Please Don't Leave Me.....

I struggled today trying to decide whether to meet Heather at the gym or go to visit Gary.  I did not leave work until around 5:30 and I knew Heather had gone to the gym earlier so my next decision was "where do I go?"  I decided to stop by Gary's and then go to the gym.  As I arrived at the "Happy Place" there was a fire engine and an ambulance outside.  My heart stopped.

I had no reason to think the emergency vehicles had anything to do with Gary.  I had not received any phone calls.  SO, I parked in the underground garage and walked around to the front door as to not disturb the concierge.  When I walked up the front steps and opened the double doors, out came the Activity Director.  She was obviously leaving for the evening. I looked at her for clues...was there something wrong with Gary?  Why was she meeting me at the door?  Have I made the right decisions regarding his care?  I pictured firefighters standing over Gary and saying, "well, you have a DNR order.  What do you want us to do?"

All those thoughts went through my brain in the split second that I saw the Activity DIrector meeting me.  The reality was, she really was leaving for the evening and was not meeting me to deliver any bad news.  Not knowing that I was going through all this thinking, she merely hugged me and asked how I am.  Boy, did I feel silly.

I walked into the front door and heard the Assisted Living Dog, Buddy, barking at the firefighters who were tending to some poor soul.  One of the angels let me into the Memory Unit and I was sucked past the fears of moments ago into the unit that has become home for my husband, Gary.

He had finished dinner and was sitting in his wheelchair with his butt nearly off the end of his wheelchair in a position that appeared he was about to fall out of the chair.  I saw it as "he is almost in the floor and unable to use his arms to reposition himself and sit up straight."  One of the caregivers walked by and said, "look at Gary chilling!"

I asked a different caregiver to help me re-position him to sit up straight.  She did and he promptly slid, intentionally back to the same position.  I accepted that he wanted to be in this position.  Annie, the dog, jumped up into his lap and began licking his nose.  She turned around and did the same to me.  She positioned herself on his lap and seemed perfectly content to have her ears rubbed as she spied, eye level, the plate of Marion. 

Gary seemed in a far off place.  I was experiencing angst because I wanted to stay with him and I wanted to go to the gym.  They had cleared the dinner plates and tablecloths.  He attempted to put his foot up on the table from that slid-down position.  I told him not the put his feet on the table.   He did not understand.

One of the residents sitting at the table said "Sir, please take your feet off the table.  I eat here.  You eat here.  Be civil."  I realized that I needed to get his wheelchair attachments that enable him to rest his feet in an "up" position.  I went to this room and found his wheelchair attachments.  WHen I returned, one of the angels who takes great pride in taking care of Gary was by his side and noticing the  slumped position.  SHe asked one of the other angels to help her and moved him back into a seated position.  "Poppi, listen to me and sit up!"  He did.

My daughter Heather called from the gym to see if I was going to join her.  I explained that I was still with Gary and wasn't sure what I was going to do.  We had a quick chat and I decided that I would leave him and go to the gym by myself.  I had to do it.  I have to take care of me.

I told Gary that I was going to leave to check on Diva, our dog.  (that is my typical exit line...).  He very clearly looked at me and said in a complete sentence, "Please don't leave me...." I asked what he said and he repeated the plea.

Wow, the emotions continued to run rampant.  I pulled up a chair and sat with him again.  He had a very tight grip on his sweatpants waist tie with his teeth.  I pulled the cord out of his teeth and substituted with the activity blanket.  He started buckling, unbuckling and zipping the blanket.

I felt trapped. I walked away for a few minutes and joined some of the lady residents at the table where one of them was very frustrated that she did not have the money to stay there tonight.  She could not understand why her son was not coming to pick her up.  I explained that we are all staying tonight and that she could stay with the other ladies.  Debbie reassured her that she was safe and that they all stayed there everynight.  She also told her that she could lock her door if she was afraid.  I told them all a joke and made them laugh.

The laughter caught Gary's attention which caught my attention.  I sat with him for a few more minutes and again told him that I would be back tomorrow.  I felt like bursting.  He said goodbye and I left.  I chatted with a friend via phone as I drove to the gym.  When I reached the mall with the gym, I kept driving and came home.  I had no energy for the gym.

I was low.  I came home, ate dinner and sat down with a cocktail.  I am overwhelmed with the heaviness of life with Gary, job and attempting to take care of me.  None of it fits.

I am still feeling as if I don't know what to do.  I cannot "Be Here NOW".  No matter where I am, I feel like I should be in the other place.

