Tuesday, September 22, 2015

Melancholy revisted....

Today was Tuesday.  My day was to consist of taking Gary to his day care, going to a breakfast meeting with my team and then to a normal day of meetings.  Right before I walked to the garage, I picked up the new cd delivered yesterday and popped it in my car recorder to add to my collection.  John Denver Live.....wow, I'm not sure if it was a blessing or a mistake.

As John's smooth voice accompanied Gary and I down the hill from our house and through Anaheim, Gary sang along to "Rocky Mountain High", "Country Roads" and "Poems, Prayers and Promises".  He never saw the tears running down my face, but just kept singing.  I was experiencing total melancholy.  I knew it and tried to connect with the true emotion coursing through my veins.  I identified it as grief for having lost the man I married, grief for my former life as a College President for Heald, and shock of a new job, team and home. Some of the music I so relate to growing up in the 70s and 80s at the foot of the Blue Ridge Mountains in Virginia.  There is always solace in the valley where I was raised.  I was homesick for Virginia, for Sacramento, for Panama and for what "used to be".

I don't think my melancholy and grief have any correlation to my new life.  I am blessed to have one of the best Executive Director positions on the West Coast.  I have great new team and live in a wonderful place with loving family.  The two situations are just very different and both very real.

Dementia has changed my life.  Politics have changed the professional side of my life.  There is a reason for it all.  I know God has a plan.

As my day unfolded very differently than originally planned, I was shaken from my melancholy by a wonderful opportunity to join an executive meeting with the owner of our company and some other upper level, high thinking executives.  I had to be "on" and I've learned enough over the years to compartmentalize those emotions and perform.

During the meeting and later in the day, I was missing being able to pick up the phone and share my day with Gary.  He just can't understand an in-depth conversation anymore, much less empathize with any complex situation.  I miss him so much.  He is my partner.  Or he was.....the man that is here is very sweet and I am blessed that he is happy.  High maintenance, but happy. 

Melancholy is real but I refuse to let it interfere with my performance. 

Saturday, September 19, 2015

Verbalizing Signs while on the road....

Driving with Gary in the car can be very interesting.  I listen to Joel Osteen radio a lot when on the move.  It is motivating and inspirational to me. He's also a great source of funny, clean jokes.

While riding, I often hear from Gary "Cornish and Carey. "
"Parking Garage enter here.
Santa Ana Canyon Road.
Vons. Subway. AM/PM. Carne Asada.
Chicken and Waffles."

He is reading various signs aloud and the driver has no attachment to the sign and may not have seen it.  "Gary, what are you referencing?  Are you reading a sign?"


"Then what are you talking about?"

"The sign back there." 

He also starts conversations in the middle of a thought.  It can be very aggravating. "Honey, why aren't you answering me?"

"You didn't say anything."
"Yes, I did.  Fried chicken." 
"Is that what you want for dinner?"
"I will have to get some at the store."
"Chicken, fried chicken."
"Why are you going to buy Fried Chicken?  That does sound good."

Going to the grocery store can be a similar experience.  Today, we were in line at the check out counter in the store.  While, a nice young man with a name tag "Aaron" was bagging, Gary read his name aloud.  Aaron said, "Yes sir?"  Gary said his name again in a matter of fact way.  Aaron said, "Can I help you sir?" 

"Aaron.  That is your name."

I explained that Gary has dementia and that he often reads things aloud and I am sorry that he was confusing.  Aaron slightly smiled and looked at Gary with complete confusion.  Most people don't realize he has a cognitive disorder because he doesn't fit whatever stereotype they have conjured in their mind of a person with dementia. I guess drool is expected.  Gary said "Aaron, your name is Aaron" two more times.  It was as if Gary was providing proof to Aaron that I was telling the truth.

Aaron snapped out of his weird expression and said, "Have a very nice day."

Another day in the life of Dementia and trying to be normal.  NOT!

Saturday, September 12, 2015

The Law of Attraction at work.....it works even when you don't want it to work!

It was starting to be a long week at work and on Tuesday night we went to bed early, around 9:00 to get some sleep.  We found a great nutritional that helps one get a deeper sleep.  It contains Valerian, Melatonin, etc.

About 10:30, our beagle Diva, decided she needed to go out so I arose, went down the stairs to the first floor, down the stairs to the dining room and hooked her leash and to pee we went.  After going back to bed, Gary started talking.  When Gary talks to me in the middle of our sleep, it sounds more like jabbering.  Nonsense.  I desperately tried to get him to quiet.  "Honey, I need to go to work and you need to go to daycare tomorrow...lets get some sleep."  "But, I'm not sleepy.  Are you sure Diva does not want to go out? Do you want me to let her out?" 

"No, Gary, you cannot just let her out in this house.  You need to put her on the leash and take her out.  I just took her." 

"Why don't you just let her out?"

"Our yard does not have a fence and there are coyotes in the neighborhood, so we have to take her when she goes.  But, I just did so go to sleep."

A few minutes later he started again.  "What time do we get up to get ready?  Should I take a shower now?  Where is the mouthwash?  Did you let Diva out yet?"

