"What do you mean your brother died? Why is that?"

The minute I heard that my brother had died unexpectedly, my first thought was that I knew I had to go from our home in California to Texas for the funeral.  Second thought, do I take Gary or not?  The third thought was “Call Heather”.  I instantly knew that if Heather could come for a few days and stay with Gary that my trip would be smoother, more healing, less stressful and much easier on him. 

I called Heather and explained what had happened.  Her daughter is getting married in a few weeks and I hoped the timing was exceptional so that she would miss nothing related to the events but that she could assist.  Without hesitation, she said that she would come. 

I had been at the office when I got the news and after a few necessary phone calls, I called Gary.  Pre-dementia, he would have been my first call.  He would have soothed my soul, started making travel arrangements for us both, arranged for the dog to be boarded and done whatever necessary to get us ready for a trip surrounding so much tragedy.  NOT this time.  I knew, for the most part, I was on my own.

My call to Gary was very simple, unemotional (that accomplishes nothing but frustration for him) and fact based.  “Gary, I just received some bad news.  My brother, Mike died this afternoon.  We don’t know why but his wife found him lying beside his exercise bike dead.  I will have to go to Texas.  At this point, I’m not sure when, but Heather will come stay with you and I will go by myself.”  His response was a heart-felt “Oh, my!” followed by some basic questions.  Gone is the heart and brain that before the dementia would have wanted to comfort and protect me.  Somehow, faintly, I knew how my sister in law was going to feel in the coming days, weeks and years.  The husband is just not there anymore.

I swallowed my selfishness and was thankful that Gary was alive and remembers me.  Upon getting home that evening, I asked if he remembered our call that afternoon and what I had shared.  He did not.  “What do you mean your brother died?  Why is that?”  Throughout the evening, I tempered my emotion and repeatedly reminded him of my grief and angst over the coming trip.  I lost count of how many times he asked why I was so upset.  I bordered on helplessness and infuriation.  I did not really cry until I spoke with my niece, and ultimately, my brother’s widow.  I held together until I hung up the phone.  Then, despite Gary,  I sobbed.  That was really the only time during the whole experience that real tears flowed.  The rest of the trip, I was pretty numb.

In a couple of days, Heather came and I left for Texas.  It was hard preparing, running errands, packing and shopping with Gary constantly needing reminders of the “why”.  I got through it.

During the days following, I visited with family, extended family, friends and yes, the funeral home to see my brother.  Heart-wrenching.  I shared a room with my Dad and we were apart very little.  He is really an angel sent to earth.  He loved me, listened and provided his quiet, ever-present unconditional love.  I knew there was no comfort that I could provide for him.  Death hurts those left behind.  Period.

Each day started with over-the-night voicemails from Gary leaving messages asking about where I was, when I was coming home and various other things that really let me know that he had not retained the information of the death.  Many calls during the day were received. Every night consisted of calls telling him the same information.  Finally, I grew numb over him.  I lost my temper a few times. I even lost my temper with Heather when she reached out for me to call Gary as he was misbehaving.  It was right in the middle of our family dinner after leaving the funeral.  I was thankful that I don’t type well in text.  I was angry and curt.  I will need to apologize to her.  After all, she is human, too!

During my absence, Heather was a champ. Despite having fallen in the bathroom, hitting her head and having a severe headache for three days, she took great care of Gary.  Her patience is wonderful.  She views the task as taking care of two three year olds….only one of them is 66.  Gary is the same age as my brother who just had the experience of his heart stopping.  No heart attack….just stopped due to heart disease.

So, I am writing this as I fly home to my husband.  Someone asked me (dear Sharon) who takes care of me.  I responded that I take care of me.  In retrospect, that is a wrong statement.  I have so many around me that love me and assist with my well-being.  Thank you all. 

Gary will surely wonder where I’ve been.  It is yet unknown how I will respond.  Will I just hug him and say nothing?  Will I start with the customary “I Love YOU!” or what? 

Here is my task list next week: 

• Have a trust attorney review our wills, advanced directives and form our trust. (Ironically, I asked for a referral a few days before my brother died.
• Make cremation arrangements and pay for them for both Gary and myself.
• Make an appointment for a much-needed check up.
• Start the diet that I interrupted when I left for Texas.
• Make an appointment with Gary’s new doctor for an exam.
• Calendar a reminder to call my sister in law

Dementia is no fun, but it is better than what I just experienced in Texas.  Even though Gary is not fully the man I married, I still love him with all my heart and will be there until the end.

The Christmas Present that just keeps on giving me stress!

When Gary was a teenager, he was a very accomplished drummer.  He was in a band for several years until he broke his wrist in a fall and somehow drifted away from the hobby. 

He is now 66.  When we lived in the Bay Area, he celebrated many birthdays but on one of his birthdays (in his late 40s), I rented a rehearsal studio for him, complete with a drum set and he played for almost 4 hours.  I never forgot how happy he was during that time.  So, when he announced that he wanted a drum set for Christmas, my heart gave in to the whim. 

The week before Christmas, I started shopping online and found many drum sets for purchase.  I picked out 4 and showed him.  While looking at them, I noticed an ad on the side page for an electronic set.  I pointed out the option and after much studying, he decided that was his choice. The electronic set was ordered to be delivered on Christmas Eve. During all this I realized that the drum set did not include a throne or stool to sit on. I ordered it separately for delivery after Christmas.  I should have known this purchase was too easy.

The LARGE box arrived on Christmas Eve as ordered.  I am always amazed at how Santa fits all those items in such a tiny sleigh....  I was more amazed when we opened the box on Christmas Day that the entire set was packed carefully in 10 boxes and puzzled into one large box.  I did not pay a lot of attention to how the boxes came out of the large box as my Dad and Gary unpacked most of them.  Now, for the directions. 