I am thankful that Gary still wants me to be near him and asks for my company.  But when I can't bear to stay with him and he begs me to stay....it is too much.

So, I am going to bed.....I will pray for peace and for Gary's healing.

Today, I cried with Joy.

The Calvary Chapel Minister and several members of their congregation come every Sunday to visit the residents at "The Happy Place".  I got there today about 50 minutes before them to cut Gary's nails and have some private time.


When we were in his room and I was cutting his nails, I talked to him about how angry I was feeling today.  I got very emotional and cried while I was doing the filing.  He just looked at me and I realized how absolutely silly and selfish I was being.  I will not do that again as there is no release in talking with him anymore.


He seemed very alert today.  That was confirmed when the guitarist started playing "Blessed Assurance".  I was singing along and realized Gary was too.  He sang every word with his eyes tight shut. 




"This is my story, this is my song,
Praising my Savior all the day long;
This is my story, this is my song,
Praising my Savior all the day long..."


Then, the guitarist played "Nothing but the Blood of Jesus".
 "What can wash away my sin? Nothing but the blood of Jesus.
What can make me whole again?
Nothing but the blood of Jesus.
Refrain:
O precious is the flow
that makes me white as snow;
no other fount I know;
nothing but the blood of Jesus.

2. For my pardon this I see:
nothing but the blood of Jesus.
For my cleansing this my plea:
nothing but the blood of Jesus.
(Refrain)

3. Nothing can for sin atone:
nothing but the blood of Jesus.
Naught of good that I have done:
nothing but the blood of Jesus.
(Refrain)

4. This is all my hope and peace:
nothing but the blood of Jesus.
This is all my righteousness:
nothing but the blood of Jesus.
(Refrain)  "
(thanks to Jerry and Vonna Copp for playing this song so frequently at Cornerstone Church in Elk Grove Ca.   I know Gary was hearing their voices today!)


Gary never opened his eyes but sang every word as he held my hand tight.  It felt so good to know that he still has some of those old memories in him and that he still loves Jesus.


As the pastor prayed, Gary was very in tune and repeated several phrases along the way and recognized Psalm 23.


It was a settling moment.  Even though we don't pray together every night like we did, there is some solace in knowing that we did for years.  I am convinced the salvation for him is there.  I cried with joy today.

The Look Says it All....well, not really.

I started the day with Alexander and Heather (daughter and grandson) at the Aquarium of the Pacific.  We got there before it opened and were finished with all the exhibits by 11:00.  As I walked past the many large aquariums and could not help but think of four years ago when Gary and I went to the aquarium in New Orleans.

For a moment, I was melancholy.  I quickly told myself that I have to move on.....I have to have fun without him.  I did.

After lunch and a nap, I dressed and headed for "The Happy Place"  Luau.  I had taken Gary's tropical shirts yesterday and when I got there, he was dressed and ready to party. 

His FTD has changed his whole personality and he often has a look that crosses between Angry and just plain confused.  But sometimes, it appears that his eyes are dancing but his face does not match.  It is certainly a brain functioning differently than the normal person.

The outer part of the Assisted Living Facility was dressed completely in a Luau setting, complete with roasted pig. Since they had the memory unit decorated also, I decided to stay there and get his dinner.  He ate Fried shrimp, coconut rice and veggies.  I left and got my plate and ate at the table with Gary, Nancy and Marnie.  Everyone seemed upbeat and all were dressed festively!

After eating, we moved Gary out to the courtyard where the Ohana Singers and Dancers were going to perform.  They had saved 8 seats for the folks in Reminiscence and they were great seats.  Gary seemed to understand something different was going on.  One of the angels brought over "hurricanes" and Gary voraciously drank his.

I noticed his eyes in the picture.  The feeling I was getting after knowing Gary for 31 years is that he was content, happy and ready for a concert.  His eyes are intense.  This is the flat look we get now. 

We had a fantastic show with dancers, great music and lots of laughs.  As soon as it was over, we took Gary back to his unit.  They had moved all the residents who had not gone to the show to the window so they could see and hear.  They were all trying to move back to the main room.  It was total chaos.  All but one of the angels was busy with the other residents changing diapers and assisting with toileting.  The angel in the main room took the total chaos and treated the room as  human tetris.  She moved them all, one by one to the sofas and did so with care and speed.  She had the room organized in less than 10 minutes. 

