Sunday, May 21, 2017

Permission to live with Jesus and Further decline

As I walk into the Memory Care Unit where my husband Gary lives, I never know what to expect.  Today, he was sitting in the living room with his wheelchair buddy Nancy.  She was holding a doll with the care a mother gives her newborn.  Instinct is amazing.


Gary was sitting next to her with eyes wide but no recognition of what was happening around him.  The Unit Manager greeted me and we discussed some of my personal medical issues and then the subject turned to Gary.  She does not read this blog so I told her about the visit to the Funeral Home.  We talked about a potential roommate that might be living with Gary soon.  She gave me a bag of clothes to take home that don't fit Gary with his diapers.  I also decided to gather his bongos and an unused water bottle. Those items are no longer used due to his decline.


I sat with him and held his hand and arm for quite some time.  He was constantly whispering but I could decipher nothing.  When I looked in his eyes, he stopped whispering and stared at me.  No emotion, no hint of cognitive activity.  He would bat his eyes once in a while.  I touched his arm and told him that I know he hates living the way he is and that if he wants to go live with Jesus it would be okay with me.  There, I said it.  I told him I would be alright and that I would miss him.  I said, "You can stay as long as you like (choked up) but I will understand if you leave." 


I don't recall other than my wedding vows, speaking more important words.


After sitting quietly for a few moments, I trimmed his moustache and beard and left. 


I ran some errands and came home.  The kids were watching "Ghostbusters" so I watched for a while until a good friend called.  We chatted about random things and today, he did not ask about Gary.  Everyone assumes status quo.


Later in the evening, after a drink or two, the phone rang.  Caller ID displayed "SUNRISE".  Oh hell.....that always puts a lump in my throat.  The Unit Manager promptly started with "there is nothing wrong."  That is always comforting.  However, what they really mean is that there is no current, immediate life and death situation despite the fact that your loved one has a terminal illness.


She proceeded to tell me that they are taking Gary to a new level or personal care since he can no longer assist in transferring himself.  Despite being in a wheelchair, he has been able to stand for short periods of time to assist in moving to the wheelchair, shower, etc.  He can no longer do this so they will use a lift from now on.  Otherwise, it takes three caregivers to move him. 


Further decline.  I thanked her, hung up the phone and became overwhelmed with tears.  I cried for hours.  Sobbed, heaved and cried.  Sobbed.  Then, as quickly as it started, it stopped and I slept.  I hint of the future.


Today, I am going to church and to our University's annual Commencement Ceremony.  Some normalcy seems really good right now.

Monday, May 15, 2017

"That is the good stuff."



Most of my visits to Gary, unless very well timed are spent watching him sleep...or so he acts.....I think sometimes he is wide awake with his eyes closed.


I try to get to him at mealtime so I can feed him and he usually opens his eyes.  On Saturday, I was feeding him Broccoli soup and he whispered something.  In the past, once he says a thought, it does not get repeated.  This time I put my ear to his mouth and asked him what he said.  He quietly whispered "That is the good stuff."  That is a phrase he used for years when he liked something. Just as quickly, he slipped back to wherever he stays now in his mind. He finished all his food.  He usually does.  He is still swallowing.


Sunday was Mother's Day so I knew there would be lots of activity at "The Happy Place".  When I walked in one of the caregivers pointed me in his direction.  He was sitting in a different place than normal.  He was in the quiet room, covered in a blanket sound asleep.  (See above picture). I sat with him and held his hand for about 20 minutes and it was time for lunch.  We placed him in position at his table with Martha and Nancy. 


Martha was holding a doll while she ate her lunch.  I watched her scoop up applesauce and give the baby a bite and then took a bite herself.  The doll's mouth soon filled with applesauce.  One of the caregivers noticed and with no emotion or excitement told Martha, " Martha, the baby is full.  Let me put her in the crib and feed her a bottle.  Its time for you to eat yourself.  You are a very good mother." This act of kindness choked me though the whole situation was somewhat funny. 


