"Ms. Ada, Gary cried listening to Pink Floyd."

I went away for Christmas and visited my daughter's other family.  They accepted me with open arms and I am grateful for the time together and for the fact that I was not alone.

I visited Gary today.  He was sitting in the sun room at the memory care unit underneath an exquisite tie dyed blanket.  It fit his original personality perfectly.  I asked one of the caregivers from whence it came and she said they got all new blankets and everyone knew immediately this was the blanket for Gary.  In fact, she told me that despite protests from the other residents that on Christmas she played a Pink Floyd c.d. for him.  She said, "Ms. Ada, Gary cried listening to Pink Floyd."  So, after trimming his mustache and nails, I played some great rock classics for him.  He promptly fell asleep.  As I sat next to him, I felt a loss.....not so much for my husband but for the man who could entertain a room and brighten everyone's day.  His eyes have no life left.  I saw no tears.  I cried no tears.  

Various people who loved him read this blog and contact me privately to ask about services.  They too know he is slipping quickly.   

Meanwhile, I live life.  The family is headed to Disneyland on Saturday.  

Familiar Faces Fading

I drew a deep breath as I walked into the Memory Unit where my husband Gary lives.  Nothing in particular caused the stirring in my soul but I felt the need to actively breathe.  I had not been there in over a week and did not know what to expect. I never do.

He was seated at the dinner table waiting on his food.  Well, he was not waiting nor did he have any visible awareness of his surroundings nor existence.  I kissed him on the head and sat next to him.  He was leaning over so far due to his atrophy that kissing him on his lips is no longer a viable idea.  The top of his head will have to do.

His eyes were open.  When his juice and water came, I fed it to him with a spoon.  The consistency is that of jello.  He "drank" most of it. What did not go in his mouth landed on his bib.  The angle created by his spinal atrophy makes it difficult to get anything in his mouth.

The food came and I struggled through dinner.

 

 

He ate willingly as I fed him with a fork.  He still chews and swallows.  His eyes water constantly.  I read somewhere that tearing can be caused by slight aspiration.  There were no signs of that today....just the tearing.

 

 

As I looked around the room, I looked for familiar faces.  Of the 24 patients on the unit, very few are the original residents there when Gary moved in to the unit.  Most were either moved or have died.  As I sat there watching the varying levels of decline, I felt a remarked heaviness.  I look at Gary differently now.  I no longer feel "lovey-dovey love" rather a "I feel sorry for him love".  

 

My husband is gone in every way but physical. I hope he goes soon.  I have accepted it.  My sadness now is not so much for our departed relationship but that the disease takes away all life. It is so unfair. I left him with another kiss on the head and told him that I would see him after Christmas.  Maybe....

 

Today, I spoke to a nursing class at my University about the importance of Advanced Directives.  I am morphing away from the caregiver role but hopefully I can draw on my years of experience to assist others in some way. I was able to talk about Gary's illness, the deaths of my father and sister without any drama or emotion. 

 

 

 

 



I am okay!

For the past few weeks, I have been waking up in the early morning around 2 or 3 o'clock...no reason other than what I call Monkey Mind. Today's awakening happened at 1:58 am. I am currently sitting in my bed typing. 

These moments give one a quiet time to think, reminisce, contemplate and dream.  I often think of Gary in these times but not nearly as much since so much time has passed since he went to Memory Care.  I don't miss him here at home because I bought a house and moved since he was admitted.  He has never been here.  I have found distractions to take place of the hours I used to spend care giving.

I stopped by the pharmacy yesterday to purchase a new beard and mustache trimmer.  His old one was not working properly and he has been looking rather sloppy. In fact, some days he has pureed food stuck in his mustache.  Yuk.  To be honest, I did not buy a new trimmer before yesterday because I kept thinking he was going to die.  I didn't see the point.  How selfish of me.  

So, I bought a new one and proceeded to the visit.  He was awake and in the living room of the unit.  He was watching the other residents in a planned activity of batting each other with "noodles" or Styrofoam sticks.  I took him in his room and used the new tool.  He looked much better and more like my former Gary.

There is a void in his eyes that is bigger and deeper than the immediate past.  As many of you know, I have really struggled and belabored in the past few months wondering why he is still hanging out here on Planet Earth.

This past week, I had some help from our CPA and together, we figured it out....quite by accident.  For 10 years, this woman has prepared our taxes and has seen the height and depth of Gary's business ventures.  I asked her what my tax hit was going to be related to a recent transaction because I was expecting heavy capital gains.  I knew it could be steep and I wanted to properly plan for April 15.

