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.