of long sleeve shirts that I brought him.  After rearranging his closet, folding clothes and generally tidying his space, I went out to see if he was awake.

He was awake and responded to my hello kiss.  He immediately shut his eyes and nodded while waiting for his lunch.  "We" selected the baked salmon with rice and brussel sprouts.  I started feeding him and noticed that he never opened his eyes.  I did not tell him to open his mouth once but opened his mouth the appropriate amount with every bite.  He sensed if it was broth only and pursed his lips enough to slurp the broth.  If it was a larger bite of salmon, he opened his mouth appropriately.  I asked him to open his eyes several times but he never complied.

I was amazed at his ability to sense and perceive what he needed to do.  He did not respond to questions or prompts.  He ate and sat quiet.  I left and went for an afternoon, once again, to myself. 

Today, after work and a chiropractor appointment, I stopped by in the middle of his dinner.  He was alert, wide eyed and smiling.  He said hello and responded to my kiss.
It seems all the residents were more awake and spirited tonight. 

One of the caregivers told me that he had been singing to the Fleetwood Mac compact disc earlier and laughing.  He was completely aware of me and answered some basic questions.  As I fed him his dessert, he commented it was good without prompting.

"Marvin" (names changed to protect the innocent) was sitting at the table.  He was very confused and apologizing that he did not have his wallet to pay for dinner.  Over the next few minutes he was told by several people that he did not need money and his family had paid for everything.  He asked about his wife.  Two of the caregivers looked at one another and were not sure what to tell him.  One of them told him the truth.  She said that when he moved in 4 years ago that he told them his wife "Helene" had died and gone to Heaven.  He instantly grieved for her.  I watched his face go sad.  It was the right thing to do but for a moment I experienced his agony.

Then, one of the caregivers mentioned his job at the FBI.  He instantly went clear and told me about his 10 years serving in the FBI and was secretary to a very prominent FBI director.  I was fascinated and asked him about the experience. He shared that he never felt as if he was at work and that he allowed this director to call him by the same nickname that only his mother had called him.  He remembered that life fondly and switched the subject to his wife.  She had also worked with the FBI and held a rank higher than his.  We agreed that she is probably organizing Heaven.

I then asked Marvin about his experience as Mayor of a local community.  He told me about the election and commented that it was noble work and he had enjoyed it.  He then felt his pockets for his car keys and became upset that he could not go home.  I suggested that maybe he left them with the parking valet.  He accepted that premise and asked to go to bed.

Meanwhile, Gary was listening and often repeating comments we were making.  "Organizing Heaven.  Keys with the valet. Mr. Hoover."  The entire time he was holding my hand and sneaking kisses while I talked to Marvin.  He was alert.  I then realized that he was wet and asked the caregivers to change him.  As they moved him into the wheelchair, I prepared to leave.  As I was walking out the door, I blew him a kiss in our previously customary fashion.  The caregiver helped him blow me a kiss (Giant SMILE ON HIS FACE) and I caught it and put it in my blouse as if it made my heart beat.  He gave me the most genuine smile and told the caregiver that I was cute.  On that note, I left.

The changes in demeanor and behavior from day to day are amazing.  I love the days when he is like he was tonight.  He faintly resembles that man I loved fully for so many years.  At the same time, I am somewhat dismayed and upset on those days because the contrast to the bad days hurts so much.  However, I will ALWAYS take the good days and celebrate them. 

Incident with the butter knife

I came home from Virginia Tuesday evening.  I got home late and went to bed.  On Wednesday morning the activity director at Gary's "happy place" called me.  Normally when they call for business reasons the call starts with "Hi Ada, this is so and So from Sunrise.  There is absolutely nothing wrong."  And then they continue with their business.  It is a nice and comforting way not the scare the hell out of the family member seeing "Sunrise" on their caller i.d.


This time it was different.  She said, "Hi Ada.  This is so and so from Sunrise.  Are you at a place where you can talk?"  Hmm.....this time there was no "there is absolutely nothing wrong."  She started with saying that Gary was okay now but they had an incident at dinner the night before...apparently, while sitting at the dinner table, he grabbed a butter knife out of the caregiver's hand at told her that he was going to cut himself while making a movement toward his wrist.  Of course, they have now taken away his utensils and feed him exclusively.  They have monitored his behavior and questioned him extensively.  No sign of suicidal tendencies. 


I went to see him that day she called and when I arrived he was sitting with the music therapist and had just finished a session.  He had his back to me so I popped around his chair and said hi.  He looked me squarely in the eye and said, "I missed you."  Thank heaven!  He knew me but went back into his sleepy funk that seems to occupy several hours of his day.  I am expecting a call from his Hospice doctor to discuss medications.  For now, he has stopped the public masturbation.  He cannot harm himself. 