She asked many questions, prodded the facts and figures and had a revelation.  She indicated that we had a significant investment loss a few years back that we could never claim as we did not have the income to offset it.  We can use it this year and there will be no significant tax hit.  She also said that had Gary died already, I would not have been able to use 50% of it.  All things considered, Gary is saving me six figures.  She said to me, "Ada, that is why he is still here.  You know Gary, he was always finding loopholes and he just gave you another one!"

At that moment, while reveling in the truth, I felt the most quiet, contented peace.  I have continued to feel it all week.  The angst of why Gary is hanging on no longer bothers me.  It feels good to be free of that disturbing wonder.

So, today at church I will be lighting the Advent Candle with another lady from the congregation.  Another chapter of my life on the new adventure of being a "single" begins. 

I am okay! 

Not sure what this means.....

I walked into my Gary's Memory Unit on Saturday and was greeted by a caregiver.....well, I am always greeted by one of them as they have to let visitors in the unit by using a locking code.  She quickly told me that Gary had a new roommate. I asked about his abilities and Memory Status so I know how to act while in the room.  

I walked past the living area where I knew Gary was sitting and went back to his room.  Outside his room was a pants rack with Gary's blazer and dress slacks.  This was odd.  Most clothing that hangs in that hallway is used for reminiscing decor.  Specifically, women's hats, dress up gowns, etc.
I found it strange that Gary is still alive but his clothes had been entered into the inventory of memory joggers.  I said nothing to anyone and went back to say hi to my non-emotional husband. 

One of the angels was feeding him his thickened water with a spoon.  He has water spilled down his t-shirt and also water coagulated in his mustache.  She arose and knew that I would take over giving him water.  I retrieved a straw and he promptly drank it all quickly.  For some reason, he drinks it that way for me but when one of them tries, he chews the straw.  Go figure.

It seems like many of my visits now are to supplement the care-giving done by the Unit and by Hospice.  I trimmed his nails, mustache and used a q-tip to remove an excessive amount of ear wax from his ears.  He did not seem to notice or care about any of this.  As I perform these actions, I talk to him the whole time.  I call him by his nicknames "Baberoon, Garball, etc." If he has any recollections, at least he knows that someone who loved him is there.  He often grabs my hand and will not let go.

He often has a tear roll down his cheek.  I wipe it away and tell him I love him.  That is all I can do.

He fell asleep and I left.  I thought of the deaths that have occurred since he started living there a year and a half ago. So many lives are impacted by this horrible disease.  My life has changed significantly and evolved....I have to honestly say my life is better than it has been in years.  

I am blessed to have had a wonderful marriage for 32 years.  I am ready to see what is next for me as Gary moves toward going home to Heaven.  

He is here in Spirit.

As many of you know, my husband lives in a Memory Care Unit under the care of fantastic caregivers/angels and of course, Hospice.  

We are all shocked that he is still alive.  Here he is yesterday right before falling asleep during a Frank Sinatra sing-a-long.  Frankly, had I not left, I too would have fallen asleep.

He held my hand as he fell asleep.

It is amazing to me that all the folks who live in the unit with him have some form of Alzheimer's or Dementia.  To look at some, they seem perfectly "Normal" until they talk.  Others look afflicted, like Gary.  I do not understand why this disease exists.  It serves no purpose other than to give caregivers jobs and to support vendors who have built a business around it.  Then, there are the families.

On Thanksgiving, I watched families come and go.  Some handle the disease well....others have no concept of the depth of it due to denial.  I watched one son show pictures of family to him (like I've done many times) hoping for some shred of recognition.  The act is not for the patient but rather the loved one.  The patient doesn't give a flip. We all hold on to some hope that recognition will be there for some short moment.  I like to think I know better and that Gary is gone and will not "pop" back.  But the truth is....I still go there to visit the body that is Gary.  Not the personality.

I bought a new home a few months back and decided to buy some new Christmas decorations and decorate the last two days.  So many memories flooded my mind about Christmases past with Gary.  They were all charming memories.  We decided years ago to not buy each other gifts at Christmas but rather make memories throughout the year.  Ironically, only I have the memories. He will never step foot in this house that I now call home.  

