Mission Accomplished: Move to Memory Care Complete

Gary's move into Memory Care is complete.


I awoke around 4:00am and laid in the bed next to Gary just looking at him.  I knew it was the last time.


Jessica was due at 7:30 to shower and dress Gary and keep him while Heather and I went to the new place and moved in the belongings.  Instead, I showered and dressed Gary.  This activity can be very stressful but today it was merely a labor or love.  He cooperated fully and seemed to understand as I talked to him about "last times".


Heather took Xander to school which is right down the street from "The Happy Place" and met me there to start the move in process.  We hung all the pictures, made the bed, hung his clothes, labeled his new furniture with its contents.  When we felt it was complete, we went home to get him.


Here are some pics of the décor.

When I got home, Gary was sitting on the sofa in a blanket watching television with Jessica his caregiver. At some point, I went over to him and once again explained that he would be moving away today to a place where he will be well taken care of and be happy.  He had a glimmer of recognition of my words and then started reading the close captioning on the television.  That was exactly what I needed as a premonition that maybe this would not be so bad.

Upon arrival, we walked into the unit and all the caregivers rushed to welcome him.  We made our way to his new room and showed him the pictures which immediately received no recognition.  He sat down on the bed and started to lay back....drained.  We had him sit up just as his nurse came in the door with the unit Puppy named Annie.  Six months old and all tongue, she introduced herself to Gary and he said, "My dog."

After a few minutes, we took him to the lunch room where he was introduced to his table mates and we left to go to lunch. 

Jessica and I had great conversation at lunch and it appeared that Gary's caregiver was also on duty to serve the wife.  It was nice to have someone who understood my angst.

We arrived back at the Happy Place to find Gary sitting in their living room at a table.  I went to his room, checked on a few things and found that his bed was not working properly.  They were dispatching Hospice to fix the bed.

Standing in his room was surreal.  Gary will be LIVING there without me, without Diva.  What a concept after 30 years of rarely being apart.

I decided it was time to go.  I went into the room where he was still sitting and said, "I'm going home now.  I will visit you tomorrow.  I kissed him on the lips and he said goodbye.  As I walked away, I turned and looked at him and blew him a kiss like I have a thousand times before when leaving for work.  The trick is to "catch" the kiss and put it down the front of your shirt and pat over your heart as if the kiss is making your heart beat.  In perfect form, he caught the kiss, made his heart beat and blew back a kiss with a smile.  I caught it and made my heart "beat."

I could leave now....my work in transitioning him was complete and accepted.

I had envisioned that part of the day to be the hard part.  I was wrong.

As I sat in the car in the parking garage, I became numb.  I started the car and realized that I did not know what to do, where to go.  For 2+ years, I have done nothing but go to work and take care of Gary.  It was 1:30 in the afternoon.  What does one do with free time?

Though it may sound silly, I was paralyzed.  I saw that my friend Shirley had sent an email and I immediately called her.  She was so gracious in taking my impromptu call and cried more than I did.  We decided that I should get a pedicure and manicure at a new place where I knew no one.  It would be easy as I would not have to answer questions, nor talk and could just chill.

I did.  It was nice having time to myself but it also made me realize that I will have a lot of time to myself. 

I came home, put out the trash.  I eliminated every trace of incontinence....all the extra pads and diapers.  I am done with that in the home. 

I received an email from Gary's coordinator that said they had fixed his broken bed motor and he was sitting in the living area with other residents playing a trivia game.  She said he had answered some questions and seemed happy.

For now, I will start seeking the new normal.  Tonight's bedtime for Diva and I will be unusual.  I hope we can sleep. 



Preparing for the move to Memory Care

Gary will be moving into "Memory Care" in three days.  So, in order to get ready, I had to do a few things that frankly, were very uncomfortable.

First, on several occasions  I have attempted to tell him that he is going to live at "The Happy Place" where people can take care of him better than I can.  The delivery has to be just perfect in that event that he actually understands.  I certainly don't want the news to be flippant or insensitive.  He still doesn't get it.

On Saturday, I spent the day looking at check lists and packing his belongings.  Every piece of clothing had to be thought out to seek the perfect item.  Pants have to preferably have elastic waist with no draw string.  Shirts have to be hot water friendly and wrinkle proof.  T-shirts have to be soft and not provoke too many questions as to make him uncomfortable if he can't answer. (This is my problem, not his).  Every item had to be individually marked "Gary" or "G" if that is all that fits.  Each sock, shirt, pants, robe, etc was labeled with a permanent marker that hopefully will not wash off after use. 

I folded everything carefully, adding hangars where appropriate and labeling the box.  What did I forget?  I tried to realize that he is only 8 miles away and I am going to visit all the time and can take clothes as necessary. 

I ordered the hamper for dirty clothes, replenished all the personal toiletries....the right shampoo, soap, toothpaste, toothbrush and deodorant.  Labeled everything. 

The picture frames came in today for the special photographs I had reprinted for his wall décor.  I think they are perfect.  I packed his favorite Bible plaque and added in "The Lord's Prayer".  He still says it every night with prompting so hopefully, he will see it from his bed and maybe take the hint.  I can't believe that after 30 years I will no longer be sleeping with my husband.  I'm not referencing sex....I'm talking about rolling over in the night, touching his shoulder and telling him I love him.  He always responds in kind.  The thought of rolling over one night before I realize he is really away and trying to touch his hand or stroke his brow.....and he won't be there.  My heart breaks.

Meanwhile, I have one of the second most important weeks of our year at the University.  Tomorrow is a critical day in regard to preparing for our Reaffirmation.  I have a caregiver coming at 7 am so I can get to work on time.  He will not go to Adult Day Care tomorrow.  His last day will be Wednesday.  I stopped when I dropped him off this morning and told his social worker that he was transferring to Memory Care.  She got big alligator tears in her eyes and did everything she could not to cry.  She said, "We love having Gary, he is so sweet".  I responded with the same emotion and she looked at me as if she could feel my despair.  I managed not to cry....I had a conference video call a half hour later and could not risk the mascara and puffy eyes.  There will be time for that after Gary is safely tucked into his new home.