His daughter Heather and our friend Joshua also stopped by for a few minutes to visit.  After they left, he repeated twice "Heather and Joshua.  Heather and Joshua."


For the most part he sits (in his new wheelchair) and repeats what he hears and has very little original conversation.  I stopped by on Thursday after work to find him sitting and watching a movie....sort of....he was kicking off his shoes and putting them back on repeatedly.
I chatted at him for a few minutes and rubbed his arms.  He did not seem to care too much except for when I kissed him on the cheek or lips.  He smiled.  That gives me some deep sense of pleasure knowing he still knows me.  It terrifies me that someday he may not.


Last night I attended my five year old grandson's pizza party and today we took him to the zoo in San Diego.  No Gary.  How strange I still find it that he is no longer an active part of my life and activities.  He is in most thoughts however, and that just makes it tougher.  I wanted him to see the elephants and tigers....he would have loved it.


As I rode in the car on the way home I thought of him.  I was numb.  I still am. 

Confined to the Wheelchair

On Thursday I traveled from my home in Anaheim to my hometown of Waynesboro, Virginia.  The purpose of the trip was three-fold:  35th High School Reunion, Visit with my 83 year old Dad and attend a family reunion.  Though the schedule is jam packed with activity, I am sleeping heavily at night and getting some much needed Caregiver Rest. 

While attending a get together last evening, I received an email from my husband Gary's Memory Care Facility giving me the update I requested while I was traveling. It is amazing that I was surrounded by so much love from friends of old and laughter....lots of laughter and at the same time get more dreadful news. 

Basically, I was told that the new walker I bought Gary will go to little to no use due to his ability to ambulate.  The staff of the facility and the Hospice nurse have determined that even with the additional support, he is too fragile and shaky to walk anymore without serious risk of falling.  So, they have delivered a high back wheelchair that enables them to move him about easily, recline and prop up his feet higher.  

They are also trying a different medication to assist with his primal urges that have been manifesting at the dinner table.  i will report on how that is going for all interested parties.

Social media has made the sharing of this awful tale available to the world.  I was amazed at how many people follow this blog and our amazing adventure.  (If you have been a reader since the beginning, you will know that I prefer to call our Odyssey an adventure rather than a nightmare.) Just like in mythology and the Bible, many adventures have terrifying moments.  However, if one keeps the proper mindset, it is educational rather than scary.  

Thanks to all who read and support our journey.  Thanks for the prayers and support.  It came to my attention from talking face-to-face with some of my Facebook friends that they do not know how to share this blog outside of Facebook.  I have been asked to provide a link for sharing.  Here it is:

gotoyourcorners.blogspot.com

Or people can usually Google "Go to your Corners Blog" and find it easily. I would encourage sharing of the blog to anyone who may be suspect of a family member who is showing signs of this awful disease.  My words are not magic but may be helpful in certain situations....at least so they don't feel alone.

As for now, I know my Gary is in good hands whether I am there or not.  I will enjoy my time off and continue to pray for a miracle.  Only God can do that.

Do you know what I mean?

Due to traffic and a much needed Chiropractic appointment, I arrived at Gary's Happy Place later than normal.  DInner was over and most of the residents had scattered to various places in the Unit.  I found Gary next to sweet Patti.  She is required to eat a soft food diet and was the very last person eating her dinner.  Gary was sitting there with her drinking his water and juice. 

I said hello to Patti who normally covers her face and is introverted.  SHe said hello to me and when I asked how she was today she replied an excited, "I'm fine.  ITs good to see you."  It does my heart good to get responses from these folks as they don't have many visitors and there is a familiarity in their "hello". 

I said "Hi Baberoon.  How was your day?" Gary answered, "hello, wait til I finish my juice." When he finished, I offered a kiss and he kissed me and said a friendly hello.

After a few minutes of slow connecting, I knew he really knew I was there.  I told him that our friend Susan was coming to visit him tomorrow.  He showed no reaction.  I have told her not to expect too much.  It can be painful if one has any expectations.

One of the caregivers decided to play "Mary Poppins".  She and I gained quite a bit of excitement with some of the ladies as they gathered in the living room as the Overture from Disney began on the television.

I moved Gary to the sofa so he had a view of the movie whether he was interested or not.  I rubbed his arms and told him that I loved him from the top of his head to the bottom of his toes.  He smiled, genuinely, and said he "knows what I mean".  I knew that for a moment he was back with me.

I told him again that Susan was coming to visit.  He was listening to the movie and parroting what he was hearing Dick Van Dyke saying on the screen.  He was aware and I would not complain.

He kissed my hand.  He told me he loves me and it was unsolicited. I tried to savor the moment.  I don't know in any given moment how often he might share his emotions. Those moments are priceless and precious. 

