His time is growing short.

Gary sleeps....a lot.  I visited him yesterday morning right after breakfast.  He was sound asleep in the living area of his Memory Care Unit.  One of the angels told me that he had eaten a donut and promptly fell asleep leaving the rest of his breakfast uneaten.  That was around 8:10 am. Elvis was signing "if we never meet again this side of Heaven" and many other gospel songs.  I wondered how much I will sit and listen to him sleep in the near future. I sat with him until I had to go to the dentist at 11:30.  Other than breathing, he did not move.


Earlier in the week, our long-time friend Susan visited again from North Carolina.  These pics were taken:



Susan is so good at understanding that the communication is one way. She held his hand and talked to him about old times and things we had done together while I fed him a hot dog and potato chips.  He stared at her just like in the picture.  He was VERY awake but mostly unresponsive.  We discussed later that we are not sure what he thinks or if he is thinking.  He just stares and holds on tightly to whoever is holding his hand.


After church today I stopped by and spent some time walking him (and other residents) in the hallway of the Assisted Living Side of the facility.  It was 86 degrees outside and way too hot to walk them outside.  After a few laps, we took them to the shaded porch outside.  He slept the entire time.  I trimmed his nails and then left and went to Costco.


His time is growing short.  I feel it.  I know it. 

Too blessed to be stressed....

On my way to a personal medical appointment this morning, I stopped by Gary's to feed him breakfast.  He was sitting at the table with a Baseball cap on his head, sideways so we could see his face.  The cap is his famous " I'm too blessed to be stressed" cap with "Jesus" printed on the back.  How appropriate.  He does loves Jesus and would have been happy to wear it.

I sat with him and fed him Oatmeal, waffles with syrup, scrambled eggs, sausage, bacon and cranberry juice.  I also brought him a Starbuck Caramel Macchiato. He ate every bite and seemed to enjoy it.  As the meal unfolded, I started listening to the Adele CD playing in the background.  I brought that cd to them months ago.  I started to cry when I listened to the words "when we were young".  I held my face very close to Gary's and wiped a tear that ran down his face.  I think it was his eye watering and not related to emotion.  I contemplated that very soon I will no longer be able to see him, so the words were especially emotional.  I cried.

"When We Were Young

Adele

Everybody loves the things you do
From the way you talk
To the way you move
Everybody here is watching you
'Cause you feel like home
You're like a dream come true
But if by chance you're here alone
Can I have a moment
Before I go?
'Cause I've been by myself all night long
Hoping you're someone I used to know

You look like a movie
You sound like a song
My God, this reminds me
Of when we were young

Let me photograph you in this light
In case it is the last time
That we might be exactly like we were
Before we realized
We were sad of getting old
It made us restless
It was just like a movie
It was just like a song

I was so scared to face my fears
Nobody told me that you'd be here
And I swore you moved overseas
That's what you said, when you left me

You still look like a movie
You still sound like a song
My God, this reminds me
Of when we were young

Let me photograph you in this light
In case it is the last time
That we might be exactly like we were
Before we realized
We were sad of getting old
It made us restless
It was just like a movie
It was just like a song

When we were young
When we were young
When we were young
When we were young

It's hard to win me back
Everything just takes me back
To when you were there
To when you were there
And a part of me keeps holding on
Just in case it hasn't gone
I guess I still care
Do you still care?

It was just like a movie
It was just like a song
My God, this reminds me
Of when we were young

When we were young
When we were young
When we were young
When we were young

Let me photograph you in this light
In case it is the last time
That we might be exactly like we were
Before we realized
We were sad of getting old
It made us restless
Oh, I'm so mad I'm getting old
It makes me reckless
It was just like a movie
It was just like a song
When we were young "

I thought to myself that I should tell him that it is okay to "go".  I refrained.  

I left and went to my doctor's appointment.  I have my own health challenges that may prove to be another hill to overcome, but we can talk about that later.

Later in the day, the Hospice Social worker called to say she had seen Gary and agreed with the prognosis that he may have two months left.  She asked, "Ada, have you given him permission to die?"  Wow.  Hit me between the eyes.  How ironic that I had thought this just a few hours before.....