This is all so unbelievable to me.  It is unreal to many who haven't read the blog for a while and casually drop in to see how we are doing.  I think Shock is a good word to describe it. 

Tonight, as we sat on the sofa like every other night, he looked at me and said, "I want to lay down."  I moved around the pillows, laid out the bed pad and made him comfortable.  As I type, he is talking and reading the close captioning on our nightly dose of "MASH". 

Then, there is the reality that my husband has a terminal illness that qualifies him for Hospice care.  Really?  Hospice? That means he will die.  We all do......just not so soon.  He may live two months, two years or more?  No one knows what hell we might encounter before he joins his Lord.  I just pray that he is spared pain....I have enough emotional pain for both of us.

How did the word "Hospice" creep into my life?

Today's events: 
Worked a full day at my job.
Decided on a move-in date for Gary's Memory Care.
Worked with Heather to order and buy Furniture and bedding for Gary's new room.
Got the TB test done.
Did intake with Hospice Coordinator and signed Gary into Hospice benefits immediately.
Signed a DNR for Gary.

Tomorrow consists of doing an intake with the Nurse from the Memory Care unit to give us final costs.

I don't think any commentary is needed.

Thanks to all who have offered incredible assistance.  You guys are wonderful.....you know who you are.

Prayers are appreciated. 

"For Better or Worse" has taken on a whole new meaning.



 

Today started normally....

Today started normally....no wait, it was not normal. Gary had peed overnight in his diaper but had not gotten up nor did a "bed wash" (when Gary is aware that he needs to pee, but is not aware that he is wearing a diaper and pulls out his penis and pees freely around the diaper, thus saturating his clothes and the mattress pad) all night.  We were able to sleep.

While I looked forward to sleeping past 7:00 am, he started counting and reading the Bible verse on the wall.  He read this over and over and counted in between.  I begged him to be quiet and when he finally did, then DIva needed to go out.  That requires arising, adorning glasses, going down a large flight of steps, harnessing the dog and going out while waiting on her to complete her good morning Beagle sniff and pee.  Then back up the stairs which is just enough to get the heart rate going, wake up and have no prayer of going back to sleep.  So, I made coffee and brought it and our morning vitamins and pills to our bedside.

Even though I have done this thousands of times over the years, Gary could not figure out how to manipulate his body to sit up, scoot his butt back against the large pillow and be prepared to swallow pills and coffee. That process was tiring, at best.

Once he had his coffee, I settled in next to him with my phone to post various Father's Day and Adventure pictures of Gary on Facebook.  A while later, we had finished our coffee and I got Gary up to take showers.

Again, hundreds of times we have gone through the same process.  (Post Dementia).  I wash him, shave him, rinse him and he gets out to towel off while I finish rinsing.  Today was different.

Next to our shower is a recessed Jacuzzi which is never used due to it being rather unsafe to get in and out of....so it houses a large Orange HOme Depot 5 gallon bucket, a mop and a long handle shower scrubber.  In slow motion, Gary put the towel over his head, stepped backward either due to leg tremors or just unbalance and fell in slow motion backward into the recessed tub, past the home depot bucket and hit his head squarely on the brass component sticking out the side of the tub.  Naked and wet, his eyes crossed and I said, "Gary, are you hurt?"  Well, it was more like, "GARY, ARE YOU HURT?"  

For those who now him recently he repeats everything he hears multiple times.  So, when I said, "Gary, are you hurt?" one would expect him to say back "Gary, are you hurt?"  Today he said, "Yes, I am hurt."  So buck naked, I knew I needed help and grabbed the closest robe, donned it to cover my nekkkked ass, and screaming for Joshua and Heather to come.

As the three of us managed to maneuver Gary into position and Joshua pulled him out of the tub and onto the now towel covered floor, I saw that he had a huge purple knot on this head where the brass knob gouged him.  He had a large hematoma starting on this side where he had hit the bucket and the mop. 

We got him dressed....I'm sorry to Joshua and especially Heather for the nudity but it had to be....

I dressed, we got him down the steps and into the car and off to the ER we went.  We checked into our normal room in the ER and said hello to the same doctor who saw us last time.  An Xray and CT scan later encountered no head injury and a hairline fracture on the 9th rib.  At 12:30 we left the hospital.

Prior to being discharged, I had the opportunity to tell Gary that I could no longer take care of him and that he needed to move into a "Happy Place".  When Gary was attempting to start the Circle of Life Holistic Healthcare Center a few years back, he nicknamed it the Happy Place.  He did not seem to understand but we went by for a familiarization tour.

He was very hungry so focused more on the Nectarine and cookie I gave him in the lobby.  We walked around and said hello to residents, looked at his room and met the man who will now be his roommate.  Of course, he didn't know it but was very out of sorts partially because he was hungry and was probably in pain. The unit manager picked up the Happy Place analogy and referenced the place immediately as just that.....he smiled.

We left and picked up fast food, went home and ate.  I arranged for Heather to watch him while I went out to the pharmacy to get his prescription of Narcotic pain killers.  I went to the store and found out that the prescription had not been called in.....frustrated, I called the Er and was told that I had the prescription in the discharge paperwork due to DEA regulations.  I spent some wasted time with the ER operator suggesting improved patient service by notifying the patient of said fact......yeah, deaf ears.

Anyway, I went back to the car to retrieve the prescription...sure enough, there is was.  I took it back to the Pharmacy knowing that I would have to wait. ..ok.

Then, I was told the Pharmacist was at lunch and because of DEA regulations (those people have much control) that the PHarmacist had to verify they had the prescription and that she was at lunch.  It would be at least 45 minutes before she returned from lunch and then .....they would text me that it was ready. No one cares that I have substitute caregivers watching my Demented husband at home who have no tolerance for urine issues....

So, I went home and waited.  I ordered several photograph prints off the internet for the wall in Gary's new room.  I chose to put up pictures of us, family but mostly our adventures over the years.  For now, they are all pictures he will recognize.