I chose to leave then to get some dinner.  I did not want to spoil the moment.  I told him that I needed to leave to check on Diva, our Beagle, who is home with an injury.  He seemed to understand. If he didn't understand, at least God gave me the comforting illusion that he does understand.

Good night my darling.  Sleep well.  I ordered a new walker so you can move about more easily.  It should be delivered tomorrow and I will see it is delivered.  The caregivers are angels and will see you are trained in how to use it.

I love you more than you know...from the top of your head...to the bottom of your toes...and everywhere in between...do you know what I mean?

Holding on tight.....

I arrived in time to assist with feeding Gary his lunch.  He said hello to me and started mumbling something under his breath.  I asked him to repeat.  He kept his voice low.  I put my ear to his mouth and heard, "Fifty eight, fifty nine...."

I moved away and checked out the surroundings.  Annie the dog came over and wanted on my lap so I picked her up to say hi to Gary.  He showed no reaction.  Just two days ago she did the same thing on her own and he loved it.

 

 

 

Obviously, every day is not the same.  For example, the Manager sat down with me yesterday and explained that Gary started taking his new medication on Monday.  On Tuesday however, while seated at the dinner table he pulled out his penis and was holding it so tight that they thought he would harm himself.  I did not receive any details regarding how they either distracted him from his laser focus or how someone may have pried his fingers away.  I think of the poor ladies who may have been sitting next to him....the horror.  Every day is a new adventure.

 

I don't seem to experience any of the exciting times when I visit.  Today consisted of him having lunch, trying to learn to use his walker and a potty break.  Those were exhausting for him and for me.  I left shortly thereafter and spent the day thinking. 

 

Should I buy him a better walker as the one Hospice provided is old and shaky?  I want him to have the best but I'm not sure how much longer he can walk.  His legs are like rubber bands but perhaps they are just weak.  I just answered my own question.  New walker it is.

 

What is it that I should do with my time?  Should I stay with him more despite the fact that he doesn't seem to notice.  When he is like that, I get nothing out of it and neither does he. 

 

I am going on vacation this week and will be gone for 7 days.....from this end that seems an eternity.  He probably won't notice too much.  I am anxious to get reports from the caregivers when I return. 

 





They lived happily ever after.....

I went to visit Gary this evening after he had dinner.  He was sitting in a different place in their living room with "The Wedding Planner" on the television.  The room was sparsely populated tonight.  He was sitting by himself zipping and unzipping his jacket.

He said hello and accepted my kiss with enthusiasm.  That is where the emotion ended.  I asked about his day and he said, "It was perfect."  He could not tell me how or why.

I rubbed his arm as he zipped and unzipped his jacket.  He quietly repeated phrases from the movie and various other things he was hearing in the room.

Occasionally, when prompted, he would look at me.  Most of the time, he looked at his zipper or the shoe he had just kicked off.

I found myself watching the movie or looking around the room.  I watched the nurse who looks astonishingly like Annette Funicello dole out nightly medicines.  She is so kind and talks to each patient as she works with them.  I could close my eyes and see the wings on her back.

I watched the residents do what they all do.  Martha sits and thinks of something and cries.  When the nurse brought her the medicine she stated that she would rather have a gin and tonic.  Me, too.

Thelma wonders aloud when he son will pick her up and Donna complains that she ate too much and she is fat (not!).

Gary zips and unzips his jacket. I would never let him know it but I started to anger.  Why is he like this?  What happened in our life to cause this?  Why can't he "snap to" when I come and pay attention to me?  Reality says that he probably never will. 

So, I debated.  Do I stay and watch the rest of the movie?  Do I put him to bed?  Should I leave?  I can watch the movie at home while I'm eating dinner....there is that damn guilt again.

I decided to sneak out the kitchen door when one of the caregivers was nearby.  I told him (as usual) that I was going to let Diva out to pee.  He zipped and unzipped his jacket.

I left.  For the first time since the day I moved him in.. I felt incredible sadness.  I did not cry.  There is no point. 

So, I listen to sad songs on the way home and attempt to work it through.  Sometimes, I can do it and other times, like tonight, I cannot.

During a driving point today, I thought of where I might live after Heather graduates,gets a job and moves out.  I found that it all depends on whether or not Gary knows me or is even alive.  Am I really thinking these things.  Is this healthy or cruel?  Yorba Linda is a nice place for the future....or the beach.

Meanwhile I envision that Gary is still sitting in that chair zipping and unzipping that damn jacket.  I felt okay about coming home.  I watched the end of the movie "The Wedding Planner".  They got married and lived happily every after.....right.

He just "is".