Meanwhile, the Mayor was having a bad evening and was constantly asking when he could go home.  He wasn't sure how he would get a ride to Placentia, CA since the bus had left.  Marion was upset that her nail polish had been moved. Many of the others were upset about something.  This angel simply smiled and got everyone settled.  I parked Gary's wheelchair and assisted by putting in a funny Carole Burnett video. I kissed Gary goodbye and escaped.

As I drove home, the seriousness of my life changes set in as a reality.   I have no mate.  He is lost in a body that has a partially functioning brain.  I am sad.  I am very sad.

I often wonder what Gary is thinking.....I will never know as he can no longer share .....I can only hope that his thoughts are of good times and that he knows he is safe, well fed, entertained and loved.  I do know that he feels love because his eyes smile when I tell him I love him. Today he said quietly, "from the top of my head...."

I hope we both sleep well tonight in our respective beds.

Gary is feeding himself!

It has been reported by caregivers, that the last few days, Gary has mostly fed himself.  Messy though he is, he is feeding himself.  I am grateful that he is in a period of being independent. 

So, I struggle with when to visit him.  I slipped into a convenient pattern of going to visit during meals and feeding him.  It was easy to rationalize that I am helping him and then leaving immediately following the meals.  So, now that he is aware (I think) that I come to feed him, will he eat by himself with me there?  Do I need to change my schedule to not impede any progress he is making?  What will happen tomorrow?

I stopped by this morning on my way to work to take a waterproof pillow cover for the pillow for his wheelchair.  It is a great pillow full of foam and support.  I do not know from whence it came.  It just appeared. I can only assume it came from Hospice.  Anyway, it needed a waterproof cover in case of accidents.  So delivered.

While I was there, he was mumbling something.  I tried many times to clarify what he was saying.  No success.  So, as I was leaving, I told him I loved him and he broke into a response that only he and I share.  He was there.  He was present and his speech was very clear.  If the only times he is clear is when he is feeling love, I will take it.  I wish I could duplicate it all the time so he could live normally.

This is such a cruel disease.   He will never live normally and sometimes I think neither will I. 

Empty Eyes from the Devil

Tonight's empty eyes were courtesy of Fronto Temporal Degeneration.   I hate the disease with all that is in me. 

I know it is not right to hate and I know that God would disapprove....but GOD did not create this disease....it is of the Devil....Satan.....

I got to Gary late in the Dinner process as I was having a magnificent day at work.  I left and went straight to the "happy place".  For me, it was not happy tonight.  Gary had finished dinner and was fed courtesy of one of the angels.  He had his activity blanket on his lap and spent the 45 minutes of our time together looking away from me and chewing on the ribbon from the blanket.  At one point, he attempted to put the ribbon through one of the rivets on the blanket.  I helped him put it through and he went right back to sucking on the ribbon.  I could tell that in about 20 minutes, he would again attempt to put the ribbon through yet another rivet. 

I could not take it.  I looked around and saw all the lady residents had hairdos today.  They all looked fancy.  Some have life in their eyes....others don't. I kidded one of them by asking if her boyfriend was coming.....she said that she was loyal to her husband who died and that she would never have a boyfriend.  She put me in my place.

One of the other residents had a beautiful up-do that looked magnificent from the forehead up.  Otherwise, she is bruised from a bad fall and her entire face, two weeks later is entirely green.  I know she is in pain.

Meanwhile, I looked again at my husband. He was not here today but somewhere lost in chewing on a ribbon.  I realized that sitting there with him was not productive for anyone.  As I arose to leave, they let Annie the dog into the room since dinner was finished.  She jumped on me and was incredibly happy to see me.  I picked her up and got lots of puppy kisses.  It was the time today when I felt something for the first time. Puppy kisses, really?

I told Annie to stay as I stumbled out of the Memory Unit.  Boy, did I feel lost.  What am I doing?  I go there every night trying to find some sense of normalcy.  Currently, it does not exist.  I am in a place of near purgatory.

I have to find a place of comfort.  I have to find a place of comfort.  I have to be comfortable. 

Poor Gary. He sits in his wheelchair, often with his shoes kicked off.  He looks permanently to the right and stares at whatever is in that path.  He still tells me he loves me but it is more habit than feeling.  I am thankful that the activity blanket occupies his time. 

Who would have thought 31 years ago that I would be thankful for an activity blanket to give my husband satisfaction?   Dementia is a disease from the Devil. 

The Angels among us!