Gary is pretty much a pain in the butt when it comes to assembling anything.  His mechanical skills which were formerly well-honed have all but disappeared.  Dad and I took over and after about 4 hours, assembled the stands, drums and various pieces.  (I am omitting the yelling, frustration, curse words, perspiration and crying from the story.  All from me, of course.  My Dad was an angel in this situation.) 

Gary sat down the play the drums.  There was no sound.  Dang it!  After more research, we determined around 9:00 that night that it needed either headphones (for private playing) or speakers.  NOT INCLUDED.  I explained this to Gary and we decided to visit Best Buy the following day to purchase both. 

After returning from Best Buy the following afternoon, it was determined that both the speakers and the headphones worked but not to Gary's liking.  "Why didn't you just get me a regular set of drums liked I asked?  Send them back." 



The words were deafening.  Really?  After all that assembly, upset and unrest and you want to return them?  Well, after all, it was a $400 dollar purchase and if he is not going to use them, well, I will send them back to the store.

My father and I started to disassemble the electronic drums.  Much to our chagrin, we realized that all those components had to go back into the exact box from whence they came and the box needed to be placed carefully back into the Large BOX in the exact same position.  How disheartening that was!

Hours later.......I am ready to leave my husband and go to the mountains to be a hermit.  Had my father not been there helping and calming me, I may have really left.

At one point, I was so stressed over getting all boxes back into the box that he looked at me and said, "Why don't you walk away and let me do this?"  How magical that moment was for me.

I walked away for a while and heard Gary say, "Why are you packing up my drums?"  He had forgotten why the drums were not suitable for him.

Dad and I sealed the box he had finished and put it by the front door for its pick up by the same poor fed-ex guy who delivered it the first time.  It sat for three days, in the way, awaiting its pick up.  What a sore issue it was. Finally, one evening around 7, the door bell rang and the carrier took away the drums.  He also delivered another box....the separately ordered drum throne!  I put it aside and thought nothing more of it.   I'll return it another time.  I was at my limit.

Call me crazy, but I felt guilty that I returned Gary's Christmas present and not replaced it.  Several times, he asked when his new drums would arrive.  So, I looked on the Internet the day following the return of the electronic set.  I went to Amazon and found 10 sets of equal price to the first set and showed them to Gary.  His response was that the drums I was searching were not good enough and that the cymbals needed to be made by Zildjian.  That added several hundred dollars to the purchase.  NO WAY>  I got over my guilt rapidly and told him we would have to keep shopping. 

It was not the money.  It was the point. 

So, Mr. Gary, you will need to wait.  Sure.....another week.  I went back to the Internet, found the "perfect" drums and ordered them.  They arrived and on this past Saturday, I put them together.  I know nothing about drums.  I know nothing of high hats, toms, etc.  Of course, the set did not include directions. 

Luckily, I found videos on the Internet that showed how to set up a similar set.  Of course,the variations were not explained and I had to look at still pictures, zoom in and blow up the picture to see intricacies of the pieces.  For example:

How does one get the piece attached that holds the drum onto the cymbal pole thingy and make it NOT dump over from the weight of the drum?  

YouTUBE does not have a question and answer forum.  So, I used the best source of knowledge I had in the house.....Gary.  I convinced him that this project was not overwhelming and that if he used logic he could help me.  Of course, he knew. Change the center of gravity and mount the darn thing lower!  When asked how to make the high hat pedal work, he instantly rearranged the pieces and it worked like he had done it everyday.

The drums are assembled.  The boxes have been destroyed.  Guess what?  I even kept the drum throne ordered for the first set so he can sit at the drums and play as much as he wants.  He did just that yesterday.  He just needs to practice again and again.  The drummer boy is still in there.  He was smiling.

After about an hour of playing by himself, he came into the office and said, "There is just one more problem. "  When asked what now, he responded, "My leg hurts from pounding the pedal against the big drum."

After more questioning, we determined that his muscles were sore and there was nothing "WRONG" with the drums.  Sorry dear, you will just have to keep practicing and build up those muscles.  Amazon can't fix that!

Glad that adventure is DONE! 

 

 

"That's DISGUSTING!"

I have an ongoing issue with the behavior that results from my husband's dementia.  I have little patience anymore and it is easily tested by me trying to control situations, prevent situations and to accept them when they still happen.

A few months back, I got a new Galaxy 5 telephone, so since my old Galaxy 3 was paid in full, I decided to give that phone to Gary.  Somewhere along the way, he lost it. (you can check the archives of this blog if you really need to know when....) I used the insurance clause and spent the $100 deductible to have it replaced.  Of course, when the first one was lost, so was the heavy duty "Otter" box and belt clip which housed it.  So, shortly after replacing the phone, I realized that he still needed a belt clip as that was the only hope of him not losing it.  I tried to save money by going to an accessory store and bought a middle of the  road quality phone case and belt clip.  (Lesson #1 of this adventure:  don't try to save money by buying lesser quality goods.)

There have been several times since that trip to the cheapo store that the phone either flipped off his belt or just fell out of the case.  Each time, he got very frustrated and had difficulty putting it back together.  Last Sunday, on the way to see the IMAX version of "The Wizard of OZ", we stopped by the Old SPaghetti Factory to have lunch.  The tile floored echoed as Gary sat down, the phone flipped off his waist, fell into four pieces, hit the floor and slid under two different couples' seats.  THe waiter was very sweet to displace the two couples, move the table, move the bench seats and crawl under to retrieve the phone, cover, face plate and phone.  Nothing was broken except for the embarrased souls called Gary and Ada.  (see last blog entry for the OZ story)

The next day, after getting home from the CLUB, Gary attempted to call me several times and was complaining about the phone case again.....enough!  I picked him up after work and headed to the SPRINT store to buy an indestructible OTTER BOX.  On the way, I noticed that he was twirling a Grape Tootsie Pop around in his mouth.  Not only did it smell very tasty but he was clanging it against his teeth.  I asked him to stop and he said "I'm almost finished, relax." 