Nancy was also holding a doll but is unable to feed herself so I guess her baby would go hungry that day.  Instead, she reached over and tried to pick up Gary's sandwich. I discouraged her and distracted her with the doll while I fed Gary.


I know that I loved the man who was.  My close friends think that I will "lose it" when he dies. I guess we will find out soon enough.  I hope they are all wrong.


Here is a shot of Gary when he was still clear.







Sunday, May 7, 2017

Fiberboard versus Metal Caskets....

Making Cremation arrangements should not be funny. But, it was this week. With Gary's pending death and all that I am going through, I decided it prudent to make arrangements in advance of his actual death.  So, I made an appointment at the mortuary and told the man on the phone what I wanted.


I arrived a little early to the appointment and was put in a room eerily similar to the one where we made my Dad's arrangements just a few short months ago.  While I waited, I searched around the offerings for urns, ash-art choices, etc.  I noticed their choices in that room were limited compared to what I had viewed in Virginia.


As the funeral director entered, we had an instant humorous connection and he made the process easier.  I was determined to stay light hearted and business-like rather than a weepy near-widow.  He seemed amazed.


I told him that I wanted a cremation with ashes split 5 ways.  He said that we needed to start with filling in all blanks on the death certificate form.  I knew all the information off the top of my head and we proceeded to the forms about the cremation itself.  First, the state requires the body to go to the crematorium in an appropriate box/casket. 


He pulled a list of prices for caskets ranging from $6800 down to $95.  He quickly pointed to the bottom of the page and recommended the $95 "fiberboard" box.  I must have had an unusual expression and he asked if there was a problem.  I said, "Is it ok to cremate my husband of 31 years in a cardboard box?"  He argued the fiberboard is not cardboard and that no one would see the box except for the mortuary and the crematorium.  The concept really bothered me and he picked up on the emotion and opted to show me pictures of the choices. 


I was right.  The recommended choice was similar to the many moving boxes we used over the years to move our household.  Plain, brown with no liner.  I giggled a bit as the picture was so awkward.  I asked that the next version of the casket priced at $295 looked like.  As he turned the page to show me the picture he said, " Its a brown box painted blue."  All of a sudden, the whole process was surreal and humorous. 


I switched the topic briefly to ask about the urn sitting on his desk.  He pointed out that it was a standard size.  He used that moment to twist the subject back to the brown box.  "Besides Ma'am, if you choose one of the fancier wood or metal caskets, they and the ashes don't fit in the urn here."  Really?  Ok, we will take the "fiberboard" casket.


The next portion of the form was about the location where the ashes would be stored or scattered.  I told him that part would be put in San Francisco Bay, part over Yosemite and split three ways into artwork for myself, Heather and Gary Jr.  He had one sculpture to choose from that was way too large for what I wanted.  We decided that I would find some online and send him the information as apparently, they have to split the ashes.


He then asked if Gary had any metal pieces in his body that we had to be aware of during the cremation.  I pictured the furnace encountering the metal and blowing or causing some type of injury to the workers.  I answered that he had a pin in his wrist and one in his ankle from a motorcycle accident years ago. He said, "Oh, nothing large like a rod?"  I finally asked why it was a problem. He answered that the small pins would not pose a problem.  He indicated that the large pieces of metal also don't fit in the urn and they have to sift them out at the crematorium.  Again, it was humorous as there is so much the commoner does not know about the process.


Then he asked if I would be bringing clothes to dress Gary in before the cremation.  I said, "Heck no.  Gary was an old hippie and would prefer to be naked!"  He understood and wrote "naked" in the form.


It was all done.  I walked away with a folder representing the cremation of my husband.  When he dies, Hospice can call the mortuary and they will pick him up.  I just have to pay at the time.


It is all surreal but I feel better knowing the decisions are done. 


After his death, we will have a memorial in Elk Grove and then spread the ashes in the Bay and the rest at his beloved Yosemite. 













Sunday, April 30, 2017

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. 

Tuesday, April 25, 2017

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

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.


Wednesday, April 19, 2017

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.

