"No! No! No! I live HERE!"

"Honey, I am sorry to bother you at the office but Cheryl is sitting next to me on the sofa and you really need to talk to her."  So, Gary handed his phone to Cheryl (his caregiver)who proceeded to tell me that they had just returned from their walk with Diva and that Gary had misbehaved.  She sounded quite disturbed, as did he.  I asked what happened and she proceeded to share with me her first experience with him being "independent and bull-headed". (THose are my descriptions, not hers :))

Apparently, they walked up our street which is a typical suburban street with near identical homes on either side of the street.  He had seen a car in a driveway of a house a few doors down and proceeded to think it was mine and that he was home. As he approached the front door, Cheryl realized his confusion and told him that he was at the wrong house.  He ignored her and proceeded to get out his key and moved toward the door to unlock it.  She quickly escalated her communication to protect his actions and he then turned into the ten year old boy that many of us know and love.  "NO! NO! NO! I live HERE!"  Before he could finish putting the key in the door, she pulled his hand away and moved him back to the sidewalk. 

They were both quite frustrated.  He called me to say that she was inappropriate and wanted me to rebuke her.  NOT.  At the end of our conversation, he had apologized and agreed to be compliant with all "ADULTS" who might take care of him.  I actually had practiced this same speech with my 3 year old grandson just last week. I explained that today was Cheryl's last day with him due to Heather having moved in with us and that he needed to be very nice to her.

Gary seemed to understand.  I sure hope so.

It feels lately that many of my days are filled with endless hope of his compliance with.....well, whatever situation we are dealing with at that moment in time.  Recently, I have also noticed that his behavior triggers an acceleration in my levels of anger and my response. I go from zero to sixty in being perturbed, frustrated and angry.  I would never hurt him but words can be just as hurtful as a strike.  Biting my tongue has become imperative for the sanity in our household.

Can you walk any slower?

I spent the whole day with Gary and I am truly tired and frustrated....so is he.

We got up super early for a Saturday so that we could get ready in time to go for breakfast before we had to drive to Elk Grove to get our haircuts.  I watched Gary carefully to make sure he was progressing through his morning ritual to ensure we could leave on time.  At some point, I stopped watching him so he forget to shave.  He looked quite unshaven all day. 

He poked through everything so we did not have time for a menu breakfast and went to Carls Jr for a quick meal.  We arrived at the new salon (same hair professional at a new salon) right on time.  Normally, she colors my hair and cuts Gary's hair while mine is "cooking".  He was a little unsettled at the new place and said hello to Everybody who walked in the shop and asked all kinds of interesting questions.  Two and a half hours later, we left and headed to Pet Smart and Sprouts. The theme for the day was "how slow can you go?"  He could not have a sense of urgency nor move beyond SLOW all day.  Everywhere we went, he poked along and walked behind me.  I repeatedly asked him to keep up with me, held his hand, etc. 

He just couldn't seem to think clearly all day.  I was so frustrated most of the time.  I get very irritable in these situations and am not pleasant. He knows it and gets overwhelmed. 

We came home and took a nap.  It took him hours to come down.  We went for a long walk with our dog and he moved like a snail.  On the last stretch home, I thought he would need carrying.  Upon reaching the front door, he asked for water and said he was hot and wanted to put on shorts.  Then, very quickly, he announced he wanted to go for a longer walk.  Diva was done and frankly, so was I.  He fought me and kept asking until I distracted him by sitting in our back yard.

He took Sedalia and Tension Tamer tea.  I fixed vegetables for dinner and as we sat down I noticed he was not overwhelmed.  I must admit it was pleasant for a little while.

He cleaned up all the dishes and loaded the dishwasher without asking.  He fixed ice cream and cookies, fed the dog and is sitting quietly.

It is amazing the ups and downs. 

Blog title change: Go to Your Corners and Come out Loving!

On Sunday, I was talking with a very dear woman whose husband is in an Assisted Living Facility with Alzheimers.  They have been married for eons of time (not sure how many years) and are now living apart.  She knows of Gary's dementia and sees him on a weekly basis.  She quietly asked me, "How quickly is he progressing?"  I answered that I am not sure how to answer the question compared to others but that he has declined but he seems manageable.

Today, I dropped him off at his CLUB and watched him stand at the door while an attendant came to let him in the locked environment.  We had a great breakfast immediately before with lots of very lucid conversation.  When he saw the woman, he lit up and went into "hug" mode.  She came out, hugged him and motioned to me in the car to see if I was ok.  I gave a thumbs up and he went into the building without ever looking back at me or acknowledging my presence. 

Months ago that would have devastated me, but today, not so much.  As I drove away I considered the conversation from last Sunday.  People who know others with dementia ask "how is Gary?" but i realized today the real question is:  How quickly is Gary declining?  Everyone except me seems to know that he will never get better.  I have been holding out hope and continuing with treatments, supplements, gimics with a private hope that someday he will get better.  He will not get better.  I need to face that fact. (Miracles excluded)

So, with that acceptance, I am now looking at behaviors that I have been participating in toward the end of "recovery".  What can I stop doing?  What angers me that shouldn't? 

One of the steps to grieving is acceptance.  Okay, check that one off.  I accept the fact that my husband has dementia.  Perhaps I should rename this blog from "Go To Your Corners and Come out Fighting" to "Go To Your Corners and Come out Loving".  I will change it. 

Perhaps this can assist us both in being calmer, less frustrated by expectations and overall, much happier.  For all you prayer warriors, I always request that you pray for God's will.  If its His will that today's acceptance is correct, I pray for more Loving. There is nothing to fight about in this situation.  We will not win the battle.

"Where is my deodorant?"

