"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......

The Miracle of Christmas!

Merry Christmas Eve!


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


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


On the way to his "Happy Place", I stopped and bought Gary one of his favorite drinks.  A Caramel Frappacino. 

He loved it. For over an hour, he sipped, slurped and gulped.  I was happy that I could give him something different than his daily routine.

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

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

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

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

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

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

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

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

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

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

He was still in his room sleeping and I moved a chair close to him and put my feet up on the bed and waited for either him to awaken or for an angel to come and get him ready for dinner.

He quietly grabbed my foot and held on tight.  His brow was furled and I asked him to unfurl his brow and stroked his forehead.  He relaxed and went to sleep while holding my foot.  We sat there for about half an hour and I realized the importance of quiet time.  I loved this precious moment.

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

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

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

God Bless us Everyone.

I just started watching "Its a Wonderful Life". 

 





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

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

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

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

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

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

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

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

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

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

What does the future hold for me?

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

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

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

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

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

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

Annie the unit dog came in from outside and jumped on my lap and smothered me with kisses.  She is a sweet little dog.  She jumped over on Gary's lap and licked his face.  He had a glimmer of a smile....then it faded. She stood on the sofa next to me and kept looking at the television and then back at Gary.  It was almost as if she was telling him to watch the movie. 

Some time passed and I knew despite the hand holding and partial awareness of Gary, I had to go home.  I kissed him goodbye and told him that I would be back tomorrow in time for the morning sing-a-long.  He said that he loved me too and I left. 

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

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

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.  

I don't wish Dementia on any family.

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

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

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

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

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

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

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

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

I don't wish Dementia on any family.

I know Gary is "Terminal"

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


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


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


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