We discussed the timing and she suggested that even though he is a couple of months away that letting him know that I will be okay if he dies.....might be a good idea.  Who would ever think that loving someone could be so difficult?

She confirmed that even though I have been grieving that I am fooling myself if I think his death will not effect me.  I expressed that I think it was helpful that I watched my sister die two months ago.  How SO?  I expressed that if Gary dies a slow death, I know what to expect.  If he codes or aspirates, etc....well, that is a different story.

I went back to my second doctors appointment and considered the concept of mortality.  What a concept.  I am so thankful that Gary is saved by the blood of Christ.  It makes letting him go so much easier.

Further Decline

I went away for the weekend.  I went far away.  Where is not important.  I needed it.

This is a busy time of the year at the University, so I haven't spent a lot of time with Gary. Between emotion, work and grief, I am choosing not to go to him very often.  Yes, it is a choice.  A Very HARD choice.  The Saturday before I left for my trip, I went to visit Gary and do the ritual trimming, clipping, etc for him. 

On that day, he did not know me.  For some reason, that doesn't bother me anymore.  As I walked out and knew that I would not see him again for a week and a half or so, I felt reminiscent of old times.  We used to travel together and have great times.  I am so thankful for those years and that we did not wait "until we retire." 

While I was on the airplane waiting for take-off to come home, the Hospice Nurse called to inform me that Gary has had further decline and they are changing his medications and taking him off several medications that he really no longer needs.  There is no point in managing his cholesterol....

He cannot swallow the pills anymore so they are moving to an applesauce based crushed medication of his seizure meds and Prozac.  His hand is now completely atrophied and swollen about 3 times the normal size.  Apparently, this happens with FTD.  His hand is also now exuding an unpleasant odor.  So, they are giving him a brace and some medication to attempt to alleviate any discomfort.

The nurse continued to say that he is staring more-so than before and non-communicative.  I expressed that this was not new and she indicated that he is worse.  He also is extremely hunched over in his wheelchair and cannot sit up straight.

So, when I got home to Orange County from a 12 hour travel delay, I went to work and then straight to visit Gary.  He was sitting at the dinner table in the exact position the nurse had described.  One of the angels was feeding him soup.  As I took over, I noticed that he had soup all over his bib and napkin and I became irritated.  For a moment I could not understand why she was so sloppy. As I started to feed him my perspective changed. 

He was so hunched over and crooked that when one put the spoon to his mouth, it spilled due to the severe angle.  I could not refrain from spilling it either.  Gary used to say "Experience is the only REAL truth."  Lesson learned.

So, he got the rest of the bowl of soup by me merely dipping the spoon in the soup so remnants of soup stuck to the spoon.  This prevented spillage and enable him to put the spoon in this mouth.  This method took quite a while to finish the soup.  I tried to prop him up in the chair but his body would not cooperate.  How uncomfortable he must be.

I finished feeding him his dinner and took off his bib to reveal the swollen hand.  He was grasping around a washcloth they had rolled and provided to attempt to keep the hand from curling further while waiting on the brace. I gasped audibly when I saw it.   He had no reaction.  That doesn't mean that he can't hear me or that he is not comprehending what is happening.  I am careful not to talk about him in front of him as if he is not there. 

I grasped his healthy hand and moved my face down to look in his eyes.  His eyes were bloodshot and full of mucus.  I used some eyedrops to hope that he felt better.  He was pale and now strikes me as looking like an older man.  He never looked his age until now.

I kissed him and he puckered to kiss me in return.  I said, " I love you." He replied, "I love you."  It was repetition, NOT a response.

I left.  I came home and ate dinner and then went for a massage to attempt to further heal my neck injured in my recent car crash.  A friend called and we processed the pending death of my husband and how I am feeling/grieving/compartmentalizing, etc.  I have no idea how I will handle this but know I should embrace every moment as a celebration of his life and not a grieving for what was.

"No, Shrimp!"

To the best of my recollection, since Gary moved into Memory Care in June of 2016, I have not cried one time while there.  Much less, in front of him.