Sunday, April 9, 2017

"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.  



Thursday, April 6, 2017

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.















Sunday, April 2, 2017

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.


Friday, March 10, 2017

Tears in the Night

On my last visit to see Gary, the Care Manager told me that he was found in the middle of the night crying profusely.  This is highly unusual in that he has shown literally no emotion for months. 

The caregivers checked his diaper, inquired about pain and could find no physical reason for the tears.  Since he cannot communicate, they simply pulled up two chairs and sat with him and held his hand.  How sweet.  How sad.

The impression that I receive from this event is that Gary is still "in there" and feeling something.  Was it loneliness?  Was it pity for himself?  Was he scared?  Was he aware of his terminal situation?  Was he angry?  We will never know.

For all blog readers, it is apparent that I have had a shift in how I am approaching dealing with Gary's situation.  I have stepped away from visiting daily and spending great amounts of time at the Memory Care Center.  I was under the impression that I am grieving-as-I-go and dealing very well with the situation.  I have stated on many occasions that I feel numb. 

In one day this week, three different sources who care deeply for me shared that they feel I am NOT dealing honestly with my situation and that I am about to hit a brick wall because I do not have control and that I falsely think I do.

Since three people said the same thing, it made me listen.  I do know that my husband is terminal and that chances are excellent within a few months, I will be a widow.  I get it....I just don't know what the proper way to deal with it looks like. 

At lunch today, I was watching a family assisting their elderly father to their car.  It was all three people could do to move this man without injury them or him. It brought back memories of doing the same with Gary and pretending that life could be normal.  Life was not normal and I am grateful that I put him in  24 hour care when I did.  I am convinced it extended his life span.  I feel so sorry for caregivers who do not have the resources I have.  Thank you, Lord.

Today, while driving, the social worker from Hospice called to check on me.  The conversation included a recap of both my father and sister dying in the last month; telling her that I am going to Mexico for a week by myself; Discussing pre-death cremation arrangements;  celebration of life plans and the anticipated amount of time Gary will live.  I told her that I don't think he is going to die while I am gone unless something like choking or a heart attack occurs.  I assured her that I will have cell service and will respond 24/7 if they call.

When I think back on the reality of the conversation, I realized how heavy it was and how unfair it was for me to have had this conversation in front of someone else who was riding with me.  I can handle the denseness of the situation but not everyone else can.

Truth is....CAN I handle the situation?  While I was typing this blog, the Memory Care number came up on my phone.  Anytime I see "SUNRISE" on my caller I.D., my heart skips a beat.  Is this "the call"?  No, they simply need to tell me he needs more shampoo, body wash, toothpaste and dental floss.  Whew!  The reality of that heart beat skip was a small wake up call for me.  I DO still feel fear.  I DO still feel anticipation and anger.  I'm still here, too and I am in self-preservation mode. I DO still care.





Wednesday, March 1, 2017

Scheduling Grief

"Hi honey, I've been gone for a while.  Did you miss me?" 

After being gone for two weeks to attend to two deaths in my home state of Virginia, it was weird walking into Gary's memory center and asking this question.  He had no reaction.  He never missed me.

My father and sister died during my trip to the East Coast.  I have to admit that I did not check on Gary the entire time because I knew the Angels were taking care of him in Memory Care and that if something went wrong, they would call me.

I quietly told Gary that my father and sister had died and that was the reason for my absence.  No reaction.  I firmly understand that he did not know me.  I had no reaction either.

So, I clipped his finger nails, trimmed his beard and moustache, as I know the old Gary would expect that....and I left.  I was there for all of 20 minutes.  How cold it felt to walk out of there after being gone for two weeks.  However, at this point, I am numb and trying desperately to feel.  I had no reaction to the deaths of my family members.  The last few years of this Dementia hell have left me grasping to feel....anything.  However, the protection wall is up and I am not allowing anything in right now. 

I am going on vacation to Mexico in late March....perhaps I will feel something then.  In fact, I have scheduled my grief for then.