I visited Gary many times this weekend.  Friday night.  Saturday morning.  Saturday afternoon. Sunday morning.  This is becoming a habit.  Not a bad one.

The events of the weekend at "The Happy Place" gave me cause for pause. Saturday's visit started with me driving up the street toward the building and seeing the Care Manager, Annie the dog and two of the very mobile residents, Debbie and Marnie, walking down the sidewalk toward the retail center on the corner.  I parked my SUV and walked to join them.  They seemed happy to see me and the two residents appeared to recognize me.  (Guess that makes me a "regular"!)  We walked and talked in the morning sun.  It was nice walking with them.  Annie was busy sniffing everything and barking at anything bigger than her.  The two ladies were holding hands and I was just enjoying being with loving people.

After returning, I thought it was nice that Debbie brought me a glass of water!  I said hello to Gary and proceeded to trim his ever-growing fingernails.  Afterward, I wheeled him back to the main room to get in position for lunch.  I watched the Care Manager reading the case files for the day while she held hands with one of the other residents who was having a hard time coping with....well, something. SHe just held her hand and read.  I really don't think she realized how sweet that gesture actually was.  There was no agenda, no rules, just love and calm.

Later, one of the other caregivers came over to tell me how she had taken Gary to Zumba class one day.  While he can no longer walk she encouraged him to work his arms and enjoy the music.  He seemed to understand our conversation.  We spent some time with this activity blanket and then I fed him a spectacular lunch.

Shortly thereafter I realized I was hungry and visited the local sandwich shop for a grilled cheese.  I eat at the counter so its quicker and the waitresses don't seem to care that I usually don't want to talk. Today, as I paid for my meal, I told the cashier that the grilled cheese was becoming a bad habit.  For whatever reason, I felt it important to share with her that I was a regular here on Saturday because my husband was in Memory Care at Sunrise.  She seemed interested and I shared my new "Blog cards" with her.  I ordered business cards that give people the address to this blog.  I am determined that it will help others.

I left and went to the movies.   Going by myself is the only way I get to go, so I suck it up and laugh or cry by myself.  I'm glad I like me.  It would be more difficult if I didn't.  :)

I headed back to the unit as I had an hour before my massage appointment.  Gary was napping so I sat on the sofa and watched part of a movie with Debbie and Marilyn.  It was a Disney movie and they (and I) were disappointed when it was time to go to the tables for dinner. I am helping them train Annie the dog to take a nap on the sofa rather than be put outside during meals.  Three meals she has done this....so far, so good.  I started to feed Gary and Debbie but had to leave. 

The massage was delightful and much needed.  Even caregiving when your loved one is in Memory Care is tiring and stressful.  I'm not the one changing him and cleaning him.  It was easy letting go of that part of FTD.

I went back this morning and got there as the angels had a down moment and were sitting at the table.  All the residents were gone with family members, at the ballgame, sleeping or just sitting quietly watching the football game on television.  The caregivers looked guilty for sitting there.  I embraced two of them and encouraged them to rest their wings. 

I trimmed Gary's moustache and encouraged him to use his activity blanket.  Today he was interested in the ribbons. 

The Care Manager was playing music as she rubbed lotion on the hands of the residents who were there.  In between songs, someone said something about summertime.  I started singing Summertime from "Porgy and Bess" and Marilyn and Wilma joined in singing.  It was delightful. Marilyn always had a great appreciation for the old, sing-able songs and always reminds me that her Mom taught them to her when they were "at home".  I never quite know if she knows her Mom is long gone but it doesn't matter as the memories are obviously pleasant.

As the angels were serving lunch, a particularly upbeat song was playing and one of them started dancing around the tables and making the residents smile.  The joy they provide to their residents is remarkable.  At one point, I must have been frowning in my thoughts.  One of the residents from across the room motioned to me to smile.  Remember the one who had a tendency to be "mean"?  It was her!  Said yelled across the room "SMILE.  You have such a pretty smile."  I smiled the rest of my visit....just for her.

It is amazing that I have become so enamored with these people.  I never knew how important and environment is, not only for the one suffering personally with Dementia but also for the families of the ones suffering.

I thank the Good Lord that I found Gary's "Happy Place".  God helped me make the decision to move Gary from home to the Unit at just the right time.  Only he knows what tomorrow will bring. 



Activity Blanket and Rubics Cube

After work I stopped by "the Happy Place" to see how happy it really was today.  I was there in time to feed Gary his pumpkin pie and watch him hold his own glass and guzzle down all his water and juice.  He was at the table with Nancy and Martha. 