The phone buzzed signifying the prescription was done and I ascended back down the hill to retrieve the all important drugs.  The poor woman who had received my wrath after telling me I had to wait on the Pharmacist to return before greeted me with a smile and trepidation for what my mood my throw upon her.  I picked up the prescription and noticed that she was coughing horribly and sounded a lot like I did when I had pneumonia.  I caught her offguard when I told her that understood and asked, "Don't you just hate it when you are hacking up a lung and can't stop to the point of gagging and then you squirt pee?"  She was absolutely shocked and then started giggling.... it was a closely guarded secret and we now had something in common.  At least I still have my sense of humor. 

At home, I gave Gary his pain killer and watched him blissfully sit on the sofa for hours.   He never twitched, wiggled or moved.  The power of drugs.

So, during all that, I called the Memory Care facility and indicated that we need to accelerate his admission. I cannot keep him safe at home.  So while he lay like a zombie on the sofa, I began the painful paperwork.  34 pages in all.....I could not finish it all as I was having an important historical conversation with my granddaughter Samantha...our first real talk ever and it was priceless to me, but that is a story for another day.

Thank you Lord for letting my Gary walk away with minor injuries.  I take it as a sign that I need to move more quickly, despite my professional obligations for the next week.  I can do all things through Christ who strengthens me. 

I must carry on.....

In the middle of the night, after 4 trips to the bathroom (two successful, one near miss and one bed flood), I came to the realization that I am near done and that I have made the right decision for Gary and myself that he go to Memory Care. 


I was tired after a long week and when he grabbed onto the posterbed with a vice-like grip to refuse to put on his diaper/underwear, I just begged him to go along with me.  He looked through me and did not change his behavior.  I felt the angst, tears and frustration well up in my chest and move to my eyes.  At that point, I gave up.  Not on the situation of the diaper install but gave up on the whole situation.  I would not be able to do this much longer without doing harm to myself or striking him. 


It is a point in life I never thought I would reach.  I came close after my grandson's Graduation ceremony this week.  I started to cry in front of our new pastor and then realized that there were hundreds of people around.....so, in perfect Ada style, I compartmentalized my emotion, pushed it down and moved on to leave.  Its a technique that I developed years ago in stressful situations. 


In this life situation, I cannot use this technique any longer as it will cause me irreparable harm.  When Gary goes to Memory Care and I have more time to heal, I will seek a good counselor to assure that I am dealing with the grief, anger, fatigue, confusion and responsibility.


In reality, I lost my husband a long time ago.  His body and part of his mind is still here.  I must carry on without him.

What is a GOOD wife?

I am struggling with the concept of living apart from Gary.  Did I say that I am struggling with living apart from my husband of 30 years?  This is going to be way harder on me than him.

I have to think through getting him the right furniture, taking the right clothes, décor and every detail.  I am so busy at work that I am struggling with time to make Doctors' appointments, calling Hospice, etc.  The new facility says they can help with this......ok.  I will try that route or it will not get done. 

I have to do this to preserve myself, my sanity, my job and every other aspect of being a good wife.  What is a good wife?

A loved one told me today that I will never recover from the guilt of making the decision to take him out of the home for 24 hour care.  "Could I have done something else?"  I can see that.  However, that guilt will be less than something happening to him here because he may not have the right care.  I can live with that a lot better.

Gary is my soulmate.  I know and have lived "For better or worse"  even though we actually never said those words.  Instead, our vows said, "when we are separated, only by death, we will be self actualized that so that one can continue independently...."  Wow, how powerful were my thoughts at age 22.  I sometimes think that 22 year old was wiser than me at 53.  Then again, maybe not.

Life has changed so significantly that I'm not sure how to react.  I am preparing to live life without my husband. While I know I am more than capable, it is still terrifying.

Every day is a new adventure.  Today, we had a substitute caregiver.  When I walked her to the door, she turned and looked at me.  She said, "You have a lot to deal with.  I am sorry for you."  I let him know that everyday is a new adventure.

Right now, I'm genuinely tired.  After a full day at work and very little sleep last night, I am shaky.  Lets hope Gary is just as tired so he sleeps rather than talks tonight.  I don't want to have to say "Please be quiet!  Please?" tonight....after all, it does No good.

Sleep well, my friends.

"I miss you like the Dickens!"

Gary is such a giving soul.  In fact, he would give one the shirt off his back if needed.  Above is a picture of us a few years ago cooking thousands of hot dogs at the Convoy of Hope. 

The Convoy is an organization that travels the country feeding the poor, washing feet, giving haircuts, clothes and spiritual outreach.  We did this together once and Gary went one year without me while I was in bed with a fever. 

He is still sweet and loving, just with a different affect.  When I returned home after a 4 day respite, he seemed to know I had been missing and perked up when I kissed him on the head. I was glad that he still connects with me.  It is a bittersweet recognition.

I had made the decision to admit him to Memory Care in July as I need the time to prepare everything.  My heart is broken.

This morning, I was getting him ready for his day at Day Care.  His legs started shaking like a few weeks ago when we thought he was having a seizure.  I managed to get him to the bed to lean against it while I tried to dress him.  His legs were so weak that he kept sliding down the side of the bed.  It was all I could do to handle him from falling on the floor.  I knew that if he sat down, his muscles would recover and he would be "fine".  I managed to get him to the end of the bed to a bench.  He sat there while I went through the normal plan of saying, "right leg.  Pick up your right leg.  Left leg.  Pick up your left leg."  I got his jeans to his waist but could not get him to stand to secure the waistband.  I let him sit there as long as I could before needing to continue dressing him.

After dressing myself and wondering, "What do I do now?  I can't call 911 as this is not an emergency.  How will I get him downstairs if this continues?" Due to recovering from Pneumonia and the physical exertion, I was exhausted.  I kept repeating "I can do all things through Christ who strengthens me."  I said it at least 10 times.

Gary stood with my help, had stopped shaking and as we moved toward the stairwell, he said to me, "I miss you like the Dickens."  The heartfelt statement threw me.  I responded, "Why honey, I'm right here?" He said okay and we moved downstairs....slowly but safely with one hand on the rail and one hand on my shoulder.

I thought about his statement several times in the day.  Did he mean to say it in past tense and that he had missed me?  Or in that moment, did he not realize I was there even though he was talking to me?  What will he say when he is at Memory Care and talks to me and I'm not there?  That is the heartbreaking part for me.  He is my other half even when his half is not functioning well.