When I first met Gary in 1985, he drove a VW Camper Van.  My the good times we had in it...before and after marriage.  It died a slow, rusty death in 1988.  Somehow, those who knew him back then tend to think of him as an old hippie turned "yuppie" turned entrepreneur turned investor turned dementia patient.  So, yesterday as I was checking out the new Christmas decorations, I saw a large VW van figurine with a Christmas tree on top right next to the cashier...it was meant for me....  I had to buy it....

Later, when I had finished all decorations, I found the perfect spot for the van.  On the front porch, at the entrance of the home.  While he will never come in that door, he is here in spirit.

Merry Christmas season, Gary.

Missed Call: Hospice Nurse Betty

While I keep my phone with me most of the time, due to circumstances I don't always have the ringer activated. Such was the case yesterday.  During a meeting around 2:00, I glanced down and saw the following:

Missed Call

Nurse Betty

Hospice

My heart always leaps when I get a call from anyone at Hospice, even the music therapist.  After all, its never a call to give GOOD news....

I read the voice to text version of her email.  Since my version of this application is not perfected, all I could understand from the message was that nothing was an emergency but morphine was also in the sentence....the two don't necessarily go together, so scratching my head, I called Nurse Betty.

She promptly answered my call and explained that Hospice had been called in the middle of the night because Gary was "screaming in pain".  Since he is non-verbal, the situation was rather unusual and of course, no one could detect his pain.  So, they administered morphine and he slept the rest of the night.  

She was calling me to let me know that he was better and had eaten all his breakfast and lunch.  She was acting as if I had known about the events from the night before.....no one had called me.  I was livid.  Then again, I could not have done anything but worry.  

I expressed my discontent with the situation.  We determined that the last time he was "screaming" was two years ago related to arthritis in his hips.  They had stopped the supplement which aided his pain so I told her I would bring some over that afternoon.

Fast forward past the trip to the Emergency Room to determine if my ankle was broken (its a sprain) and past the trip to Sprouts Grocery to pick up the MSM promised to Nurse Betty.  I arrived at Sunrise to find Gary being wheeled out of his room, freshly groomed and up for dinner after a peaceful afternoon nap.  I guess morphine helped with the peaceful part. 

I rolled him over to the table and hugged on him.  His eyes were wide and showed no signs of immediate distress.  I sought out the Manager to inquire about the night before and the events that transpired.  She had been called at 3:30 am by one of the caregiver/angels.  She reported that while walking past Gary's room she heard him making a very loud noise that was described as a cross between a groan and clearing his throat. He often makes a noise while eating that has a lower volume than described here. It was determined that he was in pain and they ordered the morphine.   

I expressed that I was concerned that no one called me.  Was it the Unit's responsibility or Hospice?  I didn't care but asked to be called in the future.

I returned to his side and fed him dinner.  During the dinner, he again started making this noise.  It was a gutteral, ear piercing sound.  I cannot truly describe it but the brain is led to think he is either choking, in pain or distressed.  He was breathing so I knew it was not choking.  The son and daughter of one of the other residents were also sitting at the table.  Everyone stays so calm as we know the events that occur at any moment of days in the Memory Unit could be pivotal in all their lives.  The son, a man about my age, looked at Gary with compassion and a mix of horror.  

We carried on our conversations as I rubbed Gary's back, neck and head.  It was if he was trying to tell me something in his noises.  I imagined that the noise was him trying to find his voice.  I asked him what he was trying to say.  Of course, he could say nothing.  His eyes were full of torture while at the same time, completely void of feeling...it is difficult to describe if one has never seen the Dementia stare.

I will never know what he was thinking or trying to tell us.  As one of the angels walked back and forth taking care of other residents, his eyes followed her.  Back and forth.  He was watching her....I have no doubt.  This is a behavior not exhibited by him in many months.  He looked so desperate even though his noises had stopped.  As he began to fall asleep I dismissed myself from the table and we all said our "so longs" until Thursday's Thanksgiving lunch.  We all assume that our family members will still be alive two days from now.  

Hospice.  Morphine.  Screaming.  Fear.  

Those are all terms that are a real part of Gary's life.  It is pitiful I am coping.  I await the next phase of his death and of my life.  They are polar opposite in their direction.

Am I really ready for his death?

Sometimes life has a way of smacking us across the face and behind the head and kick us in the shins.....other times, it quietly taps us on the shoulder and whispers in our ears "Hey, you aren't paying attention.  Wake up."