I arose early  this morning and took the dog for a walk.  I achieved my goal of getting to Gary's by 7:20 so I could spend time with him and feed him before going to work.

When I arrived, he was already seated at the table facing the door and he saw me come in to the room. I smiled really big and said "Good morning, Honey!"  With instant recognition he responded, "Good Morning, Honey."

We sat together and I made small talk with him as I rubbed his arms and held his hands.  After a few minutes, he fell asleep and I did not bother to wake him.  I just sat next to him until breakfast was served at 8:15.  I fed his oatmeal but had to leave as the main course was being served.  The caregivers do a great job with him so I am never concerned leaving him.

They say that he is talking more than he did when he first arrived.  I do not know if this is a change in medication or familiarity.  Either way, its good.

One of the caregivers commented that he is very easy to work with and bathe.  She brushed his teeth three times yesterday and attempted to floss...however, he wont keep his mouth open.  We are going to try mouthwash next.  One thing he always had was excellent oral care and he was meticulous about brushing and flossing.  They comb his hair differently and I haven't said anything as I guess it does not matter.  I am just content to sit with him. 

He seems neutral.  By that, I don't see happiness nor sadness nor unrest.  He just "is".  I am grateful to have found such a wonderful place for him. 

Feeling sorry for myself....

So, I'm feeling sorry for myself.  After work and the Chiropractor, I stopped by Gary's to visit for a while.  They had finished dinner and he was sitting at a table with three ladies and next to him there was a walker with a seat.  I asked Mary if I could sit on her chair and she nodded.  I sat next to Gary, kissed him on the forehead and held his hand.

He responded with a "Hi Honey."  No emotion, no love, just words.  At least he said the words.

He spent the next 20 minutes trying to put the tail of his shirt over his knee.  No matter what I did, he did not deviate from his fixation.  I put a picture book in front of him and hoped to change his fixation.  I asked if he had a good time at the ballgame and he responded in the affirmative. 

All the information I received this evening came from one of the caregivers.  She seemed to sense my helplessness and gave me the following information:

• When Gary walks past my picture, he says "Ada Mae."
• When I am not there at mealtime he often calls out for me by saying "ADA MAE?".
• Today, he sang along with the compact discs I brought to the center.....he sang to Fleetwood Mac and to many Grammy winning songs he knows. It does my heart good to know he is singing.
• Today, when he was repeating something he had read on the menu, one of the other residents said, "He doesn't know what he is doing."  He immediately stopped shaking his foot and repeating and turned to look at her and say, "I know exactly what I am doing."  That is my Gary!!!!!

So, I was conflicted.  DO I stay and watch him sink into his shirttail and hope he has a moment of connectivity or do I leave and go home, have dinner and a glass of wine.  I chose to leave.  Felt guilty ever since.  This disease sucks.....in so many ways.

Yesterday I posted on Facebook that I want to do something big.... I am not sure what that it is but I have time on my hands and I feel God wants me to do something BIG related to Frontotemporal Degeneration.  Make people aware...raise money..speaker series...something.

I am open to ideas.......I have too much personal time on my hands......

"We have a problem with Gary's Nightime Behavior"

I was in the car today on my way to my other campus with an old friend from Heald riding shotgun.  I was showing her our campuses of which I am so proud and being in the same industry, I knew she would appreciate a tour.

The phone rang in the car and the conversation comes through the stereo speakers via Bluetooth.  I recognized that it was a phone from Gary's hospice nurse, so I took it.
She greeted me and started talking about something that she was sure I knew about.....as she continued talking I realized that she was talking about something that had not been mentioned to me.  I had trouble deciphering exactly what she was saying.  Either Gary had been improperly touching the caregivers or he had been "touching" himself.  They were recommending, after talking to his doctor, that he get an additional medication to help him relax and not fixate on his private parts.

I looked at my friend and we were both about to burst out laughing.  Apparently, he is not doing anything unacceptable with the caregivers, but they have "interrupted" him at night and have to leave him alone to finish.  I didn't know whether to be embarrassed or cheer him on!  Thank heaven Debbie is an old friend who understands caregiving and we had a laugh.

During the same car ride, I shared with her that I had received a call from U.C. Irvine requesting that Gary again visit the neurologist.  This seemed odd in that the last time we spoke the doctor shared that he did not need to see Gary again as "there is nothing I can do for him."  His diagnosis is why we now have Hospice benefits.  I had asked the calling secretary to ask the doctor if there was a mistake.  While we were in the car, they called back to confirm that indeed the neurologist h confirmed he did not need to see Gary. 

I shared with Debbie that I was glad that I did not need to take him out of Memory Care and drag him down to UCI for an appointment.  On the other hand, the neurologist was confirming that there is no hope for him to recover. I knew that but it does not make the fact any easier.  My husband is terminal.  How sobering. The whole situation was uncomfortable.