Nancy was very sleepy and not very interactive tonight but the angel feeding her and I had a great chat.  I really adore all the angels/caregivers and pray for their well-being.  Martha was voraciously eating her pie with a vigor not often exhibited by her.  She actually smiled when I said hello and answered a few questions.

Gary seemed particularly alert so I wheeled him into one of the living rooms to attempt to have some time together without distractions.  We were sitting right outside the manager's office and she gladly joined us when I asked some questions.  She brought Gary a Rubic's cube that had been purchased for him to play with when they go places on the bus.  The idea was to keep him from playing with his seat belt.  He started to twist and pull at it as she left to retrieve another item from his room.

They had also purchased an adult activity blanket that was covered in buttons, zippers, pockets, etc.  She said that he spent quite a bit of time with it already and it seems to keep his attention.  I am so thankful they are thinking of activities for him.  Apparently, music therapy went well yesterday culminating in him playing his bongo drums.

I sat with him a while longer and watched him get accustomed to playing with the cube.  I then rolled him back to join the others in watching the movie "Happy Feet".  It caught his attention and I kissed him goodbye and left to run my errands.

These times with him are so bittersweet.  I am thrilled that he had great care by people who obviously like him and are invested in his comfort.  They are heart wrenching because I want him to get up out of the chair, throw his arms around me, kiss me and say, "lets go have some fun!"  I am dreaming and realistically know that will never happen.

For now, I have to be happy that he can touch his activity blanket and find "orange" on the Rubics cube.

Why do I feel so Empty?

Its been a long day.  Its been a long week.  Its Monday.

Dementia continues to be the ever present issue of everyday.  Not for me, but for my husband, Gary.  I stopped by "The Happy Place" on Friday evening which was also our 31st anniversary.  I had planned to feed him dinner and roll him out to the courtyard for some private time.  As it turned out, I fed him dinner and I had no energy nor interest in moving.  So, we sat at the dinner table, held hands and I attempted to hear Gary's mutterings. 

He is very difficult to hear when he starts his under-the-breath talking.  I never did hear what he was saying.  I gave up and left.....came home and had dinner and some wine.  What an incredible situation I have found myself in.......53 years old and no one to share my marriage with....

I visited him again on Saturday but after shaving him, trimming his moustache and beard, I have to admit, I lost interest.   He looked good and seemed to be happy after lunch.  I left.  Seems like I do that a lot.

My daughter and grandson took me to play Putt-Putt and for dinner.  It was Xander's first experience and he had a good time.  So did I.  We went out for dinner and I celebrated with two 40th anniversary (of the restaurant) Margaritas.  It felt good.

As Sunday came and went, I found myself just as apathetic about visiting Gary. My sister called when I was on my way to Gary's to tell me my Dad is in the hospital very ill.  That fact lent itself to lots of questions about life and death.

I visited for the two hours needed to feed him and do whatever activity is offered during that period of time.  I came home and spent the rest of the day reading the manuscript of my friend's novel. It was a fascinating contrast to my current life and it was good to get lost in someone else's problems. How sad.

Today, I went to work and stopped by Gary's after my chiropractor appointment.  I lasted about 45 minutes.  He was muttering and spent a while holding my hand.  I was so sleepy and tired that I almost dozed off.  So, I came home and ate chicken, green beans and cucumbers.  I settled a security concern that has lasted all afternoon at the college.  When I reference vendors as "idiots" three times in 2 hours, you know its bad. 

As I sit here taking solace in watching M.A.S.H., I find that I am generally numb.  The emotion that I do feel is often melancholy.  I am not sure what the future holds.  I am blessed to have a good job, a good brain, good health and great roommates!  Why do I feel so empty?

Happy Anniversary Gary!

I have to admit for the first time in 31 years, I am not looking forward to September 9.  On September 9, 1985, my 22 year old self married Gary Gerard.  He was 37, had been married three times, had two children from different wives and eyes that dropped me dead in my tracks.

People thought it wouldn't last.  Boy, did we show them!  On our wedding day, we had no money so we picked our own flowers and put them in a circle by the lake at Stoney Creek.  By 5pm, in 95 degree heat, they had wilted.  At 6:00pm, we had a tremendous lighting storm for our wedding-by-the-lake.  At 6:45, we got sunshine and the flowers had re-hydrated.  The ceremony was perfect.