Sunday, February 12, 2017

Gone is the mischief....



Its been quite a few days since I have seen Gary awake.  He is medicated and every time I go to see him he is either sleeping in his chair or napping in bed.  Apparently his seizures have stopped and he is peeing normally again.  I don't stay very long as I don't see the point.


There is not much to report.  Gone is the mischief he could create.  Gone is the  loving and tender conversation.  He is still somewhere in that broken body but the personality is not there.  He is dying a very slow death.


Meanwhile, my Dad is also in intensive care in a hospital in Virginia and has refused the doctor recommended treatment.  His days are numbered. 


I was thrilled when 2015 was over as it was such a horrible year.  2016 was incredibly taxing.  2017 seems to be shaping up to have several incredible adventures.  Only time will tell.





Thursday, February 9, 2017

"What is Gary's life expectancy?"

"What is Gary's life expectancy?"  After a week of visiting with Attorney's and VA experts, I found myself asking this question of the Hospice Team.  I had to know for lots of reasons.

Currently, I am averaging around $7400 per month for Gary's care at the Memory Care Unit.  Since June 30 of last year, that is greatly depleting our savings.  One attorney referenced this outlay of cash as "hemorrhaging".  Despite the fact that Gary is getting the best care I can find, it still comes to the fact that I will run out of money if he lives more than a year.  

It is a bitter pill to swallow that he is suffering from Frontotemporal Degeneration and will die.  It is a worse pill to swallow to know that it is SO expensive to keep him comfortable and dry.  One attorney said "You have him at the Ritz...perhaps you should move him to the Hampton Inn?"

So, I found myself face to face with his Hospice Doctor, Hospice Nurse, the Center Case Manager and others from the Memory Unit.  Do I move him out of the area to a less expensive place so the money lasts longer?  Divorce is not an option.  What to do?

So, I very bluntly asked the doctor how long he thinks Gary will live.  He boldly looked at me and stated that he wished more family members would have the bravery to ask.  I stayed in business mode and proceeded with the questioning.

To make a very long, agony-filled story short, the answer was "Ada, he has 4 to 6 months left.  I would be shocked if he is alive on August 1."  The doctor indicated that Gary's brain is deteriorating faster than his body and possibly he might die from aspirating, a stroke or something else.

There it was.

I explained the financial concerns.  I asked about moving him to a less expensive facility.  We talked openly about what is keeping him stimulated and doing as well as he is.  The team felt that moving him would be detrimental and would speed his decline.  They even felt that moving him to another room in the same facility would be negative.  So, I decided to leave him where he is and continue to pay the current amount for the remainder of what is now, a very short life.

I spent the evening thinking.  Today, I called the local funeral home to begin making arrangements now so that I don't have to do things in a hurry later.  We will have a celebration of life when the time comes, not a funeral.  He always said that he wanted part of his ashes scattered over our beloved Yosemite and the rest in San Francisco Bay where we sailed for countless hours.  I will observe his wishes.

It is so numbing to think that all this is really happening.  No one can empathize unless they have lived it.  Meanwhile, I go on each day performing the duties of my job and enjoying the blessings God has bestowed on me and my family. 


Wednesday, February 8, 2017

 
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Please consider giving to fight FTD. My goal is to raise $5000!
 
 
 
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Sunday, February 5, 2017

Gary's Roller Coaster Life

This week has been a physical roller coaster for Gary.  One evening he did not know me.  One evening he knew me but I am convinced he didn't know our relationship.  Then, on another occasion, he said my nickname "Ada Potata" out of the clear blue.


He has started seizing/tremoring again, not just at night but also during the day.  The Hospice Doctor has decided to triple his medication.  He has stopped the tremors but it has been reported that despite pushing significant liquids, he is awaking in the morning with dry diapers.  He seems to have normal bodily functions during the day so we are not sure if he is holding it and maybe has some awareness.  He cannot communicate so we will not know.  All angels/caregivers are aware and staying alert to any signals.