I later visited Gary and fed him dinner.  I took some new CDs that he and I have listened to multiple times.  After dinner he was singing along to "Mack the knife: I Left My Heart in San Francisco" and other Grammy winners.  Hearing him be aware of the songs made me feel better.  At least for now, he appears okay.  I will not say happy and I can't say sad....he just is.

So tomorrow he will be slightly medicated.  I'm sure this is not the last adjustment we will have to make .....


When I think back over the day, I am grateful for friends. The reaction of someone sitting in that seat hearing about my husband's behavior in the Memory Care Unit could have been ugly....instead, it was accepted and the reaction came with acceptance.   God sends what who we need when we need it....

Date Night in the Courtyard

After much inner debate last night, I decided to visit Gary after I finished another appointment. 

When I arrived at Sunrise, there was a flood of people streaming out of Gary's Unit (called Reminiscence) headed toward the Assisted Living courtyard.  They were headed to a Jazz Saxophone Concert.  I ran into the Manager who said they were changing Gary and that he would be right out. 

When he emerged from his bathroom in his upgraded wheelchair, he greeted me with a somewhat smile and really had no clue what we were doing. I wheeled him out to the courtyard and got settled.

We were sitting next to the make shift bar and he kept reading the wine containers aloud.  I asked him to be quiet when the musician started playing but he continued.  After a few moments, he realized the music and throughout the concert tapped his hands (to the beat, not like he normally does) and even sang a little.  Several times at the end of a song he would comment "Beautiful.  Just Beautiful."

As I sat there with him, I put my arm in his lap.  He held my hand, stroked my arm and even kissed my hand a couple of times.  At one point he picked up my arm and kissed it.  It was very sweet. 

At the end of the concert, I took him back to the living room at his Unit and said goodbye.  I still don't like leaving without telling him  so I have defaulted to telling him that I have to go check on Diva.  He doesn't question me but really never says goodbye.  I kiss him and tell him I love him and he responds in kind.  It is always a bittersweet departure.

It felt like a date night......kinda cool.

"They are letting us stay here tonight."

Sitting in the living room at Gary's Memory Care center is a real laughable experience.  The residents have conversations with each other, with neither of them knowing what the other is talking about but they go along and it becomes comical.


For example:


One female resident picked up her purse to go to her room for the night.  She stopped by our table and said goodnight to another female resident. Lets call them Martha and Irene.


Martha:  "Good night my friend.  We had a good day."
Irene:  "Yes, we did.  Did they make you work as hard as I did?"
Martha:  "Yes, but lets look at the bright side.  We must have done good work because we still have jobs and they are letting us stay here tonight."
Irene:  "Yep.  What did they make you do?"
Martha:  "I had to put together that engine out of the car that broke down."
Irene:  "They are tricking us.  I put together the same engine.  Have a good night.  I love you."
Martha:  "I love you too and I'm glad you are my friend."
Irene:  "I love you, too.  Now go to sleep. I'll check on you later."


I am quite positive that neither of them recall this conversation but it is amazing to me that they pick up on each others' memories.  In my mind, Martha probably worked in a factory during the war (WW2) and really did put together engines.  Irene, on the other hand, was probably raising children and knew nothing of the industrial life but knows of strife and labor.  As a witness, it was fascinating and amusing. 


Meanwhile, Gary is sitting next to me listening to this whole conversation.  For those who have read my blog, he is a repeater.  He repeats two to three times various things he hears.  If its the answer to a question or an original thought, he says it once.


So his words repeated hearing this conversation was:
"Look at the bright side.  We have jobs.Look at the bright side.  We have jobs.Look at the bright side.  We have jobs."


And then, "I love you too and I'm glad you are my friend."


As he looked at me, he only said this once.  He told me he loved me and that I was his friend.  Then he followed with, "I love you darlin'".  It was an original thought. 


Other examples of the importance of listening to the residents....


Today, I was sitting at the dinner table with Gary and three other residents waiting on their food.  They had a choice of spaghetti and garlic bread or a hot dog and chips.  One of the male residents....we will call him Bill, told the caregiver that he wanted a hot dog.  His eyes lit up with glee until she brought the hot dog covered in ketchup, mustard and relish.  He said very plainly, "Take it back, I don't want all that garbage on it."  She heard that he did not want it but did not really hear him.  She brought him the spaghetti and garlic bread...he just picked at it.  After about 20 minutes, one of the supervisors who had not heard any of this came by and said, "Bill, you did not eat your food."  He said, "No, I did not."  I spoke up and asked if they could bring him another hot dog and to ask him what he wanted.  They did.  He only wanted mustard.  He got his hot dog and was very pleased.  He ate every bite.