This year I have experienced the smacks, kicks and pain of the following:
My father died in February
My sister died a week later
I totaled my car and could have died
I bought a house that has had "issues"
I had a cancer scare
I had surgery
My car has been in the shop for three weeks now....
and.....my husband is in hospice with Frontotemporal Degeneration.


All those things have kept me busy this year along with a few other distractions that won't be listed here....


However, this morning, I opened Facebook and one of the caregivers from a FTD group has posted the link to this Ted Talk.


https://www.ted.com/talks/beth_malone_how_my_dad_s_dementia_changed_my_idea_of_death_and_life?utm_source=facebook.com&utm_medium=social&utm_campaign=tedspread--b


I was in my bed enjoying my morning coffee when I clicked on the video.  It starts with a young woman saying that her father has FTD and she wants to kill him.  She was serious.  Well, watch the video and you will see why all those of us who care for FTD patients have felt the same way at one point or another. 


As her story unfolded, I started feeling her angst.  I have lived it.  She references a time when after she thought her father's personality and spirit had left his body and remaining was a shell of the man.  This is when she considers "getting him out of that body".  Then something happens that makes her realize that his spirit is still connected to his body and she commits to continuing visiting and watching him "live".


That story was the quiet "tapping on the shoulder" that I referenced above in the opening paragraph.  It said to me that despite the stare, lack of response and gone-ness of my husband's personality that he is still there.  I see small signs of it every so often. Rarely. I have ignored them so its easier to let go.  Its easier to rationalize why I don't go there and sit with him very often. 


Soon, he will be gone for good.  When the spirit leaves the body and he goes to be with his Lord, what will I do?  What will I feel?  Recently and up to this morning, I thought I was ready for his death.  But after watching that powerful talk on YouTube, I am no so sure. 

Alone for Thanksgiving

Tonight is the Thanksgiving Dinner at the Assisted Living Facility where my husband Gary lives.  For the second time, I will go.  Frankly, I don't want to go.  Things have changed so much since we moved him there. 

Last year at this time, he could still talk even though he was repeating what he heard.  His voice was still audible but weak. Now, if he does mouth anything it is inaudible and ties to little.

I was in his midst on Tuesday. When I prepared to leave, I put my face next to his and said our trademark "Love my babes!" which was our way of saying that we love each other.  His lips slowly parted and he mouthed with no sound "Love my babes."

I have no doubt in my mind that he felt something or remembered some instance of having heard this before that moment.  I will take it as a win. 

As I arrive tonight, I know that the food will be excellent and I will see family members of other residents that I haven't seen in a while.  All the families are at different places emotionally.  It is interesting to be ahead of them in the progression of the disease and to watch them go through it.  My supposition is that there are other families who are ahead of me in their journey and are watching me with the same eye.  There is a hell and a magic in not knowing what is happening to us next.

I used to go to the Memory Unit many times a week and stay an inordinate amount of time.  I don't do this anymore.  I don't want to go and sit and watch Gary sleep. 

For the first time this year at Thanksgiving, I have no plans.  I have to work up to the holiday and have chosen not to go with Heather and Xander on their holiday adventure.  I made a comment to a friend yesterday that I wasn't sure how I felt about being alone on Thanksgiving and that I didn't think I would like it.  Rather than let me stew in my "misery" the response was a quiet "How was your experience in Mexico?"

The reference was a trip I made last spring to Mexico by myself.  I had a wonderful time because I had the right attitude and was just accepting of the adventures I found.  So, my countenance immediately changed and I am looking on the upcoming holiday as an opportunity.  In fact, the truth might be that for some time, I may be alone in my life walk.  It is important that I don't lose myself in this phase of my life.  

Alzheimer's walk speech

Yesterday, I was one of the kick off speakers at the Alzheimer's Orange County Fundraising Walk a Angel's Stadium in Anaheim California.  I had three minutes to share my "story". 

It was exciting to speak in front of a group who all feel the same pain.  The pain of watching a family member die from such a tragic disease.

Today, I went to visit Gary.  He was more awake than I've seen him in months.  He actually moved his hand toward me and grabbed my hand.  He would not let go unless I pried his hands from mine while I fed him.  As I sat at a table with other Memory Care residents and their adult children, I realized that I am the only young person represented there who is married to a resident.  The rest are all children of patients.  I try desperately to not be so happy.  I try to be upbeat and make them all happy. 

I asked one of the angels to tell me what he weighs now.  145 pounds.  When he moved in to the unit in June of 2016 he weighed 175 pounds.