I thought no more of it at the time....Upon entering the store, I was laser focused on finding the phone cases while the store employees focused on the current customers.  Gary went straight for the counter and interuppted the customer and worker to ask "Where is your trash can?"  I was hearing this but thought nothing of it nor did I hear the rest of the conversation.  Suddenly, I hear a shreiking and a "That is disgusting!  That was in your mouth!"

Apparently, the clerk had answered the question and continued to say the only trash was in the back of the store in a large bin.   Of course, Gary had finished the sucker, needed it to be tossed and had no qualms of asking the clerk to throw away his stick.  OMG. 

I walked over, grabbed him by the arm and explained that my husband has dementia and does not realize that his request is inappropriate.  She instantly got it and became a nice sales person rather than the screaming "Valley Girl" that was disgusted moments before my explanation.

As she installed the Otter Box, I explained to Gary why his request was strange and not acceptable.  I told him that the ladies at the CLUB and I often do things for him like toss out tissues, throw away objects that the general public just won't do.  He seemed to understand.

Its been over a week and the phone has not left its case nor flipped off his belt.  I should have bought the better product FIRST.  It would have saved the poor phone person the close encounter with Gary's saliva!

Recap of the Holiday Break.....whirlwind of activity!

Its been a while since I wrote.  My Dad was here for a few weeks.  Heather was here with the kids off and on and I had from 12-19 through 1-5 off work.


There was not a lot of time to write during those days despite the fact that fodder for content was plentiful.  So, in retrospect, here are the highlights:

• For the most part, during the entire time off, Gary had only one (count it), one episode of overwhelm.  Why?  Not sure other than I tried desperately to stay calm, answer his questions, fulfill his needs and have fun. 
• The first week back to work after the break was full of overwhelm.....go figure.
• We went to the zoo on the coldest day of the year.  After two hours of freezing, 5 of us (including a large car seat) crammed back into my SUV and came back home.
• Dad had to go to the emergency room for a bladder infection and stayed an extra three days.
• We had a horribly, ugly experience with Gary's new drum set on Christmas Day and following day. (if this were a drama show, that would have been an episode worthy of Oscar.) My Dad was a real trooper and helped me through the whole experience.  Had he not been here, I may have walked out of the house to not return for days!
• We had several great meals.  Gary helped with the major meals and was a big help if I asked him.
• I had one day where I REALLY needed a half hour to myself so I decided to go the store.  Quickly, I found the car full of my Dad, Gary and for the first time, my Grandson Xander asked to go the store with Grandma.  It all went pretty well.  I am still waiting on that half hour.
• Today, Gary and I went to see "The Wizard of OZ' at the IMAX theatre with some of my employees.  He sang many of the songs during the movie.  At the end, he clapped and talked about what a great movie it was.  When I pointed out parts of the movie I had not noticed on television, he replied with, "You've seen that movie before? "  I was surprised that he did not remember countless times we had seen it together.  I wonder how he thought he knew the words to the songs?

I will try to keep writing more frequently and regularly.  2015 should be very interesting.....

How we lost two (count them) Sets of car keys in one night......

Heather and her family were to be in town on Thursday....that went well. 
Dad was supposed to get here from Virginia on Friday night at 9:05 p.m. I had it all planned out.  Pastor Jerry and Vonna were having a Christmas get-together at their home in Elk Grove (south about 12 miles) from 7 - 9.  The plan was that Heather and the kids would take one car and Gary and I would drive seperately and then I would leave early and head for the airport (about 25 miles from there - North).  Saturday was to include a special breakfast, tree trimming and Christmas Dinner with my Dad. That is not exactly what happened.

First off, my Dad called to say he had missed his second plane due to engine issues and was spending the night in Washington D.C. So, no special dinner with my Dad and the kids had to leave on Sunday after church....ok, adjust.

So, we still had to take two cars to the lovely party.  It was pouring rain but we got there and back safely.  We came into the house and I drove NOWHERE until it was time to leave to go to the airport. 

Saturday morning, somehow, I misjudged the fixins for the gravy. With my Dad missing, somehow I thought I had enough sausage for the gravy. Wrong. Note to self, do not use left over taco meat to replace missing sausage.

We decorated the tree and it turned out beautifully.  I fixed Christmas dinner and all seemed happy.

It was time to go pick up Dad.I could not find my car keys which I always keep in the same purse pocket.  I had about ten minutes before I needed to leave.  Since we moved, I have been carrying important documents, keys, etc in my purse so nothing would get lost.  I'll just use my extra key and find the main set which includes my house key and only mailbox key.  The spare was not in my purse.

Heather said not to worry but to take her car.  I responded that was a good idea but I still needed to find the keys. I could not blame Gary because I was the one with the keys.  Oh my gosh, am I losing it now, too?

We started retracing my steps and after a few minutes I got really upset and decided to leave.  After dumping out my purse, twice....I was pretty freaky.  I am used to Gary losing things but two sets of keys?

I took the Prius and headed for the airport.  They continued to look as I calmed down to drive and think.  I remembered that the night before when we got home, I had handed the keys to Gary to open the house while I waited for the kids to come in through the garage.  Yep, he was involved after all.  I told them to look around all Gary's belongings like his jacket, pockets, etc.

Dad arrived safely and we headed toward home.  I rethought the night before and decided that the one set of keys had to be in the house.....i just needed to think.

When i arrived home, Heather asked if I had a hole in my purse.  We tore it apart and BINGO, there was the back up key.  So, now to find the main key.

I remembered all the clothes that Gary was wearing. He had one his black jacket, black jeans, black wallet, etc.  I went into the bedroom despite the fact the kids had searched there.  I went straight to the bench at the end of our bed to look for his black shoes.  Perched precariously in his shoe was my key ring, keys and were covered by a pair of sweat pants.  An easy miss.