I am not judging as I had the freedom to sit at the table and overhear and really actively listen to these people.  If I had all the money in the world, I would hire an advocate for each of them to act as a personal assistant for them all to ensure that every conceivable moment is giving them what they want. 


At the same time this was happening, one of the other caregivers was bending over backwards to prepare the Cobb Salads exactly like one of the residents wanted.  When that resident spoke his preference, many of the others spoke up and wanted the same treatment.  She made sure that his salad was prepared EXACTLY as he stated.  The look on his face when she brought it to him was magical.  Like a child in a candy store.


My point in this part of the conversation should be to thank all the caregivers in the world who are going above and beyond to make these people happy.  They try to satisfy some small like or memory they have.  The caregivers are angels who have a place waiting in heaven.


As I sit next to Gary and hold his hand, bring him a blanket, snip his fingernails, organize his closet, unpack the chair that finally arrived, and to rub his arms.....I think, " Lord, help me continue to be the wife he needs.  Help me to help him have a good, comfortable life."


At this point in his Dementia....that is all I can ask for....so, I left and went out for lunch and had a manicure and a pedicure.  I fell asleep in the chair while receiving a leg massage. 


I  awoke to the reality that my caregiver duties are really not over.  I merely changed positions on the team. 

Surreal Return

I returned to Anaheim yesterday from a funeral trip to Northern California.  As I left the airport I was excited to stop by Gary's Memory Care facility to visit him after not seeing him for a few days. 


As I drove into the parking garage of the place, it seemed surreal to me.  My thoughts were confused.  How is it at 53 years old that I am driving into a Memory Care facility to visit my husband of 30 years?  My husband is also getting benefits from Hospice. Is this real?  As the all to reality of the situation came to me, I sucked it up and went upstairs.


I entered through the double doors which are set on an opener.  When you hit a button the door swing open and I walk through as if I am a Charlie's Angel making an entrance.  (Gotta have fun where I can!) The lobby was set up with lots of chairs facing the piano and the Assisted Living Residents were starting to sit down for a concert.  Then I noticed that some of the residents from Memory Care were also coming out to the concert.  No Gary.  So, I gained entrance into the unit and found him sitting quietly on the sofa watching a movie.


I had arranged to have his hair cut while I was gone and they did a nice job but did not trim his beard as requested.  His hair was combed differently.  "Let it go, Ada."  I tell myself this a lot for sanity sake.  Some things just aren't as important.


He seemed happy to see me.  Not happy like in the old days (before dementia) when he would have risen, given me a big kiss and asked how I am.  No, just a smile of recognition and an I-bend-down-to-catch-a-smooch kind of kiss.  I sat next to him and held his hand and caressed his arms.  He liked it.  I did, too.


I noticed that his fingernails needed trimming but I had not brought the trimmer so one of the caregivers found an emery board and I started to work.  Just filing someone's nails takes awhile....but I had nothing else to do.  He seemed to like the attention and the human touch.


He was dressed in his jeans and a yellow golf shirt.  A nice look that was more reminiscent of Gary. As I filed away, one finger at a time, I was thankful for the gift of having him alive.  I thought of the wife of the man just buried and grieved for her. 


During the filing session, Gary was served chocolate, soft serve ice cream.  He ate it on his own with a spoon and seemed to get it all in his mouth with no spills....until the last bite.  In recent months, he  has developed a movement when eating that slams his spoon or fork repeatedly on the plate or bowl, as if he is frustrated.  The last flick of the spoon sent ice cream all over the front of that yellow shirt. 


So, I walked him back to this room and changed his shirt.  These moments together might seem trivial to the casual reader but to me, each is precious. It was around 3:45 and I planned on staying with him through dinner and into the evening.  Those plans were changed when I received a text from home that our dog had a problem and had relieved herself all over the rugs.  I knew I would be carpet cleaning so I finished Gary's nails and said a quick but loving goodbye.  I was angry that once again, life is not allowing me what I feel I need with him. I considered possibly going back later in the evening.


After cleaning the carpets, I prepared a box to keep in my car for Gary's needs.  It has two different beard trimmers, fingernail clippers and a file.  That way, I can just do what I need when he needs it.  I did not go back for a second visit.


So, its 6:30 am and I was up earlier than normal.  I feel slightly melancholy but hopeful that tonight's visit will be better somehow.  I am not sure what I am expecting except for time with him.  My day will be full of university happenings and will keep my mind busy and off my personal situation. 

Sickness preventing Visiting....

I have a head cold and a slight fever.....this is really inconvenient.  It is a bad situation because I am supposed to travel tomorrow to a funeral in the Bay Area (am still going) but I don't feel right going to see Gary while I'm sick.