The best man, who was an avid fisherman, cried during the ceremony.  Not because he thought the ceremony was beautiful, but because after the rain, all the trout were feeding off the top of the lake and he did not have a line in the water!  During the ceremony, Shane was our guitarist and was apparently daydreaming because the minister had to clear his throat to get his attention to play our favorite song......"There is love".  One thing that has remained for 31 years is that our love is always there.

So, 31 years later, Gary lives in Memory Care and I continue to work 50 hours per week and visit him, feed him and cry, near daily.  Every anniversary we have always done something special.  Every 5 years, we took a BIG trip.  Here are some pictures of previous anniversaries:

10 YEARS  - no pictures but we went to Costa Rica and had great memories in the rain forest, at volcanos and bird watching.  During the same year, we took a Windjammer Cruise to the Virgin Islands, lived through a hurricane and attended the best private party EVER.

15 years - we back packed in the High Sierras for 10 days and saw no one.  On day 11, we spent the night at the Yosemite Ahwahnee Hotel Penthouse.  He surprised me!

And then, on our 20th anniversary, we went on a Pirate Cruise to the West Indies.  We saw 7 islands, spent 7 days in St. Lucia, lived through a hurricane at sea and had a blast.

 

 

On our 24th anniversary, we attended a Release Technique Seminar at Asilomar in Monterrey.  Gary had been preparing to climb half dome and hiked for miles on the beach.  It was a great time, despite the fact that he contracted a horrible cold that absolutely effected his hike to Half Dome.

 

 

The 25th was extra special in that we visited Costa Rica for a week, bought our second international property and visited our home in Panama for a week.  We never spent a lot of time there because our plan was to retire there.....big mistake....now, we will never live there together.

 

 

 

 

 

 

 

These pictures speak volumes of our spirits, our love of adventure and our appreciation for our marriage.  I am so grateful that we lived like we did while we could.  These memories will sustain me.

 

So, tomorrow, our 31st anniversary, there will be no trip.  I have a work commitment and may not even make it to see him.  On Saturday, we will celebrate our anniversary by wheeling him outside and sitting in the courtyard of "The Happy Place."  I choose to accept this as a suitable anniversary.  My husband is still alive and still knows me. 

 

Tonight, I visited him and watched him play with the drawstring on the right leg of his sweatpants for almost 20 minutes.  I tried to get him to sit up straight.  That lasted for 30 seconds.  I gave up, kissed his forehead and came home.

 

Tonight, as I write this tribute, I feel hopeful. Each day becomes more devastating in knowing that his brain is shrinking and that he will die.  I have hope that he will be made whole in heaven and we will experience our greatest trip of all.

 

Good night my darling.....happy anniversary.

I'm able to squelch the tears for now....

Today was one of the roughest I have had in a long time.  I think I've been fooling myself. That idea that "I stay numb" is basically horse hockey.

I awoke to hear that one of the major school systems in the United States was abruptly closed by the company due to pressure from the feds....no due process.  Is this America? 

That news sent me into a tailspin as it happened to my former employer last year.  I moved so quickly to find another job, move and deal with Gary's illness that I never processed it.  I never dealt with the emotions.  It hit me today.

If I pushed out sheer exasperation once today, I did it a thousand times.  I ate like a pig and was on the verge of tears many times. 

During the day, I got things done.  I worked on my budget and wished I could talk to my husband.  In the old days (pre-Dementia), I could call him and he would talk me through this stuff.  After a short counseling session, he would get me back to being peak production rather than just getting the job done.  Not today.  My husband suffers from FTD and can't carry on a conversation with me about anything.  Adding to the depression was the ever present saying running through my head that says, "FTD pisses me off!"

I am mad, angry, pissed off, disgusted and all the other negative emotions one can feel.  So, what does one intelligent wife do in such situations?  She goes to visit her husband after work.  Mistake.

I found Gary being fed his dinner at a table with different residents tonight.  My resident friend from Mississippi was in a talkative mood and giving me updates on Gary.  He had eaten everything given so far and chewed thoroughly.  The caregiver feeding him laughed at the resident's report and was glad when I took over the feeding.

Gary was seated in his wheelchair as always but today looked different.  He was leaning to one side....the left.  He never straightened up.  I got him through all but one bite of dessert.  One of the angels walked by the table.  I had brought her a book written by my friend that discusses her emotions regarding the death of her son.  This caregiver also lost a son and I thought she might like it.  I stepped away from the table to give her the book.  We had a short but sweet chat.