Wow, what a relief.  I had already figured out how to rent a car on Sunday, go to the Benz dealership on Monday and apply for a replacement mail box key.  What a fiasco.

Right now, I am trying to write this blog.  I have been writing for quite some time now.  Dad is sitting on one side of me on the sofa and Gary is on the other.  Not exactly pristine writing conditions.  Sorry for the abrupt end but I just can't finish my thoughts.

Confusion: Wife versus daughter

Gary and I had plans to attend the Rancho Cordova Christmas Tree Lighting event on Sunday evening.  Since we are so close, we decided to walk.  So, since it was chilly outside, we bundled up.  I made sure Gary had his phone and I carried mine....just in case. 


Right before we left Gary asked if he should call Ada and tell her to meet us at the park.   I told him that I am Ada.  He looked at me with a rather funny, inquisitive look and said, "I know you are Ada but I'm talking about my wife, Ada Mae."  I knew I was fighting a losing battle but attempted to explain who I was, repeating that we have been married 29 years and that we have never been separated.  I thought we were experiencing the confusion from last week when he thought I was his new wife.  No, he thought I am his daughter, Heather but named Ada for now....


As we walked the .7 mile to the park, Gary pulled out his cell phone and called my cell phone, so I answered.  He got angry that I was answering Ada's cell phone.  After multiple attempts to reach "her", I decided to let the phone go to voicemail.  He left her an extensive message telling her that we would meet her at the Christmas Tree lighting and that once we got there, he would call her back and tell her where to meet us.


At this point, I just accepted his confusion and tried not to feel anything.  During the mini-concert and throughout the event, he could not understand why Ada was not calling him.  I repeatedly explained that I was indeed Ada and I was not going to call him back since I was sitting next to him.  He wasn't getting it.


The tree was lit and the snow and whole event was wonderful.  We proceeded to walk home.  It was very cold and then I realized that he had left his gloves somewhere....another loss.  And those were his good gloves.  (Note to self:  don't buy anything expensive for him...its a waste of money)


We got home and fixed dinner.  The confusion went on for over an hour and he kept calling me Ada but thinking I was Heather (only named Ada).  I got fed up and went into the office to work on the computer.  He called on the cell and I answered.  He asked where I had been and why I had not come to the tree lighting.  (he was in the other room and could not see me).  I explained that I was in our office and he needed to come in and see me.  He did, saw me on the phone and realized who I was.  He went back into the den and announced that his daughter had left. 


I again tried to explain and ended up calling Heather.  She told him that she had been home all day and had not been here.  He sort of got it but spent the rest of the evening telling me about the tree lighting and what a good time they had.


The next morning, he was fine.  I told him that it hurt my feelings but that I understand that he cannot help it.  He hugged me, apologized and we took him to the CLUB.  He had a great day.






































Santa visited the CLUB and Gary told him that he wanted a 40ft sailboat for Christmas.  As a good friend said, "After all, a 60 footer is just too much to handle."


Maybe I'm a little slow, but I am starting to realize that spending time trying to convince him of reality or trying to get him to act differently or have things make sense is just frustrating both of us.  I just need to let go and relax.  Yes, that is what I will practice....yes, that is a good solution for now.


Guess I better start shopping for the yacht.

Would you hand me the phone so I can call my wife?

Its been weeks since I've written a blog...mostly due to moving activities like packing, changing addresses (forwarding etc), notifying two sets of utilities, scheduling installs (cable, sound system, etc.), managing movers, unpacking and staying sane during it all.


Our friend Michael picked up Gary on Sunday afternoon before the move on Tuesday and brought him home Wednesday afternoon. Thank God for old friends.  Well, they may never do it again, but they saved us this time.  Apparently Gary: ate like a pig; got very little sleep; asked them every two hours at night "Where is Ada?"; and tagged along wherever Mike needed to go.  Gary required they repack his suitcase several times so Mike could take him to the airport.  Keep in mind, it is a 2 hour drive and there was no airplane involved in any of the trip. 


On the way home, Gary called me from his cell phone several times.  Of  course, he left it in Mike's car and we did not realize it until the next day.  I found Mike's glasses among our belonging scattered on our bar.  So, I sent him an email asking if I could trade his glasses for Gary's cell phone, bathrobe and whatever else he left behind.  We had a good laugh.


Moving without Gary went smoothly as I only had to answer questions of the movers.  Getting all the crap we own into place on this end is another whole story.  When the movers had many of our belonging staged in the driveway to go into the truck, we all took a break.  I sat there and felt so guilty.  After being in Haiti in 2010 and many other places in the world where people have nothing or little to nothing, I realized how blessed and absolutely uncalled for it is for us to have so much.  It is pure out American greed and I need to dispose of things. 


I have lost my temper several times this last week but am holding my own.  Gary is trying SO HARD to help. 


We have had a few mishaps but the greatest story started on Friday night when he became confused about our older phone numbers, old phone numbers and new phone numbers.  He swore that he need to call his wife at 686-8458 which is the number we had for six years but changed about a year ago.  Then he decided to call her at 686-0304 until she answered.  This whole time I tried to convince him that I was his wife of 29 years and that I was right beside him.  He said that he had been married to someone else for 17 years and that he and I had recently reunited.  One minute he knew me as Ada and the next, he didn't.  I got very angry, then hurt and then sort of accepting.  He was combative so I called Mike to have him tell Gary who I was and then when he failed, I tried Heather.  He pacified them by agreeing but started again the next morning. He did this off and on all day.  Pastor told Gary on Sunday who I am and my relationship with him. Since he knew that Jerry would not lie to him...all is well.


He has spent the last two days watching the events in Ferguson Missouri on the television, helping me and sitting in the massage chair.  I give on any long term help with the house.  He is good for about 20 minutes and he is off chasing a shiny object. 


I am blessed to have a husband who does love me.  I fixed a great dinner tonight and looked at me with love and said thank you.  He kissed me and said that I'm his best wife ever. 