His body is at great risk and I can't risk him getting a cold or worse, pneumonia.  I saw him for a short period yesterday and was there in time to feed him dinner.  He ate voraciously and had a second piece of pie.  I told him that I was starting to feel sick and that I might not come by for a few days....I am not sure if he understood or not.

I feel bad when I can't see him everyday.  I love him even though he is a shell of the person from before the Dementia.  Frequently he sparks up and has similarity to my Gary. 

Being around him means more to me as I see other deaths around me.  My friend Harvey died on Tuesday and another childhood friend died today in a motorcycle accident. As we age, this will become more prevalent but knowing this does not make it easier.

So, seeing my bibbed husband while I am feeding him his dinner is not such a bad thing.  He is mentally, partially still here.  I will hold on to that as long as I can.

I forgot to do what?

Tonight provided a new experience in my life.  A Dementia support group.  After work, I headed toward Gary's place and spent less than a half hour with him before I joined my first facility sponsored support group.

I did not say goodbye to Gary, I only said that I was going to a meeting and that I would return.  I was the next to last to enter the room so I sat through all the other participants sharing their stories about their loved ones.  They are all at varying stages of coping with the horrible disease that has devastated the family units we know.

As the stories unfolded, I found myself listening intensely with no emotion coming to my heart.  It was strangely cold as I sat there and saw people cry and pour out emotion.  I have become way too good at suppressing my emotions. 

After 1.5 hours, it was my turn.  I don't know how long it was supposed to last but I found that I wanted to go home and felt the others did, too.  I shared anyway and got a little teary eyed.  I really don't recall what part of the story I shared but others seemed to listen and truly care.  I knew when the talk turned to funny stories of events at the Unit that we were all done.

I had not had dinner and was tired and found myself in the parking garage.  It was not until I was half way home that I realized I had not gone back and said goodnight to Gary. I was not so devastated but certainly bothered by my carelessness.  During the session, it became apparent that it becomes easier to leave and to not go everyday to visit.  Tonight proved the point. I am undecided if this is something I want to become accustomed to doing.  He is my husband....shouldn't I want to see him everyday?  After all, he still knows me. 

For now, I will do what comes naturally.  Every time I see him my heart still flutters as I love him so much.  Every time I see him my heart breaks because I miss him so much.  At least my heart is still functioning despite the changes in rapidity of the pump. 

Thanks to all for your unending support.  I think part of my not reacting in support group is because I have such great support from blog readers.  Times may change as we get nearer to death, but for now....I'm okay.

I'm married to a different man!

I woke up early again.  I laid in the bed thinking of my day yesterday.  I spent about 1.5 hours with Gary.  That is not enough to me. 


It is still awkward figuring out where I fit in there.  When I arrived, he and the other residents had just returned from a "field trip" to the Assisted Living Side of the facility (about 200 feet away from his area).  They had gone to a church service and all seemed to be in varying states of being.  Gary was wide awake and seemed to be more alert and stimulated.  Others were either in the same state or were starting to nap.


Gary was sitting in his new wheelchair and seemed comfortable and unaware of it.  I turned him a little sideways, kissed him and made small talk.  He kept reading the country on my blouse "Aruba".  I told him that we had visited Aruba once together and showed him the turtle bracelet I wear that he bought me there.  I asked if he remembered going there on a business trip with our then friend, Frank.  He said no but smiled when he touched the turtles.


During my time there, we loved on the unit dog Annie.  She is a six month old white puffy dog that has taken a liking to me.  As she pounced at Gary's feet to be picked up he said, "Up Diva Gerl!"  I explained that Diva Gerl was at my house and picked up Annie and let him snuggle with her.  After about 15 seconds, she lost interest and wiggled away.  He had a moment of a smile.


We watched part of a video on New Zealand.  Though he did not watch the TV, he repeated much of what he heard. Like many other times at our house, I kicked off my sandals and put my leg over his lap.  He instantly stopped shaking his leg and focused on my foot.  He rubbed it, separated my toes and massaged it lightly until I took it away.  He started shaking again.  I put the other foot in his lap.  Again, he stopped the body wrenching and focused on my foot.


We have to find a way to give him something to do tactilely more often. I could be wrong but it seems all that movement, uncontrolled would just wear on him.


When they started moving the residents around the room to seat them at their lunch tables I left.  It is awkward sitting next to him.  It is a horrible experience kissing him Goodbye and walking away. After leaving, I decided that I need to get over feeling awkward and sit next to him and be with him.  I have NOTHING better to do. I am the one with the problem and as a healthy individual and his wife, I have every power to overcome my created issue.


So, today, after I go to church, I will attempt to stay there all afternoon. I miss Gary so much.  But I also have to realize that the Gary I miss is not the Gary I visit.  He is different.  He still has feelings....I just have to look deeper.