Finally, he quieted only to start about an hour later.  Same ritual.  Only, my agitation was growing and of course, Diva feels it, dislikes it and barks to go out (or to get away from us).  I arose, took her through the same process and brought her back to the bedroom. 

"Ada Mae?  Why don't you just prop open the door so you do not need to go with her?"  I again explained why.

"Were you going to take me to the CLUB tomorrow or do I stay with Heather? I really like the CLUB."

"I'm glad you like the CLUB but right now, we need to go to sleep and you just need to be quiet."

"Okay, I promise I will be quiet."

A few minutes later....."Ada Mae?  Don't YOU need to go to the bathroom?"  Well, I really didn't but he had angered me so that I thought I might as well get up so that my bladder would be empty in the event that he became exhausted and decided to quiet down for a long summer's nap.  As I got up and rounded the end of our bed, I swear the carpet covered plywood stairs at the end of our bed (for Diva to climb into our bed) moved six inches and blocked my foot.  HARD.  I hear a crunch and knew instantly that something was broken.  The pain started.  I needed ice but knew that Gary could never follow instructions to get to the kitchen, open the freezer not the refrigerator and find the ice pack.  

So, down the flight of steps I hobbled.  I retrieved the ice pack and went back up the stairs in a painful, pitiful way.  I was really angry now but instantly knew that this was my fault.

I have spent the last few weeks feeling sorry for myself about Gary having dementia.  About not going on a 30th anniversary trip.  About lots of things.  I believe that the Law of Attraction works in conjunction with God to bring us what we attract.  I was attracting negative.  I needed to get positive IN A HURRY.

After returning to bed and explaining to Gary what I had done at least 4 times, I iced my foot and fell asleep.

The following morning took me to the emergency room and sure enough, the fourth toe on my left foot was broken.  I will spend the next two to four weeks with tape and gauze on my foot.   

When the doctor told me that I could have no physical activity for two weeks, I looked at him in shock and confirmed that I would not be able to play soccer.  He validated that I need to not  play soccer.  Its a good thing, I really didn't want to learn anyway.

So, I hobbled to work and home.  We were able to go to bed early and I begged Gary to be quiet all night so I could recover. 

Around 1:30 in the morning, he was standing at the end of the bed tapping me on the leg.  I was in a near coma-peaceful-place.  "Do you need to pee?"  The truth was, I think, is that he needed to pee and couldn't find the bathroom.   I got up, went to the bathroom and as I was exiting (or trying to) the "poop chamber", he was standing there waiting to go to the potty himself, penis in hand and waiting.  I asked him nicely to move aside so he could get to the toilet.  He just stood there.  I couldn't move and he couldn't get to the toilet.  I asked again for him to move, nicely.  Then, with no movement, I pushed him slightly out of the way, aware that I need to protect the broken, taped toe while walking past him.  Due to being off kilter, I tripped and hit my good foot on the step stool next to the bathroom.  Dang it....it sounded a lot like the night before when I had broken my toe.

"No, this is not happening....."  So, I went down and got ice again, let the dog out and decided to just lay there and experience the pain.

I have decided not to baby the second injury and after two days, the toes will at least touch the floor.  I am not going back to emergency unless it gets worse.

At work yesterday, as I walked down the hallway favoring both feet, I'm sure I looked like a wobbly two year old with a full, dirty diaper. 

Dementia has certainly brought lots of changes to our lives. I need to keep laughing and praying.  Laughs and prayers from our friends are certainly appreciated.  

Sunday, September 6, 2015

Going swimming is off the activity list....

I'm angry.  But, I pretty much stay that way these days.  Its a long weekend as I have Monday off work.  So, I worked like a dog on Saturday to clean the house, unpack dozens of boxes in the garage and collapse after dinner.  I decided that today, Sunday, we would go to church, have lunch (yes, I ate food rather than Medifast food), take a nap, go swimming and have a nice quiet evening at home.

Church went fine.  We visited a church of the Nazarene in Yorba Linda and were welcomed like family.  Gary only spoke out of turn loudly once and that was to proclaim his love of the Lord so it was okay.  (He has been known to add comments to the Pastor's sermon).  We stopped and bought lunch.  After eating I suggested we take a nap and then go swimming.  Gary said that sounded like fun and I started looking forward to swimming around in warm water on a 90 degree day.

After napping, we arrived at the pool to find a young family and another couple deeply engrossed in conversation while playing in the pool.  I went in first and told Gary that it was chilly but ok after moving around.  I swam around about one minute and looked up to see him standing in the edge of the pool on the steps and asking the VERY pregnant woman next to him if there was one more step.  She said yes and he got in.  He quickly and loudly started complaining about how cold it was.  I got him to move around and submerge his body to get accustomed to the cold.  He followed me around the wall of the pool but acted as if he could not swim.  This man was a FISH in every water situation ever encountered.  I was shocked.  He complained loudly and profusely until I agreed, five minutes later to leave. 