Never found the phone.....

The last few weeks have been days of intense expressions of love, anger, confusion and move preparation. Only 9 more days separate today and moving to our new location.  I'm very excited and Gary is also....at least when he remembers that we are moving.  Its very hard to grasp that he can sit in our houses with boxes EVERYWHERE and not remember that we are moving....but he does.
I haven't written in a while, but I would like to revisit the days following Halloween. As you know, Gary lost his wallet, house keys and Galaxy 3 phone.  I stopped the phone service and cancelled credit cards the following day and waited until Monday when the CLUB opened again.  Upon arrival at the CLUB on Monday, I was greeted by the Director and spoke with several of the volunteers.  NO WALLET.  NO PHONE...ugh.

One of the staffers indicated that Gary was having difficulty with his belongings and his costume, so they had put his wallet and keys into a brown bag that also contained his candy and Halloween treats.  My first thoughts were not pleasant.  How could they expect him to keep up with a brown paper bag with which he is not familiar?  I just couldn't believe what I had to go through as a result.

(Later, I realized they only meant well....I really should lighten up.)

Anyway, there was no paper bag to be found at the house.  I tore the whole house apart......I gave up.  The next day, when I came home, his wallet was lying on the counter next to his keys and Halloween candy.  No paper bag. No recollection of the "loss" or the find.  I was elated and frustrated.  The telephone was never found.  The deductible on the insurance was $150.  New phone arrived and is set up.  I made the choice for him to continue to have a phone.....just in case.

Over the weekend, we continued packing the "last minute" stuff.  I was downstairs putting clothes in the washer and heard what sounded like pounding coming from upstairs.  I went up the steps to find Gary on the floor next to his computer, frantically unplugging all the peripherals attached to it.  I yelled, "what are you doing?"

He responded that the computer was making a very loud clacking noise and it scared him to so he unplugged it.  I was furious. It was just one more thing that he had done that day that put me over the edge.  I screamed, yelled, cried and threw a magic marker at him.  He was not hurt but was upset because he didn't know what he had done wrong.  I had planned on shutting down the computer next week, properly labeling all peripherals and packing the computer then.....nothing was going my way.

I thought my chest was going to explode.  I told him to take the dog for a walk and leave me alone so I could calm down.  I cried on the bed...heaved is more like it.  Then, I realized how stupid I was being and prayed for forgiveness.  I prayed to not get angry.  I prayed for ability to bite my tongue and better understand his disability.  (Pastor spoke only to me in church this morning).

I felt an instant peace.  God granted me the peace I was requesting and I had a wonderful, deep nap.  I arose to spend an hour putting the computer back together.  He had unplugged the speakers, printer, and network cable.  I reconnected all but the sound....its only a week and I probably won't need it. 

We had a wonderful evening and a great day at church.  The rest of the day was spent packing, hugging alot and eating mystery food out of the freezer.  The smoothies and coffee pot are ready for morning.....Gary is enjoying his time in the massage chair.  Diva is running around the house chasing a fly.  I am trying to relax a little before bedtime.  I can't wait til this move is over and things are put away in the new house. 

Please pray that Gary will find the move smooth and not get too upset. 

Its NOT a Pirate's Life for ME.....

Today was tough. Gary dressed as a pirate to go to the CLUB for their Halloween party.  We got up late so were running behind all morning.  His costume was last worn in the West Indies during a Pirate Cruise Pub Crawl....


Anyway, after realizing that his pants had no pockets nor belt, we had issues.  Where would he put his wallet (complete with mandatory rubber band accessory), house keys, roll of tissues (just in case he is attacked by ten years worth of boogers), collection of hair combs and his change which is usually counted multiple times and stacked in order of size? I remembered a fanny pack that has been hung on a shelf downstairs for months.....perfect for all his stuff and would not detract from the Pirate outfit.  What good pirate does not carry a fanny pack?  So, I went down to retrieve the familiar site and guess what?  It had been moved.  Dag blast-it!  So, Gary had to put all his belongings in his jacket pocket.   He complained several times before we left the house that the jacket did not have pockets....you can predict where this is going....


As we drove down the street toward the CLUB, he asked if I had visited or inquired at any of the local Assisted Living Facilities.  I asked if he meant for him or for me.  He said that I need to look into them for him. Sobering thought.


I dropped him off at the CLUB and watched the man walk away and in my imagination he morphed into a seven year old pirate on his way to a Halloween party.  The stress of driving to the CLUB with me melted as he reached the door and got a hug from one of the volunteers who was thrilled to see the Pirate. He walked in and did not think to turn and say goodbye. I cry a lot at this point in many days.


Many hours later, I called him to say I was leaving work early and for him to be ready to go to church for the Harvest Party. He reported that he had a stressful afternoon because he "got kicked off the bus."  Many questions later netted the following:  He had lost his wallet, keys and I later discovered, his cell phone.  He remembered enough to know that he discovered this when he boarded the first bus but did not think to go back in and look for it.  I guess he rode for free....


Since the CLUB does not open again until Monday and he did not tell me until 5:00, I left a voicemail for them to see if anyone would check over the weekend.  I know they don't, so I cancelled the only credit card he carries and will wait.  I was livid.  Livid, livid, livid.  It does no good but I feel it anyway.


I told him to put on jeans and a golf shirt and that we would go to the party.  He had on shorts.  I knew I should have told him to change but I was so angry over the events of the day that I let him go anyway. No sooner than we arrived to see kids in costumes, he started complaining about being cold and had one of the church folks turn up the heat.  Twenty seconds later he was trying to further increase the temperature.  I tried to get him involved in one of the activities but he complained bitterly and asked to come home to change.  I explained that if we left, we would not return.  So be it. I was done.


We came home, ate dinner in silence, broke the handle on the screen door and I hit rock bottom emotionally.  I don't know how much I longer I can withstand this level of stress.  The next few weeks of moving and getting acclimated will be critical. 