On his chart yesterday I noticed that they have him labeled as Introverted and quiet.  Wow!  Certainly a far cry from the man of before the FTD.  He was outgoing and certainly never quiet.  But now...he is different.  I now love a very different man.


After leaving, I came home and did laundry and other stuff.  Our dog needed to go to the vet so we made a trip down the Anaheim Hills.  After 45 minutes in the waiting room, Diva Gerl was shaking just like Gary does.....its all nerves.
She will need an echocardiogram as she has developed a heart murmur and after all shots, treatments etc....I had spent almost $400.  In August, she will be boarded while I visit my family and friends in Virginia.  While there, she will have a medical treatment.  I have never before considered the cost when making decisions.


With Gary's housing and care costing around $6500 - $7000 per month, I have started living differently and making decisions based on "how long will the money last?"  We are okay for now, but it is certainly a concern.


If you have the wherewithal, buy your family member insurance that will cover long term care while they are still healthier.  The cost of long term care is astronomical if you do not have insurance and if you wait...it could be too late.


Thank God I have a good job and some savings.


 For years, Gary worked at home. I so miss being somewhere else and picking up the phone to call him and hearing his signature "Happy Day!" when he answered the phone.  For now, I wish you all a "Happy Day" from Gary and Ada.  I intend to make it one.

Holding hands with Gary.

Today while I was at work, I received an email from the coordinator at Gary's new home.  It read:
"Hi Ada,

Just wanted to let you know about a couple great moments we had with  Gary today.

Earlier today he was able to join in on a balance and strength building exercise class we held here at the community. This instructor is also our Zumba instructor and she loves to incorporate up beat fun music during her classes. Gary really seemed to enjoy himself and sang along to many of the songs she was playing during the class. At times he needed a little assistance with following the different exercise moves she was prompting the class to do but a care manager sat with him and at times would help him lift his arms up and guide the movements to follow the instructors example. For the most part he was able to follow along himself for a good chunk of the class and really seemed to enjoy the overall experience.

Also, this afternoon the residents were participating in a spelling bee activity. At first it seemed he many have some trouble participating in this so he sat listening and watching the other residents spell when prompted. Then we noticed after he would hear a word be given to a resident to spell, he would begin to quietly spell it to himself under his breath- he spelled the words quite quickly and was correct each time. We then encouraged him to participate in the spelling bee and he spelled each word he was given correctly.

Our staff is getting to know him better and better each day, and when small moments like this happen it really affirms why we all love what we do.

Just wanted to share these moments with you! Take care and have a great day/weekend J."

 

She did not have to send me this, but she did.  I am so glad they are including me and thinking of me while he is getting excellent care.

 

This evening, after work, I stopped by to visit during dinner.  He as sitting at a table waiting on his dinner of waffles, fruit and sausage.  I sat and watched from afar.  The aide put his food down (she did not know I was there) and said, "Here is your waffle and sausage Gary.  I cut them in strips so you can pick them up in your fingers."  He did not seem to understand at first, but picked up his sausage and took a bite.  He picked up his fork and tried to cut the waffle and got frustrated and like the last few months, he banged his fork against the bowl while trying to cut it.  I could not take it and decided to help him.  I stood beside him and cut his food into smaller bites and assisted him in eating the rest of his dinner.  I knew he was appreciative.

 

I talked to him and tried to engage him in conversation.  I asked him if his teeth felt better since he went to the dentist and got a cleaning yesterday.  He said yes and smiled so I could see his grin.

 

I looked at his face when he smiled.  It was different smile.  It was what I call a "courtesy smile" and he knew what he was doing.  So, I chose to sit and hold his hand. 

 

The entire time I was there, his legs were shaking as if tapping his foot to a song in 3/4 time.  Non-stop.  For two hours.  It is worse than it was before so I took the opportunity to try to communicate with the Nurse and/or the doctor.  The nurse introduced herself and immediately told me how much she and the staff love Gary.  We discussed his medication and his new schedule.  I indicated that his FTD has caused him to shake in the past few months but that his shaking is significantly worse. 

 

I was surprised that she knew enough of him that she said he shakes less when he has something to do with his hands.  She knew this and said she would share it with all the others.  I was concerned that his body will wear out faster if he continues at this pace.  All the staff responds with genuine concern.  I really don't think I could have chosen a better place for him. 

 

Tomorrow, I will visit him again.  I love him so much and miss him so desperately.  I not only miss the man with Dementia at home but I miss the man I married and lived with for 30 years. That man is still in his brain and his soul  but I am fearful that the personality I truly loved  will never be accessed again.  It is in safe keeping until he gets to heaven.