Meanwhile, I am doing fine.  In fact, better than I have been in years.  Despite Gary's condition, I am able to focus, started a Doctor Prescribed Diet and feel great.  Some may find it hard to accept that I am moving on with my life while Gary is alive.  He is being well-cared for and is safe.  For now, that is all I can do for him.



Saturday, January 28, 2017

Purging his wardrobe

I have not visited Gary much lately.  Our dear friend Shirley came down from Portland last weekend to visit us and we went to see him three times.  She was moved by the experience as evidenced by her tears and subsequent conversations.


It is difficult seeing the transition from what was a brilliant mind to that mind of today. 


In my last post, I announced (in essence) that I was taking back what control of my life that I can and that I am thinking differently and making decisions for me.  I have done that since I committed to it.


Through the help of special friends, I am getting my energy back.  I am separating from the negative emotions I have been feeling for a period of time for which I can no longer track to the beginning. 


I stopped by to see Gary briefly today.  He stared at me.  He seemed to know me but had no reaction.  I hurried out of there as this morning I started a project at home.


This morning, I began purging and bagging all of Gary's clothes.  I boxed his dress shoes and casual shoes in separate boxes.  I used Hefty flex bags to hold all the shirts, pants, swimsuits,  khakis, hiking clothes, etc.  It was 12 bags full.  I will give them to charity.  He will never need them.


I did not finish.  I still have his dress clothes, neckties, t-shirt collection, coats, jackets and shorts. I just could not do anymore today.  I will do it soon.


Upon finishing, there was a catharsis that existed.  It was magical.  I have let go.  I can't tell you how exciting it is.


I will always love Gary.  I hate Frontotemporal Degeneration.


I am surviving and starting to get happy.

Sunday, January 15, 2017

"Bloggers Want To Know..."

What a fantastic week....for me, at least.  Life at the University is full of excitement and advancement every month but January seems to be particularly fulfilling.  Especially when my initiatives are working and my teams are on top of their game.


Many nights, while driving home or to see Gary, I often reminisce of days when I would call Gary on my way home from wherever I was and share my day.  He would listen, ask questions, provide insight and share in my professional growth.  Those days are gone.  I don't even sit and talk with him hoping for a glimmer of that side of him....there is no point. Don't feel sorry for me when you read that.  I am over the period of feeling sorry for myself.  It just is....I have no emotion tied to those memories anymore. 


On Friday, an old friend came to visit.  She has seen Gary since he moved into Memory Care so I felt comfortable that her shock in seeing him now would not be so great. We spent Friday evening with her listening to my current thinking about my life, what the future holds and a particular troubling dilemma I have that will not be discussed here other than to say that I am in a very different space about my life, my future.  It is a good place.


During that conversation, she asked me for an update on Gary's condition.  For avid blog readers, apparently I left out a significant update on his ability to stand anymore...or not stand.  He went through one day two weeks ago where he was no longer able to stand and needed to be moved by a mechanical lift.  Even our daughter Heather asked me on Saturday morning about his condition by saying "Bloggers want to know!"  To all readers, I apologize for leaving you hanging.


That period of decline was temporary and lasted less than  12 hours.  I called the next morning and asked about his condition and was told he was back to "normal".  Not normal as we know it, but normal that he could stand long enough to have his diaper changed while using a walker as support.


Susan and I spent about a half hour on Saturday with Gary and he never opened his eyes though he was awake.  He held her hand and repeated some phrases quietly.  I was not expecting much response but we left to go on a day of adventure in Southern California.  We toured the Queen Mary and ended our day eating outside and dancing to a swing band at Downtown Disney. 


For the past few years, when I could get away and do things, I always found myself full of guilt or having yearnings for having Gary with me or wondering "Wouldn't Gary love this activity?"  Due to some new thinking, yesterday contained none of that.  I was able to have fun and enjoy myself as a human.


Three times this month old and trusted friends talked sense into me and assisted me to change focus.  I never realized how desperately I need to kick the "woe is me" mantra and move on.