I'm sure God will protect both of us and bring healing for the grief.  I think of the people he has helped over the years.  As Christians, we know we are saved by Grace and not by deeds but I am hoping that while here on Earth he can cash in some of those good deeds for peace and tranquility here.  Heaven is handled for him.  He loves the Lord and we still recite the Lords' Prayer most nights.  He still knows it and recites it. 

Thank you Lord for every day. 

Gary Gives the Answer

Today, I have been very quiet. I'm waiting to hear God's advise.  Instead of hearing some blaring voice, I am getting subtle clues. 

As I was lying on the massage table today, I had the thought that I need to talk to an old friend....a friend who has know us since 1989 and better than anyone else.  So, I did.  I called him and caught him completely off guard.  This is a friend who does not follow the blog and is not on Facebook.  I knew he did not know the latest.  I caught him up and explained our current plight.  What a horrible position to put a dear friend in but I did it.  I expressed that putting him on the spot was unfair but that I am living in an unfair world and I just needed his valuable input. 

I asked him what he thought Gary would want.  He answered exactly what I thought he would if I had been neutral all this time.  Gary would not want to be a burden and do anything to cause me pain or trouble. 

In reality, I thought about Gary's master plan to build his "Circle of Life Holistic Health Care Center".  A few years back he was planning for and raising money to build a Health Care Center for victims of Dementia and Alzheimer's.  He wanted a place where patients would consider it a home  while gaining expert care and having an inviting place for the families to want to come and visit. 

Gary gave me the answer waaay back then.  He wanted a place to go so that everyone would have the best possible situation. While he did not have the brainpower to finish the project and we aborted the project, he did know that he was headed there and wanted the best for all concerned. Someday I would like to finish his beloved project.

The places that I am investigating are about 1/2 of the things that he wanted.  They don't have bowling alleys, organic gardens and multiple religious centers.  But they do have good care, low caregiver ratios and access to medical care.  Gary gave me the answer.

Now, I need to do the best thing a wife can do and find the RIGHT place for him.  God will provide the resources and money.  He has led the plan so far.  Why would he let me down now?

I Miss my Best Friend

In my quest to make decisions regarding Gary and his care, I have realized that I am exhausted and unless I change things, I have no chance of making an acceptable decision.  The decision in question is:  Do I continue to keep Gary at home using Day Care and Caregivers for now and move him to Memory Care later or should I move him sooner?  Will he be better off at home with me or someplace where he is stimulated more and I can get more rest?

The question is a deep one.  I have not left him at home at night without me....well, since his diagnosis, ever.  I did decide that I would take four days away and get 24 care for him (whopping expensive) and go somewhere nearby where I can rejuvenate yet be close by the first time.  I am staying about 30 miles from home at a golf resort near the beach.  So far, I can't seem to unwind but had a FABULOUS dinner at a local restaurant and plenty of time to myself.

I went to the beach today just to check out the conditions for going tomorrow.  It was 65 degrees and quite chilly.  Since I am recovering from Pneumonia, I wore my sweatshirt and felt toasty while watching small, shriveled children play in the surf.  Toasty was just fine.

The entire day I tried to stay focused on Gary.  Its not hard because he is so entwined in my life....every part of every breath of every day.  I love him to the depths and want the best for him. 

It is important to remember that the man I look at today is a mere shell of the one I know so well from the past. I tried to talk to him yesterday just to give the respect of telling him that I was going away for a few days.  I told him that I am sick and need to recuperate. I reiterated that I needed to make some decisions for him but did not tell him what.  There is no need.  He just repeated what I said and really had no comprehension.  It made me sad. 

I have yet to have a wide-out bawling experience related to his dementia.  It is coming......I have quick glimpses when watching t.v. or when seeing a couple holding hands.  I miss my life.  I miss my husband.  I miss my best friend.

As I sat in the restaurant tonight by myself, I found my companion to be my phone.  It was so surreal ....I kept waiting on Gary to walk in the door or to walk out of the restroom, sit down at the table and toast to our love.  He never came.  He never will.

Hopefully the next few days will allow me to go quiet and hear what the Lord is telling me when I ask him what to do.  I know he is whispering the answer......I just need to be quiet enough to hear the voice.

The Irony of it All - I have Pneumonia

Two weeks ago when the Neurologist gave me Gary's diagnosis, I had the opportunity to ask about death and the whens-wheres-hows of what could happen.

He indicated and I have done research since that shows the majority of deaths of people with FTD (Frontotemporal Degeneration) die from pneumonia. 

I have spent several days looking at Memory Care facilities and planning ahead.  It is horribly depressing. Then, on Wednesday evening I started coughing.  I pressed through Thursday and Friday at work but went to the doctor this morning to ensure that I still had two lungs in my chest.  He confirmed that I have Bronchitis and "a touch of Pneumonia".

How Ironic?  Was this sickness a self fulfilling prophecy or just a caregiver who works full time pressing too hard?  I think we know the answer.

The hard part of being sick is that my responsibilities with Gary do not stop.  I expressed to him that I am sick and need to rest.  He seems to understand to a point and keeps covering me up and touching me.  I am just trying NOT to breathe on him.

Today, through a series of odd events, I found a website for The Association of Frontotemporal Degeneration.  I read almost the whole site and found other blogs related.  I shared mine and we will see if it makes the publication.  All of a sudden, I have resources that understand exactly what Gary and I are going through with this evil disease. For anyone interested, the link is found here:http://www.theaftd.org/

Why 10,000?

I have only looked at two Memory Care facilities and I'm exhausted already.  Its probably just my attitude and I will work on that .....tomorrow.....tonight I am fighting a cough and cold.

Here is my dilemma, once Gary goes into a facility, I will be footing the bill by paying for the facility and dipping into savings.  I guess that is ok since we worked for savings our whole lives.  I should not expect help from anyone. 

So, for now, we are status quo.  We seem to be managing life now.....I am torn.  The doctors say I am providing great care for him.  He goes to day care, he has a caregiver and I take care of him at night.  He still knows me and I think he is safe.  Well, as safe as he will be anywhere.  If that changes or his condition changes, I will reevaluate.