During my last visit, I was particularly emotional.  When I entered the unit, one of the caregivers looked at me with a rather peculiar expression and said, "Wow, your timing is good.  Gary just had a full bowel movement and he is all clean!"  Great.  Just what I wanted to hear.  I responded, " Great, thanks."  I was on the verge of tears but kept moving. 


As I entered the Dining Room, Gary was sitting with the usual suspects, Nancy and Martee.  I said hello to everyone and kissed Gary.  He puckered.  I am convinced it was a lifelong reflex, not an acknowledgement of me.  They were about to serve the food.  I planned it that way.  I can get there at 5, feed him and get out quickly without too much interaction with the people who ask "where have you been?"


An angel asked "Would Gary rather have Taquitos or Shrimp?"  I thought about his previous desires and said, "I think he would want Taquitos." Completely out of character, he turned his head, looked at me and corrected me.  He said, "No, Shrimp."  I was flabbergasted that he expressed a desire.  The girl said, "Did he just say that?"  I responded, "Please bring him shrimp." 


While we were feeding him, I started talking to him about normal things.  I let a tear slip from my eye and when I realized it, I got very choked up and started to cry.  I looked at him and he also let a tear leave his eye.  I asked him not to cry that I couldn't handle it.  He stopped crying and went back to eating. 


Just as quickly as he snapped out of his dementia, he snapped back into it.  I fed him his meal and moved into his room for clipping of facial hair.  He seemed a little aware of me and touched me on my arm at one point.  It was a human reaction, not that of husband and wife.  It was discouraging.


So, everyday I grapple with moving on to life without him.  It gets easier and easier.  Some days its hard.  I have accepted that I will never again have a conversation with him.  I will never get advice or hear sweet nothings from him.  That part of our relationship is very dead.  I mourn yet, I am celebrating what was.  


There is hope.  

Anger. Guilt. Pissed off. Disappointed. Hurt. Grief.

Anger.  Guilt. Pissed off.  Disappointed.  Hurt. Grief.


Those are emotions I feel right under the surface of my every action.  They are just deep enough that I can ignore them, hide them, cover for them and use every excuse in the book not to feel them.  The interesting part of that cover up is that the people who are closest to me and really care see right through it. 


Today, a very dear friend pierced the emotional veil and helped me see that I feel all those things and that I am not facing the fact that I feel them all and that my excuse of "feeling obligated" to take care of Gary is a load of crap.  I sobbed.  Finally.  The emotional purge was short but effective. Boy, it sure hurt getting to that point, but he is right.  I don't feel obligated....not really.  I don't know what I feel.


I know that I have been married to Gary for 31+ years since I was a very young 22.  I loved him that entire time and we had a magnificent life.  Adventure was always at the forefront of life.  I know that Frontemporal Dementia is a disease and he had no control over his body when it came to him showing symptoms.  He has a disease and he can't help it.  Frankly, I am so angry about it that I have manifested it into being angry with him.  That is unfair but that is how I feel.


I love the man who was.  I love a man who is no more.  He is a shell.  The man I loved and treasured is gone.  That makes me angry.


"Ada, you are about to go through a major life change."  How true.  However, I would like to point out that I have already gone through a major life change.  I don't have a husband in my home.  I no longer have the man whom I could call at any hour of the day and hear a comforting voice.  I don't have my life partner to share ideas, snuggles, laughter, torment or daily life challenges.  That makes me sad and angry.  I have no control over what happens with Gary's mind and body.  So, I wait.  I wait for it to be over.  I wait for him to not suffer.  I wait for death.  I wait for that new life. 


I make feeble attempts at starting a new life.  I've lost weight (40 more pounds to go), I bought a new car (after totaling the old one), I bought a new wardrobe, I've made new friends and I've been traveling.  What more can I do?


Its been said, "Ada, you know what you want.  You are refusing to see it."  For now, I don't know what I want....maybe it is deep inside me and I just can't see it.  I do know that I want happiness again.  I just don't know how to define happiness anymore.


Meanwhile, Gary is in Memory Care sleeping, eating, peeing, pooping, staring and living his life through caregivers.  It is a miserable existence....at least from this viewpoint.  He can't communicate so I don't know what he is thinking, if anything.  We will never know. 