I love Gary with all my heart and will take care of him always.  He is my husband.  I just do not need to live as if the world is ending.  Our world together as we knew it has ended, but not the whole world.  The Lord has a plan for me to do BIG things.  I intend to listen closely and fulfill those plans.  Prayers are appreciated as I embark on new adventures!  I am receiving some much needed spiritual guidance so everyone relax.  I will not do anything stupid.











Thursday, January 12, 2017

A Partial Widow at 53

How can one be a "partial widow"?  A dear friend recently used this label for me after I was expressing discontent with not having a normal, healthy husband of 31 years at my side.  I was feeling sorry for myself and wondering what life holds for my future. 

She has said this to me a couple of times and she is exactly right.  I seem to live in this surreal life where I work an Executive Job, have fantastic job satisfaction and yet most nights, I stop by the Memory Care Unit where my husband lives and then I go home.  My step daughter and grandson live with me but for the most part, we live separate lives. My husband is not there, physically or mentally.  Thus the "partial widow" comment.  I grieve for him almost everyday.  At least I grieve for the man that was.  His body is still there and visible when I visit but for the most part, he is a stranger.

It has been said many times, "Ada, I don't know how you do it."  This expression comes from people who have never lived a life with a mentally disabled, terminal spouse.  I just keep going everyday and try to find peace in the fact that I am a married woman with no normal marriage.  I am a normal female who wants a partner that can meet me half way. I sometimes get bitter. I sometimes get angry.  But for the most part, it is incredibly lonely in every way... and all that implies.

Perhaps some day I will have life #2.  I, in no way, am anxious for the next step that will occur in this married life. So for now......I will just continue to take one step at a time and know that God is in control and has a plan.  Please continue to pray for Gary to have no pain or discomfort. 

Saturday, January 7, 2017

"I'm Not Gonna Miss You"

The Hospice Nurse called me last night to tell me that Gary's X-ray came back showing no injuries.  No broken bones.  So, he has been getting Tylenol as needed.  His wrist has been swollen and pained for a couple of weeks.


Today, I reached the "Happy Place" around 10:45 and his hand looked almost normal.  He was sitting in his wheelchair among the other residents listening to the Activity Director and mostly snoozing.  I said hello but did not pull up a chair next to him because I would have blocked another resident, Nancy's view.  I really don't think she knew anything going on and she probably wouldn't have known that I was blocking her view but she is an old lady so I have to be nice.


I felt like a fish out of water because I didn't really want to sit down with the residents so I checked on Gary's room, sorted the clothes in his closet, and plugged in his beard trimmer.  I went back to the living area and sat down directly across from Gary about 5 feet away and listened to the stories being shared in the room.


Around 11:45, he suddenly woke up, sat up straighter and looked right at me.  I said, "Well, there you are!  Hi babes!"
As usual, he had no visible reaction.  There is no emotion to be found on his face anymore.  Here is the look of FTD.
I fed him lunch.  When I first entered the unit this morning, one of the angels stopped me and asked me to bring in a thermos cup with a lid so Gary can pick up his own hot beverage.  She says that he tries to pick up the coffee cup and is able to drink, but has coordination issues with sitting it back down and spills the liquid.  They tell him that this is okay but she detects that this embarrasses him and then he doesn't try again.  She senses that the cup would help him be more independent. 


He seemed troubled today.  I don't know why he would be other than the fact that maybe today he is more aware of his situation. 


I wheeled him into his room for a beard trim.  Afterward, I played some songs on my telephone.  He showed no reaction.  I held his hand and rubbed his arms.  I played Glen Campbell's song about Dementia "I'm Not Gonna Miss You".  He seemed to listen. It made me sad.  Please find the lyrics below:


"I'm still here, but yet I'm gone
I don't play guitar or sing my songs
They never defined who I am
The man that loves you 'til the end

You're the last person I will love
You're the last face I will recall
And best of all, I'm not gonna miss you
Not gonna miss you

I'm never gonna hold you like I did
Or say I love you to the kids
You're never gonna see it in my eyes
It's not gonna hurt me when you cry

I'm never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains

I'm not gonna miss you
I'm not gonna miss you"



Written by Glen Campbell, Julian Raymond • Copyright © Warner/Chappell Music, Inc

I heard the other residents exercising in the other room, so we went there and I attempted to get Gary to move to the commands.  Nothing.  So, we sat there.  I held his hand until he fell asleep. 