Thank God his visiting Angel comes tomorrow.  I can get some peaceful hours in at work. 



I changed my profile picture tonight on Facebook to a great picture I took of Gary the last time we were in Panama. Hiking in the rain forest is very special. It portrays him perfectly then...free-spirited and loving life.  Please enjoy it as I do.

Moving Adventures...

"So, do you want a divorce?" says Gary. 
"No, honey, I just want you to be quiet while I take a nap. I don't feel well and you have awakened me at least ten times asking me questions about the move to Rancho Cordova.  I have answered the same questions a million times and you are starting to irritate me!"


Let me paint the picture for all our blog readers.  In an attempt to get Gary mentally ready (and the packing, too), I started talking about the move and packing several months ago.  I thought it might be easier on him to get used to the idea.  In some ways that has worked because he asks questions, has helped me plan in many ways and then there are days like today. Before I tell you the questions, keep in mind that I have covered these topics MANY, MANY times. I have answered every question in many different ways.

• Honey, the box next to the bed says to go to Lowes.com and read about moving. Have you done that?
• Why are we waiting another month?  Can't we go now?
• When are we moving? (this question was only moments after the last one!)
• Is Ted moving out before we move in?
• Have you gotten quotes from movers yet?  Perhaps we should go to Lowes.com and see what they offer?
• Shouldn't we finish packing? (we have packed everything except for what the movers are packing on the last day)
• I'm so overwhelmed.  Can I have a margarita?
• We should really make a list of the things we need and go to the store.  Our pantry is EMPTY! (we have about a month's worth of food to eat before we move).
• Do you want to go car shopping today? (We bought a car last weekend and its being delivered from Oregon)
• We have so much packing left to do!

So, needless to say, life lately has been challenging.  The good news is the Visiting Angel we hired is working out very well.  He doesn't necessarily remember her from one day to the next, but she leaves me notes about what they actually do and what adventures they have at the park and at the store. She is okay with driving to the new house when we move. 


He was talking to me on the phone the other day when she arrived.  I told him to stay on the phone while he went to the door to see if it was Jo.  I heard the following:
"Good morning, Gary!"  "Are you Jo?"  "Yes, I am Jo.  Hi there Diva!"  He said, "Oh, you know Diva, too?"  She replied that she indeed knows her well and they have been on many walks together.  He responded that he didn't know that.


On Saturday, we did not have much to do....just a down day.  He got through the day without any "overwhelm" and did fine until dinner.  We had a marinated steak with mushrooms, sautéed chard and black eyed peas.  He sat down and quickly commented that everything was very good.  About half way through it changed to "this is not very pleasurable."  The leftovers are in the refrigerator.


This morning I awoke to his stressed sounds of "whew!  Hmpfff.  Hmpff.  Whew!"  I layed quietly but really knew that he would not work through it.  I asked what he was thinking about and he only mentioned random thoughts.  He was just overwhelmed.  Period. 


So, I arose and made sure he had all medications and breakfast.  He quietly forgot about his overwhelm and we went to church.  Before we drove just a few miles he had managed to irritate my every nerve with one thing or another.  Thank God I was going to church.  That place always centers me quickly and in a strong way.


Many people have asked how they can pray for us.  Pray for clarity and peace for him and patience for me.  Pray that I stay healthy and can continue working and paying for whatever care he might need now and in the future.  I don't know God's plan and that is probably a positive. 


We continue to laugh and love each other every day.  Blessings come from those laughs each day. 


Today, we giggled that the waitress did not know that Dill Pickles were made with cucumbers.  We laugh so often.  Perhaps those are things I should write about here, as well.  Not everything is dramatically negative.


Our friend Michael is taking Gary to the Bay Area to his home for a few days while I manage the movers and move the house.  He will need a list of things to be aware of in watching him.  I told him via text that he needed to pretend he was taking care of a precocious seven year old only with short term memory loss.  He responded, "Oh, so nothing has changed?  I'm just kidding."

No, Mike you are right on the money.  Here is a picture of Gary several years ago playing with a monkey in Costa Rica. 


I wish I could afford to travel with him full time....oh, the adventures we would have again.


Mike, Gary and I have all been friends for 29 years.  It will be good for Gary to get away from what will be chaotic.  I trust Mike implicitly to care for him and he is looking forward to the challenge.  Thanks to all who love us!

Dementia causes a victim to forget his friends....at least some of them.

I was off work last Wednesday, so I invited a Visiting Angel over to meet myself and Gary to see if she was a good candidate to be his assistant.  Her name is Mary Jo.

"Jo", as she prefers to be called, will work out just fine.  She is retired, very fit (nice for Gary's walks with Diva) and very patient and capable.

This Thursday was her first day.  I went to work as normal and left him with repetitive direction that her name was Jo and he was to work with her to complete the list of things to do I had painstakingly worked on to create.  

I noticed that Gary's GPS system sent me an email around 11:15 that he had left the "home" zone. This was not unusual in that I have it programmed to notify me if he goes more than 1000 feet from the house.  I thought nothing of it, as I knew she was with him.  More unusual, a few minutes later, his over 35 mile an hour speed indicator went off on my phone.  I was curious where they were headed so I logged onto the website and saw them heading south on 99.  I recieved a business call and forgot about it as I knew he was Safe.  (stop and think about the peace of mind I have with her on payroll!)

He called a little while later to report they had gone to a nature preserve, but Diva could not go in so they came home.  All was well.

On Friday morning, JO was to return at 10:00.  I awakened Gary and reminded him that Jo was coming and that they had to be out of the house for the maids to properly do their job at 10:30.  He did not know who I was referencing.  I reminded him about 10 times before I left.  He called me several times during my commute to ask details about maids, Jo and what they were supposed to do together. He got very upset and we did not have a pleasant exchange.  So much for my makeup for the day.  He was quite overwhelmed when I reached work and we hung up the phone.  I had itemized the trip to Sprouts for shopping, a walk and stocking the groceries when they return home. He seemed clear.