He did scare me this morning.  When my alarm sounded to my usual "Jesus take the Wheel" alarm sound, I arise and go around the bed to see if he needs to use the bathroom.  Normally, we either go to the bathroom and then back to bed or he stays in bed while I go down and make coffee and get his morning pills.  He usually repeats whatever I say.

Today was different. As I stood next to the bed, he was staring through me and whispering numbers, in order.  I could not break his focus.  33, 34, 35, 36.......I talked to him, asked him questions and tried to get him to respond.  He continued counting through 100.  I wasn't sure what to do.  My thoughts went from "oh my, he just slipped to the next level" to "I'll just go downstairs and come back and he will be normal."  So, I went downstairs and came back in about 15 minutes.  He was still counting......he counted all the way through 3000 before I put him in the shower.  He counted (whispering still) through the shower.  Every time he was interrupted, he started back where he left off.

As we dressed and got in the car, he had reached 10,000.  At that point, he stopped. It was kind of like when Forrest Gump was running in the desert and just stopped.  For no particular reason, he was done.

We had George Strait on the media in the car and he sang "All my Exes live in Texas".  I did not know he knew the words.  Everyday is a new day.  Every night brings its challenges. 

All I can do is pray and trust that God's plan will lead us where we need to go in his time.  Prayers are appreciated.

A morning of banter.

Here is an attempt at sharing the transcript from Gary's banter in bed from around 1:30am to 8:00am this morning.

"I have to pee."

"Okay, I will help you up.  Wait until I get around the bed. Okay, now, stand up.(I have to pull him to a seated position and manage to turn his feet to the floor for standing).  Gary, your legs are shaking like crazy.  How does that feel?"

"Really bad."  As the shaking subsides and his need to pee increases, we move to the toilet room.

"Gary, stand really close to the toilet.  Straddle it so you pee IN the toilet."

"Pee in the toilet.  Pee  in the toilet. Pee in the toilet.  Pee ON the toilet."

"No, stand still and finish peeing....are you done?"

"Yes, I am done.  I am done. I am done."

"Okay, turn around (with guidance) and lets wash your hands. Here, use this soap.  No, not on the toothbrush...on your hands. Okay, now let's dry your hands."

"Dry my hands.  Dry my hands. Dry my hands." 

"Yes, now lets go back to bed.  Sit down right here.  Swing your legs around.  (He is now lying crooked in the bed and I have to move his upper body over to the pillow so there is room for me.) Yes, I will cover you.  Okay, now lets go to sleep."

"Go to sleep.  Go to sleep.  There is a mole on my chest.  Go to sleep."

"Gary, stop picking at your mole.  Here, lets put your hands on the outside of the covers.  Now, go to sleep.....gary what are you doing?  Leave your pajamas alone.  ( a few minutes later) Gary, what are you doing?  Stop putting knots in your pajamas.  Go to sleep.  Here is Diva, rub her head instead. "

As the dog settles down and Gary is distracted by rubbing her ears, I manage to go back to sleep. 

This turn of events including helping him in and out of bed occurred 4 times throughout the night, once without him even peeing.  With the help of Nutritional Supplements, I have learned to go back to sleep each time except for early in the morning.  Then, I just need to get up.  Since this was Saturday and we had the luxury of sleeping in, I tried.

Around 6:30, after a round of the process outlined above, we went back to bed.  I held his hand and tried to return to slumber.

"Honey, where is Heather?"  I was shocked that he realized she was gone from the house for the weekend.  I explained and he seemed content.

Then, he started the following with no interaction from me.
"Alexander is my grandson.  Heather is my daughter.  Ada Mae is my wife.You just don't understand.  Turn the lights on.  Turn the lights off.  I do not have to pee.  Blue water.  Blue water. Blue water.  Diva is a special girl.  A Very special girl.  ...Ada Mae.  Ada Mae.  It could rain.  It could not rain.  Don't pee in the floor.  I can't tell.  I'm confused. 
I really have to pee."  At that phrasing, I arose and started to go through the get-him-up ritual.  As we neared the toilet, he couldn't wait anymore and peed on the floor and the rug leading to the toilet. I rushed him as fast as I could to the toilet to finish.  


I got very angry and started to yell at him and realized there was no point.  It would not change anything for now or the future and it really would not make me feel any better.  So, we cleaned him up.  Mopped the floor and put him back in the bed to watch television while I went downstairs to make coffee and tend to the dog.  Another day in the life.


Today, I donated his drum set to our church.  There was something therapeutic about tearing it down and putting it in the garage for pick up.  It is one less reminder sitting around of the man he once was.  At least, they can use it for worship and I'm sure that has some relevance to God.  He will like hearing Gary's drums played in praise.

Final Diagnosis from Neurologist.....

Lets do a little test.  Get a second hand watch and prepare to time how many times in a minute you can tap your heel onto the ground.  Go as fast as you can for 15 seconds.

Now, multiply times 4.  What you have just done is duplicate what Gary does a majority of any day.  Just a few minutes ago, I timed him at 212 taps per minute.  It is an uncontrollable reaction to his brain sending signals to his leg.

A few minutes ago, I assisted him to a standing position from as seated one and watched his leg shake uncontrollably for a few minutes.  The brain sends signals that the body answers.....it would be miserable for those who are aware of this.....I don't think for a moment that Gary even realizes this is happening.

I received a call from Gary's UCI Neurologist today.  He confirmed after reviewing the MRIs (recent and two years ago) and EEGs and Ct Scans that indeed Gary's brain has shrunk at an " Impressive" rate.  Before, "impressive" always meant something good, but today the word has fatal qualities.

He basically said that the FrontoTemporal Dementia is expected to continue to shrink Gary's brain. Currently, the right frontal brain is shrinking at a significant rate.  This is the part of the brain that controls emotion and executive function. He anticipates that within 1 year, he will need full time nursing care either at home or at a facility.  The weird part is that he complimented me for the care he is currently receiving and inquired if I could continue.  I've never felt good about a compliment regarding dementia care....

I asked the Doctor about long term prognosis and he indicated that Dementia does not kill a patient.  He was very forthcoming to say that Gary will become vulnerable to every conceivable issue...falling, choking, not swallowing, heart attacks, strokes, etc.  Basically, the brain will no longer protect him.  Wow.  Wow. Wow. 