As I was sitting there watching him sleep, three of the residents began a conversation.  The room is very open and there is no privacy. One of them was the others about her mother having Dementia.  She explained how her father had taken care of her mother for years and how difficult it was on him.  She expressed that she hoped she never got Dementia because she did not want to be a burden on her family.  All three of the other ladies also lamented that they, too wished that they never get it.  None of them know that they are in a Memory Unit because of Dementia or Cognitive issues.  Listening to the conversation was rather surreal.

Then, they started discussing the need for individual phones in their rooms so they can call their loved ones.  The devised a plan to go to the office and have a conversation with the manager demanding that phones be installed in all their rooms for a $5 per month fee.  They said that when they "check out" and go home that the fee could be transferred to another resident.  I was quite impressed with their plan.  Then, the phone on the unit rang and one of them said, "Perhaps we should answer it." Another one said, "Oh no.  They have a whole bank of operators in the back room that handles all the calls and they will come get us if its for us."  Absolutely all of this was fabricated in their minds.  However, they all agreed that this information was the truth and they started talking about the weather. 

I am always amazed at how God enables these folks to not suffer but instead to carry on as if they were spending the afternoon at a country club.  It was beautiful.

Normally, Gary takes a nap and has a routine changing at 2:30.  His caregiver came to move him into his room and so, I left.  He always needs two people to assist him.

Wal-Mart was the most logical stop for purchasing the cup and some Dixie cups for his dispenser.  On the way back home, I stopped by Gary's to drop off the cup.  He was sitting out in the hallway wide awake.  Something was wrong.  The Care Manager came over and explained that for the first time, Gary was unable to help them by standing to move him from the chair to the bed.  Apparently, for six months, he has been able to stand long enough for them to safely change him and get him to his nap.  Not today.

So, they were retrieving a machine from the Assisted Living Unit that would safely move him to the bed.  They were reallocating it to his room when I left again.  Wow.  Reality.  He could be back to his "normal-not-so-normal" self tomorrow or he could now be totally reliant on people moving him.  Dead weight.  Only the Lord knows what tomorrow brings.

The hardest part of having a spouse with Frontotemporal Dementia is well, everything.  I can't heal his disease.  I can't live normally without guilt.  God is in control and the spouse had no insight.  Each phase of this horrible disease is unbelievable. 

Wednesday, January 4, 2017

Missing his touch...

Visiting Gary tonight was very special.  I had a fabulously successful day at work and was feeling very good leaving work.  Traffic was heavy but I got to Gary's Memory Unit quickly and found him sitting in the living area.  He kissed me hello and I said hello to all the residents who responded to me. 

The angels were dealing with all the residents' individuals needs and deciding on a movie.  Gary was particularly awake and confirmed what the care manager told me when I came in.  The swelling has decreased in his hand but he is articulating that he has pain.  We gave him a pain pill and requested an xray tomorrow.

Meanwhile, I noticed when I bent over to fix his shoe that he started patting my back.  I stayed in a bent over position to see if it was a fluke.  He continued to caress my back and pat me.  It was as if he was aware that I have feelings.  I sat up and he moved his caressing to my hair.  He felt the back and then moved his hand to the side of my head and stroked my hair.  He said, "Your hair is soft."  I almost cried.  This is more aware and present than he has been in many months. 

I told him that I love him and he replied, "I love you, too."  I said, "I'm glad you love me.  It's easier that way."  He sort of smiled and said, "Yes, its easier."  Despite the fact that he was repeating words he was hearing on the movie in the background, these were original words and thoughts.  Thank you, Lord!

He went back to stroking my hair and arm.  I started talking to him as I would have years ago.  I told him about my day and that it was successful.  After a few minutes, he stopped repeating my words and went back to repeating the words on the movie in the background. 