As I fed Gary, he seemed to follow me.  I got up at one point to get him a tissue, his eyes followed me.  This was new.  He needed a tissue because his nose was running and then I realized he was crying.  I have no way of knowing why.  That is torture.

As I decided to leave, I hugged him and kissed on him and told him that I would be back for the Thanksgiving meal.  I felt guilty to leave but had things to do for my normal life. As I walked toward the door, his eyes followed me. The guilt killed me.  I went back and kissed on him and said, "Gary, I am leaving now.  I will be back on Thursday for the dinner.  I love you.  If you need to go see Jesus before I get back, its okay."  Then, I felt guilty for saying that.

So many people read my blog and make comments about what a good and loyal wife I am.  Bullshit.  I feel so guilty when people think I am a good wife.  I might go visit once a week but the truth is:  I want a new life. I want a new love.  I want to be appreciated and feel valuable again.  I am a 54 year old woman who is vibrant and deserving of better.  If that is selfish, I am sorry.  I am not a saint.  I want love.  I want sex and I want a life beyond the prison of Dementia. I want hope for the future.

I digress,  So, back to saying good bye to Gary today. I left him at the dinner table. As I reflected on the day, I recall that I am probably one of the senior "caregivers" for people on the unit.  Gary has outlived a lot of the folks there.  I am close to running out of money to keep him there.  I often think that I will run out of money on the day he dies.  I hope so, as I don't know what to do beyond that day. 

I need your help!!

I need your help!


Next Saturday is the Alzheimer's Orange County Fundraiser Walk at Angel's Stadium in Anaheim, California.  I have been asked to spend 3-4 minutes and tell my story about FTD. Wrap your head around that one for a minute.  Nearly 10 years of hell summed up in 3 -4 minutes....in front of thousands.


I don't have a problem with Public Speaking.  I simply don't know which subject as a caregiver would be the most impactful.  So, all you readers who have followed this blog, please leave me a message at the bottom of this post and tell me:  if you were in the audience, what is most important for you to hear?  Is it a particular story?  A concept?  A coping mechanism?

Gary's 69 birthday!

Gary's birthday is tomorrow, November 2.  He will be 69 years old.  Unless something drastic happens today, he will make it to tomorrow.


It is so odd talking to people about him.  For example, in the grocery store the other day, a vendor mentioned that she liked my bracelet.  I told her it was a bracelet my husband had designed for our 15th wedding anniversary.  Of course a conversation started and I shared that he is in Hospice.  Her response was "Oh my, honey, I hope he lives another 20 years."  Looking horrified I told her that we are hoping for a speedy ending due to the situation.  Her next response was "Then, I hope Jesus takes him home soon."  I replied, "Me, too."


To some, feelings like these seem horrible.  To others who have known someone in this situation, it is normal.  I am nearly done grieving.  The only thing left in me regarding this whole situation is the Celebration of Life, cremation and starting over again.  Like a friend said recently, "You have grieved and now you are not looking forward to having to do it again for others."  Exactly. 


I will go there tomorrow and wish him a Happy Birthday.  I thought last year's birthday would be the last.  We were all wrong.  I know in my heart that he has no awareness of the day nor the year nor the occasion.  For all within the sound of my words, please pray for his birthday and a safe passage to Heaven.

This was Gary several years ago sailing past Pac Bell Stadium in San Francisco. 

He's Still Here.....

I don't know how or why, but Gary is still among the living.  Today, I visited him at his Memory Care Unit.  He was seated with Janette in the open living area.  I have been around Janette for 1.5 years....apparently she is now blind or her eyesight is failing....I hate that these people are dying and breaking down.

One of the caregivers who has been there since we first moved him in was there and had been instructed to read to Gary.  I sat down to see what was going on and incredibly, she started reading to him from a paper that HE wrote 10 years ago about his childhood and the remainder of his life. I had forgotten that I gave them his autobiography when he moved in to the unit.  She spent about 40 minutes reading aloud about his life.  All stories I have heard a thousand times.  I supplemented information to each story.  

At the end, I asked her what her objective was in reading to him.  She said that her directions were to read to him and then annotate the results.  She opened the book and wrote "Patient had no response."  I am not sure what they thought would be accomplished.....Gary was oblivious. I suffered through the stories again.....but at the same time, they were glorious.  