Upon further questioning the doctor said, "if he stops eating or swallowing, you need to call Hospice."  Hospice.  That means death.  I knew that already.

While the diagnosis is not that he will die within one year, it is that life will take on significant changes during that time.  I have four appointments next week to tour Memory Care Facilities.  It is not too early to start investigating options.  I have always said that I will keep him home as long as I can afford it and as long as he knows me......so far, so good.

There is a special guilt that exists in the spouse.....How do I know in the future that he knows me?  What if he 99% of the time does not know me and I put him in protective custody of a care facility and the one percent occurs and he awakes in the middle of the night and wonders why I left him.  Stake through the heart.

On the other hand, I am 53 and need to protect myself and my own health.....is that an excuse not to take care of myself?  I think not. I need to make sure I am healthy and productive to continue paying for all this.

I need to make decisions as they come and ensure that God is in every decision.  Why is it that during these times the human naturally tries to take over and make all the decisions?  God is in Control, Ada.  God is in control.

What about the wedding vows?  I am still loving and obeying.  I remember now....I said "when we are separated only by death..."  What did that really mean?

So, I am spiraling right now.  In two weeks, I am leaving Gary at home for 4 days, 24 hours per day and going to the beach.  I need to do this for my sanity and to dry run being apart.  Pray for me.  Pray for him.  Pray for his caregivers.

Pray for his daughter and son. I am going to go into a closet and cry now.   Oh, that's right.  I can't.  Gary is on the toilet and I need to make sure he is clean and gets safely to bed.  Dementia is hell for everyone it touches.

Thanks to my sister in law Cheryl for being there as an extension of my sanity.  Her love and experience is worth more than she will ever know. 

We are Still Soul Mates

Since I brought Gary home from the hospital he has acted completely normal for him. The difference has been in me.
It could be said that I have been more patient, tolerant of frustrating behavior and less concerned about bodily fluid accidents. 

Even though the scare was short lived, it made me realize how precious he is to me.  He is still my soul mate.  The soul's heart is intact despite the brain being dysfunctional.
He still has a sense of humor.  For example, this morning when dropping him off at daycare, his normal attendant came out to get him from the car and said his normal "Hey Gary....yeah, yeah, yeah.....lets Rock and Roll." I asked Gary if he knew Luis' name.  Gary looked at him for a few moments and as I whispered "Luis" into Gary's ear, he said boldly "Rumpelstiltsken!"  We all had a laugh and then Gary repeated after me and said "Good morning, Luis." I don't always have a chuckle under my breath when I leave him but I did today.

I have a compact disc in the car of a live concert of "John Denver".  One of the songs is a compilation of "Leaving on a jet plane and Good bye again."  They have always been songs that bring a tear to the eyes but more-so today.  They are songs about leaving someone you love to go and do the work you  do.  John sang it with a lonesome, soulful pain that I can so relate to everyday. Love is a beautiful thing.  It is probably the most beautiful emotion I know.  It feels so good and it hurts so bad.

As Gary and I filter through the daily crap dealt by Dementia, it appears that he still knows me well and remembers little nothings that we have shared over the years.  When he was in the hospital, I told him that I love him,  He grinned and prompted me by saying "how much?"
I answered with our common response, "I love you more than you know from the top of your head to the bottom of your toes and everywhere in between.  Do you know what I mean? "  He mouthed along as I said the words. It was a priceless moment.

So, my message to those reading this is:  if you love someone, live each moment with them as if it is your last.  Whether it is through Dementia, death or something else, it can be gone in the blink of any eye.  And for those who know and love me well, I ask a favor.  On days or moments when the frustration of dealing with the disease gets overwhelming....remind me of my own words written here.  After all, I am human.

"Events of Weakness"

event

I am sitting in the hospital room with Gary watching him fidget while waiting to be discharged after a day and a half of observation.  He has no concept that he is being sent home but he is fidgety none-the-less. 

His medical tests all show negative for seizures and his brain apparently does not show the propensity for them either. The doctor is calling it "an event of weakness". So, we take him home and watch him……. Sounds exciting for both of us.

The first step is to toss out his electric toothbrush.  No one knows the connection between the “events” and the electric toothbrush.  For those who know not of the story,   yesterday morning while brushing his teeth, Gary had what appeared to be two very short, intense seizures.  So, we spent the day in the emergency room and then checked him in for observation. 

Something about having a loved one in the hospital does things to the other loved one’s psyche. It conjures thoughts of “what ifs”, it reinforces loneliness and forces the thoughts of “how is this going to end someday?” It even changes how the dog acts.  It changes how everyone acts toward you.  Very strange is this concept of people caring about you but not knowing what to say.

I know for sure that Gary will die someday.  We all do.  The bigger question is what will happen between now and then?  How many trips will there be in the ambulance?  How many times to the ER? How many hospital stays?  The control freak in me yearns to prepare for  all what ifs so life will be easier during those times…..kinda like a fire drill, dry run or a dress rehearsal.  One of my co-workers always tells me to relax and only deal with the here and now.  Is she right?  Possibly.  I sometimes don’t know what to think about if I am not planning, visioning or strategizing.  Meditation seems like a lost art.  I know the art so well but lately have chosen not to enjoy the art….somewhat wasteful of precious time .

I was off work yesterday with Gary but went to work today.  It was so great as I knew Gary was taken care of medically and I could do nothing but wait.  I was so productive it was crazy.  I need the focus of work. 

When I talk to God, I often ask “why”.  Answers do not come.  People tell me that I am strong.  Horse hockey.  I am not strong personally.  I am saved by grace not deeds.

Behavioral Variant Frontotemporal Dementia

Behavioral Variant Frontotemporal Dementia.  Well, there it is....the diagnosis.

Sounds dramatic and horrible.  The truth is Gary is no different than he was before the diagnosis we received on Thursday but now it has a more specific name.  The Neurologist will be further examining his MRI and CT scans to determine if Gary's brain has shrunk.  If so, there is nothing to do but live like we do now.  If it has not shrunk, perhaps his symptoms can be managed with medication and psychiatric treatment. I know my husband pretty well and unfortunately, I'm betting on the brain shrinkage. 