When I returned to the table, the resident sitting with Gary had fed him the rest of his pie and made sure he drank all his water.  Even though she has dementia as well, she knew to take care of my Gary.  She seemed to know that he always eats all his food and that he doesn't talk much. 

I looked at him and just could not stay anymore.  After the emotional day I've had, I simply asked to be let out and walked away.

Again, the numbness took over.  Right this moment I feel like running down the street screaming at the top of my lungs.  It would do no good.

I am so blessed to have a great job that I like.  I don't have any friends here as I have had no time to make any.  If I look at my life from 10000 feet, it is a good life.  So, what is my problem?  I am human and my heart aches.  I am able to squelch the tears for now....but they will be making an appearance very soon.   The dam will only hold for so long.

I needed to escape.

"I don't know how you do it."  It is amazing how many times I hear that or read that related to my coping with Gary's disease.

It's easy actually.  I stay numb most of the time so it is not hard coping.  Yes, my husband of nearly 31 years suffers from Fronto temporal Degeneration and as of two months ago, lives in Memory Care.  We no longer live together.  He still knows me but is mostly non-verbal.  The words that emit from his mouth are either words that he hears in the background or answers to basic questions.  For example:  today, when asked whether he wanted a hamburger, hot dog or ribs, he responded, "Hot Dog."  When asked if it is good, he says, "Yes, very."  

It is difficult trying to have a conversation anymore.  That luxury is non-existent.  When I walked into the unit this morning, I was relieved to not see him sitting in his chair attempting to crease his pants.  Instead, one of the male angels had him sitting at a table and putting together "a underground water system" made out of a children's pvc pipe kit.  Gary was credited with making about 15% of the construction.  Those pipes kept him busy through a lot of the morning. 

Debbie shared her adult coloring book with me and we colored while Gary put together pipes.  I found it funny that Debbie kept looking at the front of the coloring book and referenced it as "cheating" since she was copying the color combinations.  I suggested that rather than cheating that she consider it a "color guide".  Being a good Christian woman, she liked that idea.

Then the Therapy Dogs came to visit.  Gary touched every dog, with some encouragement, and he really seemed to like the experience. He sparks to a little better level of sanity when he is around the dogs.  When the unit dog Annie realizes I am there, she jumps and wants to be held.  We have developed quite the relationship for a grown woman and a puppy.  I always hold her to Gary's face for a kiss and he always responds.  She knows that each resident needs her.

I experienced my first resident today who is bitter and has a propensity for being mean.  She sat at our table during lunch.  Gary was tapping his legs repeatedly and it was quite annoying.  I have become numb to that as well.  But when I watched this woman get aggravated, I again let down my guard and felt annoyed as well.  She said, "Stop him from tapping.  He is doing that on purpose!" I started to get angry and realized that she just doesn't know.  She can't remember from one minute to the next....well, anything.

In true wife-form I explained to her that Gary could not help it.  I said that his brain sends signals to his legs and he taps.  I asked her to try to accept it.  She said, "Okay, I will try."  This same woman was particularly needy when it came to her needs.  She came to the table late.  I was busy feeding Gary and Nancy their soup.  Since I'm at the table, I help her, too.  It gives the angels time to do other things.  She watched me feed Nancy for one, two, three, four spoons full of soup and politely said, "when is that guy going to come and feed me?  You have your hands full."   She does not need assistance eating but is certainly jealous of the attention.

The male angle came over and took her food order.  All of a sudden, instead of an old woman, I saw a young child who was very afraid of being alone.  As the angel walked away to get her some chips, she said, "Don't forget me.  Please come back."  I could only imagine what was going through her Dementia-mind.  I talked to her quite a bit, in between feeding Gary and Nancy.  This woman was bitter but I could tell it was the Dementia, not her spirit.   At one point, she pushed her plate away and snubbed the dessert.  She was never going to be happy. 

So, I go on.  I helped Gary finish his lunch and decided that I needed to escape. I can only take so much.  After sneaking out the door, I wandered to my car and to the store and home.

A few hours later, my daughter Heather and grandson came home from their weekend trip.  As I sit here, things are back to the new "normal".  Whatever that is.....I'm not sure I like it.  Don't get me wrong, I am not referencing Heather and Xander. Having them here is a comfort.  I am talking about going into a very busy week that also happens to be our 31st anniversary.  How depressing is that? 

So, to answer the question, "how do you do it?"  God's grace is the only way. 

