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 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 is a common dryness for him in winter.  The face?  NO clue.

After the hospice nurse, care manager and and wife examined the problem 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 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 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". 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 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. 

Sunday, November 20, 2016

The Grief Finally Came out....

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, November 18, 2016

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

Whirlwind week, for me at least.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, November 13, 2016

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, November 9, 2016

One day at a time

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

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

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

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

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

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

Wednesday, November 2, 2016

The Emotions of Gary's Birthday

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

and many others I have probably forgotten.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, October 30, 2016

Tremors take over the body.

The reality of what this disease is doing to my husband really hit me today.  I went to church and out to lunch with some people from church.  Usually I go straight to Gary's after church and make sure I get there in time to feed him.  Today, I thought I needed "me" time, so I took it. 

When I got to the living room at the Memory Unit, Gary was not in his usual place.  I must have looked puzzled and one of the caregivers said, "They are putting Gary to bed, he was sleepy." 

I went straight to his room and saw them putting him into bed.  It was reported that he was very clammy, sweaty and had experienced several of his tremor sessions.  I did notice that he was clammy yesterday but it was 80 degrees in the room and thought it normal.  Today, he has no fever but was extremely clammy to the touch.

They put him in his favorite T-shirt and put him to bed.  I said hello and puckered up.  Then he started shaking, tremoring and looking absolutely terrified.  I held his hand and told him I was with him.  After about three minutes of his entire body shaking, his neck going stiff and his arms tremoring...he stopped.  He looked at me as if to say, "What was THAT?" 

We called the nurse and we spent several hours watching him sleep, tremor to near convulsions and sweating.  I can honestly say that my heart is truly broken.  I never thought I could feel so all alone and empty.  I am absolutely convinced he feels even worse and cannot articulate his emotions.

As 2:00 came, I knew that the Pastor from Calvary Chapel would be there with other worshippers. Gary's room is very close to the worship and we could hear the singing.  I put a cool cloth on his head and wiped his brow to relax him.  He went to sleep hearing "Rock of Ages" and "Power in the Blood".  I sent a message out to ask the Pastor to come in and pray with Gary before he left.

He came in and read the Lord's Prayer and other scriptures.  Gary listened intently and said "amen" at the end.  Then, he had one of those life sucking tremors.  God was certainly represented in the room.  It was the only comfort I have felt all day.  He prayed for Gary with a depth I haven't felt before....perhaps because we needed it so bad.  God is good.

After a few hours, Gary was re-dressed and taken out to the living room for dinner.  He was no longer sweaty.  They are checking him for a UTI, diabetes, etc.  He was exhausted physically and me emotionally.

I walked away numb.  Ironically, a lady at church asked me if I ever cry or do I just smile all the time.   Well, today I cried as silently as one can.  I refuse to cry in front of Gary.  I refuse.  He has enough issues without seeing me upset.

As I drove away toward home, my thoughts turned to "what do I do?"  Do I turn around and go back and spend the night with him?  No, my only help in being there is to hold his hand.  I know he needs me but right now I am very weak.  I turned it over to GOD and drove home.  I can only anticipate what the next few days, weeks, months or even years will be like.  God is teaching me patience unlike any I've ever had.  I am not sure why...but honestly, I don't like it. 

I will call tonight before bedtime for a report.  My guess is they will adjust his medication and it will slow the tremors.  He brain is doing exactly as predicted by the experts.  It is effecting various systems in the body.  I have to remember there is no cure and that someday this will end. Heaven help us all!

Saturday, October 29, 2016

Ada, how have you been?

"Ada, how have you been?"  A call came from one of Gary's former business contacts and I tried to explain. I know that I have talked to him in the last year but have no recollection of what he knew.  I explained that Gary is now in Memory Care and probably has no knowledge nor memory of him. 

Most people have no connection to our current reality.  I found it interesting trying to explain Frontotemporal Degeneration and what it has done to Gary.  For those who knew him before, even by telephone, it is difficult to grasp the disability.

Today I made to the Reminiscence  by 10:00 am and found Gary sitting in his wheelchair in the main living area grasping a massage ball and chewing on the plastic handle.  His eyes were tight shut but he was wide awake.  I kissed him hello and was confident in his response that he knew I was there.

I held his hand for awhile and then took him into his room to clip his finger nails and trim his beard.  As I stood over him to clip his moustache, he opened his eyes and looked at me with that blank stare that only comes from one whose brain is somewhere else.  He kept saying, "Ada Mae.  Diva Gerl (our dog). "  He has no sentence tied to the pronouncement but he still knows our names.  I told him that Diva Gerl as at home. THen, I realized that about a month ago, I did bring her here and he was sitting in the exact same place where I had presented her to to his bed.  There had to be some recollection on his part.  Perhaps I should bring her back? 

His face seemed oily and I knew he would hate that.  I washed his face and he reiterated that it felt good. After finishing our grooming, we went back to the living area where the Care Manager was meeting with the residents and discussing current events. Gary had his eyes tight shut but was listening and repeating different points that he heard.  I sat next to him and held his arm and hand.  He still squeezes my hands and kisses the back of my hand.

I stayed for three hours including feeding him a healthy lunch.  After lunch, I took him back to his room where his trimmer was now charged.  I take pride in keeping his beard as he liked it.  We cleaned up and I moved him back to the living room. 

I parked his chair and kissed him goodbye.  His 68th birthday is this Wednesday.  What should I buy him?  I looked at Toys R Us for things he can play with or do with his hands.....could not find the right item.  I will continue to look.  Just think, in years past I would buy him a Seamaster Watch or we would celebrate with a trip to the mountains.  As a result of FTD, he will get a card and probably not be aware that he is passing a milestone.  Will it be his last?  Only GOD knows.

So, the man that called this evening to check in says that he will fly his private plane down in a few weeks to meet Gary.  Their relationship was all over the phone and he knows he has waited too long to meet the "real Gary."  My sense is, he won't come.  People have a tendency to abandon the feeble......and that is what Gary is now.

I love him with all my he is a few years back.....

Here he is today...