Am I scared?  Not really.  I've had time to adjust so far and know that someday I will be alone. Even though I spend most moments outside of work with Gary, I am still very much alone anyway. 

I decided last week that I would take the day of Memorial day to myself and get a sitter for Gary.  I also asked the agency to send someone over next Sunday so I can go to church and do whatever I decide I want to do.  The hard part is....it has been so long since I've done anything that I do not know what to do.  That must sound silly, but I am still dealing with what I call "dementia guilt".  I feel bad that Gary can't do whatever I do and I feel guilty about it. Yes, I will grow out of that as well. 

Emotionally, I am very fragile but accepting the inevitable.  Dementia is a horrible, cruel disease.  Things will get worse before they improve. I know this.  I hate this.

An evening in the E.R.....again.

Since moving to Anaheim, Gary has fallen over backwards twice from the dining table.  We have a bar height table that has chairs with very long legs that sit on carpet.  Both times, I think he was trying to get up from the table by scooting the chair backward which will NEVER work.  Both times he fell backward and struck a sliding glass door.  So, stop with the judgment on why he was sitting at the table by himself.  I deal with enough guilt without hearing from the readers.  Sometimes, a girl just has to pee.

This last event happened on Sunday afternoon.  Heather and I heard him fall and retrieved him from the chair for a thorough inspection.  He seemed fine.  No more thoughts were encountered regarding his possible injury until I got home from work Monday evening to find a stern caretaker telling me that at day care he fell asleep multiple times.  I found out later that he actually fell asleep during exercise hour!  His "handler" at the CLUB was concerned and told Jessica when she picked him up from Day Care.  She noticed that he fell asleep in the car.  These are not normal occurrences.  So, we ate a quick food bar and went off to the hospital for a check up.

After a long day's work full of mental strain, it is uncomfortable to sit in an Emergency Room and watch your husband watch television and act completely normal while one waits on the test results.  In my heart I knew that he had just been sleepy but the strain and pressure of "what people think or say" is tough.  What if there was something wrong and I did not take him in?  So, I went anyway.  After being released, we stopped for a take-home hamburger and went home.  He was fine......no medical issues except for his normal dementia symptoms.  Thank you, Lord for the help.

Heather suggested that I serve him at a t.v. tray in the living room.  I tried that Sunday evening.....it worked just fine.  So, much for the $3000 dining table imported from the Orient.  It seems as if all the material things we worked for in our lives are slowly becoming less important.  For Christians, it should be that way anyway.  Right?

Gary went back to day care today and I went back to work.  There is no day anymore that can be classed as "just another normal day".   There is no crystal ball that tells me today is the day that Gary forgets how to put on his pants or he needs to be fed all the time.  What will he remember tomorrow?  What will he forget or lose tomorrow?

Everyday is a new adventure.  I wish these adventures on no one.

"Yes, I will feed you pie."

Years ago, Gary and I went to the theatre to see the movie "Driving Ms. Daisy".  It was a lovely film about a rich old woman in the old South who employed an older man to drive her.  They became great friends and after many years, as they aged, one day he assisted her by feeding her pie.  I distinctly remember the conversation Gary and I had immediately following the movie. 

"Honey, when I am old, will you feed me pie?"  I asked Gary so humbly.  He answered without hesitation, "No doubt.  I will feed you pie."

Now, many years later, the prediction is coming true only I am the one feeding him.  Most nights, he has difficulty cutting or slicing whatever I serve for dinner.  I have learned to automatically cut everything ahead of time for him.  In the last few weeks, I have also noticed that he plays with his food frequently.  While I thought he just didn't like it or was star gazing, I was wrong.  One night I picked up his fork and started feeding him and he ate very well and much faster.  I tried again the next night.  Guess what, he has difficulty eating by himself.  So, was the movie an omen for the future?  Maybe.  It could have just been a sign of normal aging and loving your life mate.

Yes, Gary, I will always feed you pie....or whatever else you need.

Verbalizing the Dementia Patient's Brain Activity

We have been blessed three nights in a row with no "accidents" in the bed.  However, last night was very "noisy". 

Here is a sample of what I heard:
"1601, 1602, 1603,1604,1605,1606.  (pause) 10,11,12,13,14,15,16,17,18,19,20.  201, 202,203,204, cinco, seis, siete, ocho, nine, ten.

Be quiet (parroting me telling him to be quiet).  Be quiet.  Just be quiet.  BE QUIET.  Lay still.  Lay Still.  Be quiet.  Be quiet.  Shut up. 

Scoot down in the bed.  Don't hit your head on the headboard (I tell him this when he gets in the bed with his butt next to the pillow).  Be quiet.  21, 22,23,24,25,26,27 .............28,29,30.  I need to comb my hair.  I have to pee."

So, I get up with him and assist him to go to the toilet with coaching of standing close to the toilet so drips go in the toilet, not on the floor.  He stood there for about 10 minutes.  Suddenly, Diva asks to go out so I took her downstairs to take her out.  When I got back upstairs, Gary was fixing his pants and flushing the toilet.  I'm not sure what happened but he had dribbled a lot on the floor and all down his pants.  I took off his pajamas and put them in the shower floor for laundry in the morning.  I put Gary back to bed on top of the new gigantic mattress pad that I bought.

A few minutes later he started verbalizing all his thoughts again:

"Bless you.  Thanks for letting me pee.  1500.  1600.1700. 1800.  Did you hear Diva cry?  No?  Why not?  Is that Diva on the bed?  Does Diva have to pee?  12, 13, 14, 15, 16........501,502......"

After Gary continued counting until 800, I decided to roll over, put a pillow on my head and try harder to sleep.  It just wasn't working.  My big mistake is that I keep talking to him and trying to get him to be quiet, stop talking and just let me sleep.  I know better but after a while my mouth engages and I try again.  "Gary, please let me have a moment's peace and let me sleep for a few minutes.  Please?"

"Be quiet Gary.  Have peace.  Have peace.  Have peace.  Be quiet. "  He did. 