He exited the pool at a fast pace and headed straight toward the gate.  I yelled, "Stop! Gary!" but he does not understand that word anymore.  I quickly walked around the pool to get our towels and belongings while he stood on the side of the pool in 90 degree weather, in the sun and shivered like a small child.  We bundled him and got back in the car and drove home.  Total time gone from home:  15 minutes.  I couldn't believe that one more thing has been omitted from our lives.  Something we so enjoyed before is not an activity I remotely try with him again.

I am angry.  I am 52 years old and finding more and more things that I am unable to enjoy.  No social life.  Our 30th anniversary is in three days.  No vacation.  Why even go out for dinner.  Why? 

So, I realized that I am sitting here feeling sorry for myself while Gary lies in the bed watching "I Love Lucy."  His life has been impacted just as much as mine but the difference is....he really doesn't know it or care.  That is the blessing in Dementia if there is one.  Some days he gets very frustrated but most of the time he just floats along and takes what he gets. 

I'm not sure what life will hold for me.  Happy Anniversary, Gary.

Thursday, September 3, 2015

Moving to a new home and job.....

Its been several months and thousands of smiles, tears, miles, boxes, tape, goodbyes to dear friends, heartache and celebration since I wrote my last blog.

Its the beginning of September.  Gary, Heather, Xander, Diva Gerl and I all now live in Anaheim, California.  We moved here a month ago and I just finished my fifth week as Executive Director at a local university.  God was very good to us and helped us during every detail of the job search, the offer, the actual job, the home search, the yard sale, the packing, the move and most of all in the unpacking and settling.  His power and control is amazing to me.

One example of how God worked for us is related to our yard sale. Before we knew where we were moving to, we knew we had to eliminate various items from our home inventory due to clutter, aging and downsizing. We planned the yard sale for one particular Saturday and staged all sale items in the garage.  Normally, our gardners came on Saturday.  I forgot about this fact and it would have been disasterous had they shown.  On Friday morning, while at an appointment, Heather called me to ask if I had changed the gardener's schedule as the team was there a day early mowing.  God planned that well, didn't he. 

After an extensive job search which took me to Baltimore and Phoenix and many telephone destinations, I was offered an incredible position (dream job) in California.  We had considered and interviewed for positions in Baton Rouge, 4 in Houston, Louisville, and Portland.  All other jobs would have resulted in pay cuts and many other negatives.  I was thrilled to land the current position.

Meanwhile, Gary has been going in and out of confusion.  Traveling to Disneyland for a brief vacation during a job interview resulted in many mishaps and my realization that traveling with him anymore without significant support is nearly impossible.  During my exhaustion and sleep while on vacation, three nights he escaped the room and ended up in the hallway while looking for the Kitchen or the bathroom. After a security guard brought him back to our hotel room at 3:00am. (Thankfully, I told the front desk at check-in that if they found him wandering by accident to notify me. )   So, now the doors in hotels have guardian angel chimes on the door so I will awaken if he tries to leave the room.  (This worked well during our move when we stayed in a hotel for three nights).

During the same trip, I finally determined that he walks at a snails pace and cannot do things like Disneyland.  He didn't really care about the activities and I spent most of the day literally dragging him from one place to the next.  For some it is the happiest place on earth.  At that time, for me, it was very uncomfortable and frankly, I could not wait to leave.  Ironically, my new office in Anaheim has a commanding view of the Matterhorn, Mickey's Ferris Wheel and the Tower of Terror at the Disney parks.  I have chosen to look at these each day as a rememberance of what Gary's and my vacations used to be....fun and full of adventure.  Those are things we will not do together again.  The view is bittersweet.

Moving Gary to a new multi-level home has resulted in trauma related to him not being able to find one of multiple bathrooms; disorientation regarding finding our living room which houses his favorite chair and several bathroom accidents.  He is now settled into going to a local senior day care three times per week.  I can see the roof of his day care from my main college building.  They bring him home in the late afternoon where he takes naps and waits on me to get home.  This is a time for Heather that can be filled with hundreds of questions, incessant talking and boredom for Gary. 

Our little dog Diva Gerl has experienced kennel cough (no walks nor exposure to other dogs) which she contracted from kenneling during our move.  Then, a cyst on her side became infected and had to be removed.  With 10 staples in her side and having to wear a collar for 14 days, the poor thing has not enjoyed our new home at all.  No walks, no exercise and isolation for her.  Gary has not understood the need to leave on her collar for safety and so she did not chew the incision.  So, everyday, multiple times per day, he is scolded for removing her collar.  Tomorrow, the collar is removed and perhaps we can begin walking again. Though slow, he will enjoy that freedom out of the house (Never alone of course).

I sincerely hope that God's plan for us is as grand as I imagine it will be.  He is certainly grooming me for something big!  I have the professional challenge of my career with 200+ employees and almost 1600 students.  My days are full.  I go straight home to be with the family and to relieve Heather.  I still make time for getting hair and nails done but have very little time to myself.  I am adjusting and enjoying what time I do have with Gary.

The highlight of my day is watch him and the other seniors when we walk him into the day care.  They all light up and say "Good morning!"  He quickly signs in and forgets I am there as he goes about breakfast and I leave for work.  I am glad he has found a place he likes and wants to go everyday.

God is looking out for us.