To add to the story....at least three of the caregivers have given notice or are looking for another job. They are either underpaid or moving on....it is sad.  Why is it that in America, we pay the most important people the less? Firefighters.  Police. Caregivers. 

Bottom line:  Gary is still alive.The doctors had said that he would not make it till August 1.  Today is October 28.

Reagan Library Meltdown

So, I disappeared for a few days and drove up Highway One to see the Hearst Castle and The Ronald Reagan Presidential Library. 

I thoroughly enjoyed my time away and found a lot of rest and peace of mind, temporary though it was.  I seemed to be able to forget that I had a husband near death in Memory Care....that is, until I got to the part of the Reagan Library where a display held the letter that Ronald Reagan wrote to the American people upon being diagnosed with Alzheimer's.  As I stood there, I read his words and imagined the torture that he and Nancy must have endured by simply learning of the disease....much less the next years of their life. 

Here is the letter as found in the Reagan Library:

"Nov. 5, 1994
My Fellow Americans,
I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer's Disease.
Upon learning this news, Nancy and I had to decide whether as private citizens we would keep this a private matter or whether we would make this news known in a public way.
In the past Nancy suffered from breast cancer and I had my cancer surgeries. We found through our open disclosures we were able to raise public awareness. We were happy that as a result many more people underwent testing.
They were treated in early stages and able to return to normal, healthy lives.
So now, we feel it is important to share it with you. In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it.
At the moment I feel just fine. I intend to live the remainder of the years God gives me on this earth doing the things I have always done. I will continue to share life's journey with my beloved Nancy and my family. I plan to enjoy the great outdoors and stay in touch with my friends and supporters.
Unfortunately, as Alzheimer's Disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes I am confident that with your help she will face it with faith and courage.
In closing let me thank you, the American people for giving me the great honor of allowing me to serve as your President. When the Lord calls me home, whenever that may be, I will leave with the greatest love for this country of ours and eternal optimism for its future.
I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead.
Thank you, my friends. May God always bless you.
Sincerely,
Ronald Reagan"

As I stood there alone, I began to cry.  Hot, small tears flowed down my cheeks. All I could do was walk off and do my best to squelch the emotion.

The truth is, every journey is individual and different.  Even having gone through the Dementia diagnosis and years of hell, no one can imagine what another family will encounter.  I was so angry that the disease (which has no economic, sex or racial filter) can devastate such a great world leader or anyone else for that matter.  Why did it devastate my husband? 

For those out there who are still living with the disease or care giving for one who is....I can only wish you peace and a pain-free end to the suffering.  I wish for it everyday.

If you can't afford long term care insurance, you can't afford long term care!

Tonight, I will be on vacation.  I am escaping Anaheim, my job, my responsibilities and hopefully, my thoughts for a few days.  I have done all I can do for now to take care of things while I'm gone.  Don't ask where I'm going....just trust that it is away and near the ocean.

I visited Gary on Saturday.  I fed him his pureed meal of chicken, carrots and potatoes.  I tasted it.  Not too bad.....apparently it is real food and it is just blended.  He ate every bit.

When I arrived, he was sitting in a reclined position with headphones on his head and his eyes tight shut.  The music playing was a Rock Pandora station....Grateful Dead, Pink Floyd, Credence Clearwater, etc.  I sat there for about 1/2 an hour and watched him.  He showed no reaction what-so-ever. When the food came, we stopped the music and he opened his eyes. 

I was thinking.  I can escape for short periods of time.  His only remaining escape from anything unpleasant is to die.  I talked to the manager of the unit and told her I was going to be a few hours away and to call me if needed.  She said that "we shouldn't need to....he's not there yet."  She also confirmed what I have always been told.  He will probably die from pneumonia or asphyxiation. 

Front temporal Degeneration is a cruel disease. It has no selection process for who gets it.  It could be anyone.

Financially, I am close to being out of resources to pay for his care.  Very close.  It is so scary. 

The advice I would give families is to get long term care insurance while you can afford it.  If you can't afford long term care insurance, you can't afford long term care.  Think about it. 

Another day in the Life of Dementia

I'm really tired of being a caregiver, even though I'm not really a caregiver anymore.  Gary lives in Memory Care so I am done with the day-to-day issues of incontinence, medication, dressing, feeding, cleaning, etc.  I only pay for it all and do my best to get through each day knowing that he is about to die.