No More Misery Today

I have a long weekend off work.  3 days.  So, what to do?

I decided to take some time and do something fun or at least interesting.  I slept late, stopped for breakfast and headed to Yorba Linda to see the Nixon Presidential Museum and Library.  I knew roughly where it was as I had seen the signs every day going to visit Gary.  I drove right past it!  I have driven past it 100 times since we've lived here and never knew it was tucked right off the major road. 

Upon walking in, I realized that it was under remodeling.  The admission was half price due to most of the Library being closed.  My luck.  I looked at the movie which was fascinating, saw a reproduction of the East Room at the White House and walked through Nixon's boyhood home.  Humble beginnings for such a great man.

I left and headed to see Gary.  Around 12:15 I walked in expecting to see the residents at lunch but they were running behind today.  Gary was dressed warmly in a hoodie with his white socks and summer sandals.  He puckered up for a kiss but showed no visible emotion. 

I sat beside him and fed him his lunch.  He ate voraciously.  They said he had played his bongos that morning and had been "talkative".  One of the caregiver/angels Loraina was feeding Lucy and we had a nice chat about what Gary used to do.  He listened quietly and never said a word but I am sure he was hearing.  He repeated nothing.

A young mother came in with her three young daughters.  Apparently she comes often and is teaching the girls to visit the elderly and to read stories to them.  The youngest was five and helped her mom read a story.  I was amazed at her development.  The other two girls were also quite advanced for their age and enjoyed the visit.

At one point, Gary moved out of his head and reached down to touch Annie, the dog.  He smiled and said, "Yeah, Yeah, Yeah."  After the dog walked off, he retreated back into his thoughts and didn't say anything else during my visit.

When one of the angels put in a movie around 2:00, I kissed Gary goodbye and left.  I felt so empty and alone walking down to the parking garage. I felt guilty leaving him.  Perhaps I should have stayed the whole afternoon.  Everyone says that I should live my life.  That's easier said than done. 

I stopped by the store to buy some things we need at work and then I came home.  Yesterday, a novel that I have been wanting to read was delivered.  I read about half of it and got so depressed I almost cried.  Almost. 

I couldn't take anymore of someone else's misery today so I left and got my nails done.  No matter what I do, its as if I am in search of a feeling.  I don't feel incomplete.  I don't feel complete.  I miss my husband but I can't seem to sit in that room with him for very long.  I feel sorry for him that he has to stay there but I really don't think he knows the difference or cares.  I used to live by the motto "Be Here Now".  These days, it doesn't work.  I just can't get settled nor comfortable.

I firmly believe that God has a purpose for all this.  There is some reason Gary has FTD and that his brain is shrinking.  There is some reason I married him 31 years ago (next week).  We have a fabulous love and marriage.  Some day I will know what the purpose is......right?

Angels on duty

Tonight's visit was pretty normal.  I got to the "Happy Place" nearing the end of the dinner shift.  One of the angels (caregiver) was sitting between Gary and Janie and feeding them both.  There was not really a space for me so instead, I let the angel, Jorge, continue to feed Gary as I sat across from them and observed. 

The Mayor was also at the table and in rare form.  He was picking on Jose by insisting that Jose was really taking portions of the pie rather than feeding it to the "tourists".  Jose and I had a good laugh while he continued to feed the two residents. 

Gary had very little reaction tonight.  No smiles, no frowns, just eating and feeding.  He did reach for his own spoon and fed himself blueberry pie.  He had difficulty chasing the pie around the plate so Jose helped him.

Jose told me that he was on duty this afternoon and his job when he arrives is to make sure his residents are clean and changed.  Today, he had another male helper and said that when they were helping Gary, they explained to him that they would perform hygiene.  Gary said okay and proceeded to stand up by himself.  They let him do what he could do.  His muscle strength is still there.  Overall, Jose feels Gary is doing well and he is always cooperative.

I sat there for awhile and realized I was hungry.  So, I kissed Gary goodbye and asked to be let out of the unit.  I stopped to pet "Buddy" the Assisted Living Dog and proceeded to the garage.  As I got to my car, there was a man in scrubs getting out of his car. He asked if he could park where he did and I answered to the best of my ability.  I asked if he was new at Sunrise.  He indicated that he worked for a Hospice agency and he was there to admit a patient.  I told him that I was thankful for his work.  He smiled and moved on to the unit.  As he turned around, I caught a glimpse of his Angel wings.