At 9:30, he called me to tell me that he and Diva were leaving to go for a walk.  I very vehemenlty demanded that he stay home as Jo, would be there at 10:00 and he had to let her in the house.  He said that the maids had arrived early and that he remembered that they had requested to not be there with him alone (without an assistant).  He remembered that fact!

I reminded him that he needed to stay there for 1/2 hour until Jo arrived.  He agreed and we disconnected.

At 10:00, the office of Visiting Angels called to tell me that Jo was at the house, Gary was not there and the maids would not let her in the house.  I explained that Gary must have gone to the park and that I would call Molly Maids and tell them to let her in so she could check-in.  I called Gary on his GPS (his phone was on the counter at home) and explained that Jo was at the house waiting for him, the maids would not let her in and that he needed to go home immediately.  He understood and said he as on his way.  Meanwhile, the office of Molly Maids called to say there was a strange woman outside our house trying to get in and that Gary was not there.  I explained that Jo was an employee and they needed to provide her entrance.

Then I called back to Visiting Angels to hear that Jo had proactively driven the neighborhood and found Gary and Diva walking down the street toward home.  All was well.

The whole time, I was supposed to be on a corporate conference call.  Dag blast it! 

Later, they called to report that all grocery shopping was completed and items were stored in the pantry.  The poor woman survived. At the end of her shift, Jo left and Gary called me immediately.

Her report was thorough and she will return on Monday. He still does not understand the need.  Having someone there gives me peace of mind....well, sort of. I never know what he is going to do next.

Today, we went to breakfast and had a delightful talk with a local retired man who had a very colorful, full life.  He gave us a copy of his book.  I look forward to reading my first book in a long time.

We then went to our old neighborhood for a barbeque. Everyone there was someone that we know very well after living in that area for 6 years or had at least met about six
months ago at the last gathering. He remembered very few people except for the hosts, who are very dear friends.  He did not remember that we had lived in the house across the street for so long.  He tried to act social but I could tell by his behavior he was very uncomfortable.  He reintroduced himself to two people who refer to him as "uncle Gary".

When he refused to eat as he was overwhelmed.  After 45 minutes of sitting in a chair, not interacting, he said, "I really need to leave." I did not hesitate to grant his wish.  After that, I did not want to be there either. 

I took him to the nail salon. He is always happy there.  It worked for a while. 

After pedicures, we came home and he asked for dinner.  Our friend had suggested I bring a plate home.  He ate but seemed very overwhelmed again.

We talked about it and he indicated that he wants only peaceful encounters, positive information and no conflict.  He cannot handle alot of stimulation. 

I am not sure how I could ever provide Utopia for him.  Since I don't know this solution, I am reduced to figure out how to keep him as calm as possible so my life will be sane.  God is good.

Melancholy and Joy

Gary and I went to Dinuba and back on Thursday to pick up Heather and Alexander for the weekend. She was kind enough to help us out while I went to a two day Leadership Retreat.  They stayed with Gary while I headed to the California foothills to assist with the Rancho Cordova Leadership Retreat.  

While I was gone, he called me many times and could not remember from one call to the next whether or not I was coming home Friday night, Saturday night or some other time.  Heather says she told him repeatedly but he just could not retain it.

I called him on Saturday morning before the retreat re-started and awoke him.  He said that he missed me all night.(Heather reported that he came in her room 6 times throughout the night asking various questions).

After I spoke with him, I realized how very much I miss him and I don't mean just last night.  I miss the man I married.  I miss the guy who could help me think through and solve complex problems.  I'm dealing with some pretty important decisions right now and I have to rely on acquaintances and Heather rather than my husband.  Processing is hard when I am used to having his insight.  She was very helpful in letting me process through some difficult decisions that I cannot share here. 

I spent alot of today NOT "being here now" at the retreat and feeling melancholy about the grief I feel over losing him, even when he is still here.  He still looks at me with such love and intensity but the whole picture is now missing. I am grieving a man who is not dead.  The pain is excruciating.

When I got home today, both Alexander and Gary were taking naps so Heather and I had some time to plan, process and discuss their moving in with us early next year.  Since she spent two days with Gary, I asked her feedback on his brain capacity.  She sees a decline since she was here a couple of months ago.  We agreed that he needs an assistant more hours than I had originally planned.  It will be expensive until she gets here. 

In the middle of our conversation about my grieving for him, I got very emotional and we both cried.  She sat in the chair with me and expressed that she too misses her Dad.  She never really knew well the Gary that I knew.  I am sad for us both.  The bond we are forging will be very strong a nd we can rely on each other.  She is the daughter I always wanted.

He realizes that they are coming to live with us and he is excited to have his daughter with us.  He may not remember that tomorrow, so the good news is I get to share the news with him all over again and watch him get excited at the thought. 

He is currently watching "Dora the Explorer" with his grandson.  Pretty cool.

Please support!

A woman from Gary's C.L.U.B. is walking in the Alzheimer's Assoc walk at the end of the month.  Please support her:

"I am participating in The Alzheimer's Association Walk to End Alzheimer’s® on September 27th. If I raise $100 - $5,000, half of it will go to the Rancho Cordova drop-in center (The C.L.U.B.) for people with dementia and the other half will go to The Alzheimer's Association.

The money that The C.L.U.B. receives will help increase the number of days that it is open and helping our community. The money that The Alzheimer's Association receives will go towards Alzheimer’s care, support and research. Two good causes, one good walker!!

For those interested in donating, please go to http://act.alz.org/goto/RebeccaG.