At 6:40 a.m. he asked me to help him go to the toilet.  I did and he started the verbalization again. I covered my head and decided that if he at least laid still rather than wiggle constantly, I could sleep.  He then realized that he did not have on his pajamas and started feeling around the bed.  He thought he had taken off his pajamas and was trying to find them.  I got up and gave him an alternate pair.  Miraculously, I don't know what happened until 9:40 am.  I slept!!!!!

During these periods when his brain activity spills from his mouth, his body motions are very active.  He wiggles, moves his arms, puts his hands through his hair and just moves around the bed.  It is very disturbing to one sharing the bed and hoping to sleep.

After showering and dressing, we walked out our bedroom like every day and he stopped next to the guitars hanging in the hall and asked to play his guitar.  I took it off the wall, dusted it and brought it downstairs for him.  I put him on the sofa with his guitar and he picked at it while I fixed breakfast.  I do not mean that he picked as like in playing the guitar, I mean he literally picked at the strings like he was trying to remove a hair from the guitar.  It was the first time he showed interest in music in quite a while.  I have not put the guitar back on the wall in case the spirit moves him again.

Right after lunch, he crashed on the sofa.  He slept enough that now he won't take a nap. 

Saturdays are hard.  I have so much to do around the house but I always have to keep one eye on him.  Its okay because I love him.  I guess if things get too tough I could just start counting.....one, two, three, four.......

Pure loneliness

It is Sunday.  This weekend has consisted of a tremendous amount of organization, cleaning the garage, many loads of laundry (normal and incontinence related), cooking meals and straightening our "home office".  Gary and I just finished a great meal of pineapple/jalapeno pork, red and purple jasmine rice cooked in Mango juice and garlic sautéed kale and bok choy.  It was a delicious meal and Gary ate every bite....quickly.  The fact that he ate it all in less than an hour was an indication that he liked it.

All this activity and the only emotion I can identify is pure loneliness.  Gary is just a few feet away in the massage chair, Diva is begging for a post-dinner treat and Heather and Xander are in their living room......

Have you ever been all alone in a house full of people?  What is missing here.....Gary's real brain.  He no longer really looks at me.  He still knows who I am but he looks past me unless I hold his chin and force him to look at my eyes.  It is not the same connection. Just like I said, it is forced. Its a horrible realization that your husband is somewhat gone.

So, since he is still here and I feel so lonely, I can't help but wonder what it will feel like when the body is no longer here either?  He is healthy other than the brain so it could be years.  I am thankful for his other health.  For widows and widowers, I wish them peace.  The agony of their death must be of the worst kind of agony.  My loneliness and agony is only half....our dog Diva is so sensitive that she is feeling my pain now....she came and sat next to me as I type and put her head on my wrist.  So sweet.

Of course, its the same wrist that had a trash can lid slammed on it yesterday by the wind when I was cleaning the garage.....it really hurts but her head trying to comfort me is so very gentle. She just switched to licking my hand instead.

God just keeps giving me breaks.  I don't know how or why I deserve the kindness. So, I will stop typing and enjoy my loneliness dissipating.

Finding my True North

Many years ago when we lived in the Bay Area of California, we spent nearly every weekend sailing on San Francisco Bay.  In the beginning, I hated it.  Taking sailing lessons was incredibly HARD work because if you weren't doing it correctly, pulling the lines and adjusting the sails was difficult. 

We learned to sail in preparation for the then coming Y2K crisis.  Remember that?  We knew that if the world as we knew it went to hell-in-a-hand-basket that we would have enough skills and supplies to sail out the Delta, under the Golden Gate and off to paradise.  Needless to say, that never happened.  However, nearly $15k later and a gazillion hours on the bay, we were accomplished sailors.  Except for one thing.


Navigation.  Sure, its easy with a GPS.  But, what if....you are out at sea and lighting takes out your electronics.  Your backup GPS got zapped, too.  So, one must know the old fashioned way of navigating the currents, waves and stars.  We took a navigation class at the local Sailing Club which had never failed us.  (Especially the time I ran one of the boats in to the Berkeley Reef and knocked a gash in the keel.  That is a story for another day.)


I failed the Navigation class with a miserable "F".  I just didn't get it.  Not the math, not the calculations....it just took my breath away and for a while, combined with getting my hand caught in a traveler and sustaining an injury that hurts to this day, I almost quit sailing.


There was one concept of navigation that I did understand and that was the Concept of "True North". Find the following description from Webster's Online helpful:


"True north differs from magnetic north, which varies from place to place and over time due to local magnetic anomalies. A magnetic compass almost never shows true north. In fact over millions of years, magnetic north wanders considerable and occasionally reverses so that the magnetic north pole has been near the geographic south pole at some periods in the earth's history. In the arctic region, a magnetic compass is not very useful.
To find true north from a magnetic compass you have to know the local magnetic variation and how it is varying over time. For ordinary folk this is difficult (although good maps will have magnetic deviation marked on them).
















From Websters Online
Finding true north is essential for accurate navigation. Hence the metaphor.  In life's journey we are often uncertain where we stand, where we are going and what is the right path for us personally. Knowing our true north would enable us to follow the right path."




As a person, I always understood that my True North seemed to be my husband Gary.  He taught me so much about love, life, business and now in his Dementia, how to be a caregiver. 


I always relied on him.  If I was ever having a bad day, I would connect with him and he would put me right back on track, like a reliable compass. 


Now, I realize who I thought was my True North is no longer a viable tool.  Just like a GPS on a boat that has been disabled by lightning, Gary has been disabled by Dementia.  So, what is my back up compass?  Good question and I have an answer.


This morning while watching a televangelist (impossible to take Gary to church), I heard that our True North is really God.  Well, duh.  I can pretend all day that I didn't know that already but I'm not that talented an actress or writer.  God is in control of all this that we call life. My brain and anxiety relaxed ten fold. 


It is important to me that I remember this concept when the waves are crashing and we are headed upwind with a strong current in the fog.  Just turn on the back up GPS and set it to True North. 


Many might ask what this has to do with staying sane as a wife whose husband is experiencing the day to day Hell of dementia.  It has everything to do with it.  I hope that any reader of this blog never has to find out how it feels.  Meanwhile, tune into your True North and enjoy the sail.