Over the weekend, I had tried to get him to watch the screen when the sailboats were on, but he would not.  I thought that tonight, he might watch.  I moved him over to a clear view of the screen and moved his chin to where he could see the actor John Candy waterskiing on the screen.  He started watching it.  His eyes stayed fixed for about 5 minutes of the movie.

I told him goodbye and left.  He kissed me goodbye and said that he loves me.  Wow.  I could not have asked for a greater surprise. 

It is amazing that these few moments of recognition are so valuable.  I hadn't realized how much I missed his touch.  It was if I was starved.  I can only imagine how he must feel during times of clarity.  He must miss us terribly.....I surely do.

Monday, January 2, 2017

"Don't Leave Yet!"

Happy New Year 2017!


After returning from a short family vacation to LEGOLAND and the Safari Park, I went to visit Gary today.  I took along a nutritional supplement, MSM with me.  He ran out a few months ago and the prescription provider could not get it.  We tried a few months without it and I'm convinced part of his issue with his hand is arthritis/joint related.  So, I will buy the product and take it in. 


He was sitting in the Living Room of the Unit with his eyes tight shut.  He was obviously asleep and the angels reported that he did not even wake up when the therapy dogs came to visit. I kissed him on the cheek.  No reaction.


It was time for the ambulatory residents to go for a walk upstairs in the Assisted Living Floor.  We were asked to go so I pushed Gary in his chair and we made three laps.  He was semi awake but it was more visiting time with three of the ladies.  We took Annie the dog along and all seemed to need to get out of the memory care unit.


As we arrived in the living area, Gary abruptly awoke.  I kissed him and said "Happy New Year".  He replied and puckered for a kiss. It was time for lunch so I sat next to him at the table and started to feed him.  He picked up his glass and drank his juice out of a straw.  He needed a little help sitting it down, but seemed very aware today.  Even stranger was the fact that Nancy, 96 years old/non-verbal and always needs help feeding was feeding herself.  She picked up her spoon and put three mouthfuls of peas into her mouth and chewed.  I acted as if I was not watching so that if she had a moment of clarity, she would not be embarrassed or stop.  She then sat back in her chair and refused to eat anymore at that sitting.  She was trying desperately to put words together and was adamant about something related to the brown pureed stuff on her plate.  We giggled together and then my attention turned back to Gary. 


After lunch, we moved to his bedroom to do some trimming and snipping of moustache and fingernails.  He chatted and made words but really, nothing made sense at that point.


We moved back to the living area and left to go to the drug store for more combs, shampoo, Body wash and assundries.  When I returned, there was a travel documentary on about sailing around the continent of the United States. 


Gary loved the sport of sailing so much that he wanted us to go sailing full time.  In fact, we spent many years preparing even though we will never go.  I  tried to show him the screen and show him the sailboats on the screen.  He would not look at the television but repeated every nautical term he heard.  The entire time, I was holding his hand, stroking his arm, scratching his head and rubbing his legs.  I put my head on his shoulder for a few minutes and relished in the closeness that I so desperately miss.  He kissed my head and kept repeating what he was hearing on the cruise-show.


I knew that I had to leave and told him that I had to go back to work tomorrow and that I would be by tomorrow night.  He grabbed my hand hard and would not let go.  He said, "Baberoon, don't leave yet."  It does not get any more personal or present than that.  Not only did he call me by a loving nickname, but he stated what he wanted. 


I sat back down and stayed another half hour.  We just sat together and held hands.  He would look over at me with that blank FTD stare but I knew by the hand squeezes that he was there.


When I did get up again to leave, he let go of my hand.  I told him that I would be back tomorrow night and he said, "Tomorrow night.  I love you."


Even a manicure, pedicure and a dinner later, I have very little feelings.  I started my diet again today...for real this time.  I am supposed to start the book today.  I have writer's block.  I am not sure where to start.  What would Gary want me to say?  I'm sure the words will come.