Every donation, no matter the amount, goes towards local support of a person and his/her caregiver and global support of ridding the world of a truly devastating disease. "

Thank you,
Rebecca Graulich

A Morning Daydream

I took last week off to prepare the house for moving.  Gary and I spent the entire time together. I really got to see his strengths and weaknesses.  One thing learned, the calmer and less stressed I am, the better he functions.

He cannot handle stress, conflict or realizing that he is not thinking clearly.  If given a simple task and the freedom to ask lots of questions (repetitive questions), he can remain calm and function okay.  Most days....impossible.

He is very disagreeable when it comes to hiring an assistant.  I need to do final paperwork but will do in the morning.  An assistant can start on Thursday for four hour stretches. Its expensive.  But not as expensive as some of the possible alternatives.

This morning I awoke to a sleeping Gary.  For a few minutes I imagined that it was many years ago before his disease.  I envisioned going down for coffee and bringing it back to him in bed.  For this part of the dream, he sat up, said good morning and was clear, perfectly clear.  We talked about everything that happened in the last week...he remembered everything.  We talked about the future and our house in Panama. We planned some more trips to foreign ports and we just talked.  I did not have to remind him of anything.  I did not have to repeat myself twenty times before we went to church about what the day would bring.  We spent the day just talking and being in love.

But, I realized I was daydreaming.  When he did awaken, he said a sleepy "good morning."  He also asked what day it is; what is planned for the day?  I went down and made breakfast and got ready for church.  The rest of the day was normal...well, normal for 2014.

Happy anniversary honey.

 

Preparing to move is a less than desirable activity = Moving Sucks!

On September 9, Gary and I will have been married for 29 years.  In that time, we have moved to different places of domicile 25 times (it might be more, I lost count and he doesn't remember anymore, so I can't ask him).  In November, we will move again to a house very near the college where I work. 

In the past, when we moved, Gary always took the lead on the packing, sorting, etc.  When we sold our house nearly two years ago, he was no longer capable and I took the lead.  Since I ran out of time, we packed most of what we really needed to purge and not move again.  So, now, we face either purging our junk or moving it again.  NO way. This time, I am in charge.

So, this year, instead of going on vacation we decided to stay home and organize, purge and get ready for packing.  We started Saturday having Gary try on all the pants in his closet to see what is too small.  We gave away twenty pairs of slacks and jeans.  He hung in there pretty well through his own closet, but got a little stressed when it came time for mine.

Gary assisted by taking my "too small forever" clothes out of the closet and folded or hung them as I tried on the next outfit.  This process took us hours. He really liked helping and making a difference.  Since the clothes were going to charity, I made a spreadsheet of new and used value for tax reasons.  Between yesterday and today, we gave away nearly $10,000 worth of professional clothing. 

Yesterday morning, we hauled it all to the American Cancer Society Discovery Store after church,  It took us 20 minutes to unload it all.  Gary kept saying, "why don't you just lose weight?"  That is a great question Gary.....   We then headed to Applebees for all you can eat ribs.

     

When we got home, we spent the rest of the day purging and organizing our giant pantry.  This space does not exist in the new house.  In fact, we are not sure what we are going to do with all the stuff.....perhaps we need to make a second sweep of each room.

By the end of the day, we were both exhausted and overwhelmed. Those two feelings are not a good mixture.  I got very irritated at everything Gary did or didn't do.  We should have stopped but we kept going.  He was really started to not process well and reached a point where he said, "Honey, I need to be blatantly honest with you.  I have been thinking of divorcing you." 

That is a new one.  It hit me like a ton of bricks.  After twenty minutes of crying, screaming, yelling and then calming myself to explain to him why divorce is not a good option for us.  Especially since we love each other so much and that his dementia had just kicked into high gear. He was frustrated and that was a programmed response from three other marriages.

He snapped and realized what he said and how much he had hurt me.  He spent the rest of the evening telling me that he never really meant it and testifying to his love for me.   I knew all that.  I appreciated the apologies and the extensive foot rub.  :)

Today was productive and not quite as painful.  We are both beat up and tired.  Crock pot Chicken and Dumplings saved the day with an easy dinner. 

The rest of the week will include cleaning out Gary's workshop and the garage.  That will take two days if we work at a fast pace. 

One thing I do know:  I cannot have him here while I have movers pack and unpack this house.  One of us will suffer irreparable damage.  At least I have until November to figure it out.  Anybody want to volunteer to take him on vacation?

Voicemail messages...this is your husband

"Hey honey, this is your husband." 
"Hey honey."
"Hey there."
"Hey."

These are all greetings I have in my voicemail messages from Gary.  Hundreds of them.  All the beginnings are similar.  Of course, messages followed with contents like the following:

• Where are the keys to the BMW? (Gary's license was invalidated by the state when he was diagnosed with dementia and I have to hide the keys because he does not accept the decision and appeal.)
• Where are the plates?
• I can't find Diva's water bowl.
• The bus is late.
• If you don't tell where the BMW keys are, I will hot wire the car, do you understand?
• I can't find my wallet.
• The maids stole my wallet.
• Is my wallet in your car?
• I'm sitting in the massage chair and I can't turn on the television.
• Is there anything you need me to pick up at the store? (He can't drive, remember?)
• Is there enough room in the new house for us and the kids?
• Have I told you lately how much I love you.
• I can't find the green pepper plant.  Is it in the yard?
• I just left you a message to tell you I love you.
• I want you to take me to the DMV so I can take my driver's test.
• Can you tell me where to find Diva's poop bags?
• I need the credit card number....
• I have a customer service rep on the phone and I need the credit card....
• Diva and I walked a really long way, can you come get us?
• I applied for a medical job today.  Why won't you let me get a job? 

Everyday is the same.  Everyday is different.  No worse, no better.

I am starting to interview companions for him for when he is home on Thursday and Friday.  I haven't told him yet....not sure how I am going to present that idea. 

Here is the job description:  "....must have computer skills, be bonded, be able to walk two+ miles and keep a 65 year old, high-functioning dementia victim out of trouble..."