So, Ada stays numb most of the time.  Its easier than dealing with the above listed emotions that lie directly beneath the surface.  One day, I will have no choice but to deal with them.


Anger.  Guilt. Pissed off.  Disappointed.  Hurt. Grief.

Currently, I have few words....

Its been nearly a month since I posted my last blog.  Many people have inquired about my whereabouts and what I have been doing.  Frankly, I don't really know what to say these days.

I went away to Mexico for a week by myself.  The week before I went I visited Gary at his memory care unit.  I no longer call it "The Happy Place" like I did when he first moved there.  Then, we still had smiles and happiness.  That no longer exists.

That Sunday, I went to trim his fingernails and trim his beard.  I accidently cut the skin on the end of the thumb.  As it bled profusely he showed only shaking as a reflex.  No ouch, no finger in the mouth, no nothing.  He didn't even pull away.  That lack of response saddened me.  I know in my heart that he did not know me that day nor care.

I stayed a short while and took off to pursue adventure on my first vacation alone.  The last time I was in Cancun, Gary was with me and even then, starting to show signs of FTD.  Many of his misspoken feelings, inappropriate interactions and forgetfulness were apparent then.  As I visited different parts of the resort and Cancun, those unpleasant memories that I thought were so deeply buried returned to my memory.  It is so sad and such a shame that such a brilliant light and mind is being extinguished by this horrible disease. 

I met several couples with whom I had dinner and talked with by the pool.  The typical question was "Where is your husband?"  Then I would give a brief synopsis.  Some cared, others could not relate.  I felt no guilt for being there and relished in the praise I received and gave myself for starting to live again.

When I returned to the Memory Unit last Sunday, I held his hand and for a faint moment he recognized that he knew me.  I doubt if he knew I am his wife. I could not emotionally stay very long...maybe 20 minutes.  I had to move on about my day as I was leaving Monday for a conference in Sacramento.

I celebrated my 54th birthday with old friends from Rancho Cordova where Gary and I lived for 8 years prior to moving to Anaheim in 2015.  It was wonderful to feel that kind of love.

On Wednesday morning, I totaled my BMW X3.  Some items from my front seat flew into the floorboard when I was spooked by a shadow, animal or something.  I attempted to retrieve the items from the floorboard and took my eyes off the road.  I hit the curb, over steered and knocked out an Anaheim lamp post head on into the cement.  A 40 pound lamp fell off the pole and crashed through my sunroof missing me by inches.  I walked away with only some bruises and scratches.  God is always Good but he was extra vigilant that day.

After realizing I was okay, I asked for my phone.  I wanted so desperately to talk to Gary.  In the old days, he would have been by guiding light, rescuer and comforter.  Instead, I called his daughter Heather and she rushed to my side. Her caretaking skills and love for me were exceptional.  I will never be able to express to her how much that meant in those crisis minutes.

God's grace continues to cover me with protection.

On Saturday night, I joined a friend at an acoustic Vince Gill concert.  I knew he would sing "Go Rest High on that Mountain" which is a mournful, beautiful tribute to a dead loved one.  I did not make it through the song without grief tears streaming down my face.  Tears for my Dad and Sister who died last month and for the death to come of my husband. 

After church today, I visited Gary.  He was particularly out of it and leaning over in his chair like he often does now.  I tried to comb his disheveled hair to no avail.  He would not look at me nor acknowledge my presence.  He stares at the wall. 

 
His hand is swollen again.  A recent x-ray showed no fracture nor broken bone.  I requested the doctor to examine it again as it looks painful even though he shows no reaction when its manipulated. 

I looked at him sitting in that chair and staring out into space.  It did not break my heart any further than it has already.  I felt a different sense of "alone".  He is just not there anymore. He is alone in his shell of a body and I am alone in our marriage.

A good friend asked, "Why do you still go if he is so gone?  Its so hard on you, Ada."  My answer now to that question is:  "I feel obligated."  That is a horrible place to be but it is true.

We do not know when Gary will die.  It won't be long, we know that fact.  I hope his trip to Heaven will be easy for him because he will be leav ing the FTD hell here on Earth.  God bless him.