Today, he was sitting in a more reclined position due to his spinal atrophy.  He seemed more comfortable somehow.  I rolled him into his room and just looked at him.  He was wide eyed and his right eye had mucus around it.  I put drops in his eyes and attempted to clean it.  An eyelash was the culprit.  Imagine for a moment having an eyelash stuck in your eye and being unable to think through trying to get it out or even being able to communicate that you are uncomfortable.  A mere eyelash...I can't imagine something more major. 

I trimmed his mustache really short and eliminated all the food debris dried in it from breakfast.  Apparently no one wiped him off after his newly pureed breakfast.  I trimmed his eyebrows, ears, nose and fingernails.  His hair was perfectly combed.  

I looked straight into his eyes and talked to him as if he was totally there.  I told him that I love him but that I am tired and that I know he is.  He started making a half hacking/half coughing noise.  His face contorted and he started to cry.  I started to cry because I didn't know why he was crying. As quickly as he started, he stopped.  Me, too.

I told him that I will be okay if he wants to check out of this world.  No visible response.  I looked at him to see that if I never see him again alive, would I like how he looks for his deathbed.  He is not the man of yesteryear.  He is old and sick now.  Such a shame.  I look forward to him being restored to his old self.  It can't come too soon. 

Gary is not Swallowing Very Well.

As I walked though the grocery acquiring vegetables to accompany my evening meal, the phone rang.  It was one of the Hospice Nurses.  The heart always skips a beat when I see those names pop up on the screen.  Before caller I.D., I would have just answered the phone and dealt with the situation with no drama. Now, I have no choice but to get the dramatic preview.

I answered and heard the Nurse tell me that the new Care Manager was concerned that Gary is no longer swallowing his food properly and that as of that day, they had put his diet to "pureed" food. Bam, there it was.  The next step in his decline. I had known it was coming.

I said a low-level "thank you" and the nurse asked what was wrong.  I went off on her....bless her heart.  In the produce section of the store, I started a tirade that included:

"Why do you people have me go and buy pillows and bring them to there and then you don't put an order in the computer for them to be used?  What do you mean you are now ordering him heel cups instead of pillows?  Couldn't you have told me that before I went and bought new pillows?  Don't you realize I am running out of resources? Don't you realize I am done? "

"What do you mean you are done?"  said the nurse.

"I mean, the man in that wheelchair is not my husband and I'm tired of living like this and I know he is.  I'm just done!" The woman standing next to me buying cucumbers was horrified. 

"Would you like to me have someone call you so you can talk this through?'  

"(*&^4%& - expletive.... no,No, I"ll be fine.  I just don't know how much longer I can do this.  I'll be fine when its over."

"Well, he is declining quickly and now rarely sits up and is bent over his chair.  The lack  of swallowing is the next step."

Yes, I know.  If felt really bad that I had attacked this poor woman.  The last few days are the first that my personality has shown the severe wear and tear of the last few years.  I went home, had a glass of wine, talked to a friend and slept like a baby.

Sewage spill and Dementia!

One of the caregivers (angel) at Gary's Memory Unit has been there for quite some time.  She only works part time now as she has started another career.  In talking with her yesterday while we were feeding Gary and Nancy, she indicated that she loves the residents so much that she can't bear not working there.  Then she mentioned that one of the residents had died earlier in the month.....I didn't miss her not being there.  I guess I don't pay as close attention as I used to do.  I felt a sadness for the angel and a great joy that the resident who passed on will never be in anguish or confusion again.

Then, I looked at Gary.  He was trying to say something but could only muster a grunting noise.  I told the angel about him saying words so clearly earlier in the week.  She also indicated that she has not heard his voice in months.

His eye was watering so I put some drops in it trying to wash it out.  He cannot put his head backward anymore so it was difficult.  I think I made a difference.

There is a special agony that exists when I drive into the garage at the Unit.  I never know what I'm going to find once I enter.  Usually, it is nothing unusual, but one day I will walk in to either find my husband very ill or not there at all.  What will I do with the furniture in his room?  What will I do with his clothes?  I know.....charity.

Yesterday, as I left the unit, I decided to stop by the bathroom before I ran my errands.  The toilet would not flush.  I reported it to the desk attendant.  I walked down to the garage and heard a loud leak, more of a pouring of water.  After looking around, I saw what appeared to be a broken pipe in the ceiling of the garage pouring water down into the garage.  I went back upstairs to also report this near flooding situation.  

I went back downstairs to leave and realized the distinct smell of sewage.  No wonder the toilet wouldn't flush....there was a break in the line.  Another visitor was going upstairs so I told her to tell the attendant about the sewage.  As I drove off, I realized the irony of the situation.  Dementia has created so much crap in the lives of Gary and Ada that it is appropriate that a sewage line would break in front of me while visiting him.  An appropriate symbol for a shitty disease.  When will it be over?

Beef Stir Fry!

Months after Gary has gone silent and not spoken, yesterday he surprised us all and said three words aloud.  It was nice to hear his voice.

For quite some time, Gary would only whisper and repeat words that he heard.  If there was any original thought, we only had one shot at hearing it.  While feeding him his soup last night, there was a grandson of one of the residents sitting next to Gary feeding his grandmother.  The grandson had seen the menu for the Assisted Living Side of the house when he came in and was telling his grandmother that the residents were having Beef Pot Pie for dinner.  One of the caregivers overheard and corrected him by saying "No, they are having Beef Stir Fry."  The grandson told his grandmother, "I'm sorry, you are having Beef Stir Fry."


Without hesitation, Gary said in a loud voice "Beef Stir Fry."  I was shocked.  He quietly went back into his shell and said nothing else.  He was sitting up straight today with his eyes wide open.  By the end of the meal, he was asleep.

The daily differences in his progression into the darkness of the disease is amazing.

Restored....only in Heaven!

Gary sleeping in the quiet room at Memory Care.

Upon arriving at Gary's Memory Unit today, I walked into the main living area and one of the caregivers told me that she had just arrived and had not seen Gary yet today.  I went to his room and found it empty.  Where was he?

I found him in the Quiet Room with the lights down, waterfall on and aromatherapy machine misting some delightful aroma.  He was sound asleep.  I touched him and he did not stir.  I sat with him for quite a while and just held his hand.

After about a half hour, his eyes opened a little and I moved him into his room so I could trim his fingernails and trim his mustache.  His beard has now been totally shaved. He jerked a little when I turned on the electric clippers and seemed scared.  I explained to him what I was doing and whether or not he understood, he settled down. 

It was so odd touching his arms and shoulders as I was trimming him. I have touched his body for 32 years and the man I touched today felt very different.  His muscles and shape are gone.  He feels bony and weak.  A far cry from the man who could backpack and carry a 85 pound pack.

I looked him straight in the eye as I rubbed his newly cut hair back across his head.  I told him that I love him very much.  For the first time in months, he either repeated or responded a whispered "I love you."  I don't know whether it was a repeat or a response but my heart moved a little.  

Dementia, or in this case, FTD is one of the cruelest diseases I can imagine.  It steals the life and heart out of families. 

At these times, I can't help but wish for a restored Gary. Only in Heaven Ada....only in Heaven.

Gary and Ada on our last trip to Costa Rica about 7 years ago.

He's Declining

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

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

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

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

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

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

Melancholy fills my heart on so many levels. 

32nd anniversary thoughts

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

Dementia is killing him everyday.

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

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

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

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

SO for now, I will say Happy Anniversary Gary!

My New Home Without Gary

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

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

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

He is still alive.  He is declining.  He is now on mechanical food but I'm guessing soon he will be put on a puree diet since he often falls asleep mid-chew.  I've always cut his beard and moustache since he moved to the Memory Unit.  I missed last week due to the move....so, one of the caregivers tried to trim it.  As you can see, she cut it very short and referred to it as a "oops....".

 

 

 

She was trying so I showed no reaction.  I knew if Gary knew how it looked he would be embarrassed.  Its strange that I care still when I know he cannot know how it looks.  I want him to maintain any dignity he can.  He does not know me, cannot talk or walk and no longer even whispers.

 

 

During these few weeks, I have realized how very strong my near 32 years of life experiences with Gary have made me.  While I am human, I also just handle things. I break down once in a while but I always get right back on the horse. For example, the new house had a water leak with subsequent damaging being responsible for a pending duo-bathroom remodel.  So, some boxes will remain packed during construction as it makes no sense to dust up my belongings until later.

 

Heather and Xander are also moving in temporarily and we are all adjusting to life under a smaller roof.  She has helped a lot and shouldered moving many boxes while injured. 

 

I am about to be a widow.  I am alive and well. Gary will be gone soon.  Heaven will be a better place with him in it. 

 

Tomorrow, I am touring the Alzheimer's Association Office of Orange County.  Who knows what is next.....

 



Months to live....not weeks

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

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

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

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

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