I have said to my Management Team on numerous occasions, "I don't know how you guys with kids do it in the morning!"  I didn't realize until this week that they didn't necessarily know what I was referencing until Erica and had a more specific chat.

A typical morning for Gary and I goes like this:

We wake and I usually head toward the kitchen to make coffee and smoothies and put out all medicine, vitamins and potions for the day.  Gary's lunch pills have to be put in a plastic mini-bag so the volunteers at the CLUB can administer them.  I give him his morning pills and treatments to ensure he gets them all.  While Gary has his coffee, I shower and start getting ready.  I usually remind him several times that he needs to get in the shower. 

He always prepares his clean underwear to bring in the bathroom prior to showering.  "I need a pair of underwear, where is it?"

"Its in the drawer marked 'underwear' in the highboy."
"thanks."
 
He often does this two or three times prior to eventually getting in the shower.  While he is in the shower, I usually replace the extra pairs and put them in the drawer.

When he does get in the shower, it is usually a 15 to 20 minute adventure.  He often washes his hair three or four times, washes his body many times and reapplies conditioner....no matter what guidance I give him.  He is very head-strong and usually does not listen to me whether I am nice or forceful.  

Next, we go through the deodorant, shave cream and razor search.  All his belongings are on the left side of the bathroom either centered around the sink, in a shave mug or in his drawer. 

"Honey, where is my deodorant?"
"Its in the far left hand drawer where it is everyday." A very sweet "thanks" usually follows while he applies his first application.  Soon after, he asks if he needs to shave.  I usually say yes and he asks, "Where is my razor?" 
"In your shave mug on the back of the sink." 
"Where is the shave cream?" 
"Same Place, in the shave mug on the back of the sink."

After shaving, he usually asks where his deodorant is kept.  Even with a reminder that he has already used it, he reapplies. 

"Where is my comb?"
"Left hand drawer, next to your deodorant."  I often show him in addition to telling him and with each repeat I get more animated. 
"Do I need to shave?"
"You already did." 
"Oh?  How did I do?"
"Let me see, did you remember the left side of your neck?  You always forget that side." 
"Check me. "  I usually re-shave that side.  Perhaps the lighting on that side is not good.
"Honey, where is my deodorant?"

Sometime during all that, I pick out his clothes including t-shirt, socks, pants, shirt and shoes.  I put them on the end of the bed where he can see them when he comes out of the bathroom. Most days he asks "Where are my clothes?"
"On the end of the bed." 
"Where are my shoes?"
"On the floor at the end of the bed."
"Did I use deodorant?'

During each of these interludes, I had to speed him along as much as possible due to his pace.  In the middle of each of these above scenarios, he is folding tissues, stacking the change out of his pockets, folding and refolding the towels, brushing his teeth, drinking coffee, etc.  The process is long.

Once dressed, we take inventory of what goes in his pockets. Combs (multiple).  Wallet, cell phone, tissues (lots of tissues), house key, pill packet and more tissues.

Out the door.  In the car.  "Please buckle your seat belt."
"Drink your smoothie." 
"why didn't you turn left back there?"
"Because we go straight to go to the CLUB."
"No we don't."
"Honey, I know where to go.  I take your everyday."
"Where are you taking me today?"
"To the Club."
"Okay. How are is it?"
"Less than five minutes."
"That's not right.  It takes much longer."
"No dear, we moved to Rancho Cordova so it only takes a few minutes now."

I drop him off, kiss him good bye and watch him until he is inside the buzzer door with a volunteer.  He is always greeted with hugs and reciprocates...no matter how stressed he is, when he hits that door, he is fine.  Then, I go to work. I almost always feel frazzled, stressed and worn out.

My next writing will focus on a day this week when he was clear. 

Yep, my husband has dementia.

On Saturday, Gary and I ran some errands, got our haircut and drove home through a mega storm.  He was a little foggy all day but in some ways more clear than he has been in a while.

There was no discussion regarding the date or day of the week.  While we were eating dinner, he asked if we were driving to Elk Grove to Cornerstone Church.  Not only did he know the day but the name and location of our church.  There were several other conversations throughout the night that had similar awareness clues. 

I have been experimenting with Medium Chain Triglycerides as a treatment.  I will keep you all posted on the progression of this treatment. It is based on Coconut Oil.
I could only attribute this improvement to this treatment.  It was clear but short-lived.

Today was a whole different story.  I knew upon saying "good morning" that his reaction was one of sluggishness and slow-moving actions toward getting ready for church. We made it to the 10:30 service and he was very distracted during the service even though he grasped the content.

It was raining "cats and dogs" as I slowly drove home.  Traffic and the storm made coming home very stressful. I explained several times that we had to pre-pack for our trip next weekend.  5 or 6 times, I reiterated that our granddaughter is getting married in Fresno and that we need to leave on Friday.  He asked a few questions but did not get the concept as I started to get out socks, ties, etc. He got very agitated and at one point said, "Excuse me, why are you in Ada's closet?" 

"I am Ada." 

"No, you're not.  How am I going to explain to Ada that you are packing clothes from her closet?" 

"I am Ada.  Who do you think I am?"

With a  slightly sheepish look, he responded, "You are my wife."  When I inquired about my name, he looked right at me and said the name of his third wife "AnnaMaria." 

I laughed as that was a new one.  Normally, he thinks I am Kurla (wife #2) or his daughter Heather.  I explained the order of the marriages and the time frame of divorces and our marriage of 29 years.  He looked at me as if I had horns.

He was lying on the bed and seemed very sleepy.  I suggested a nap.  He agreed and I stretched on the bed beside him. He reached over and hugged my nose which is a long standing touch of endearment that we have shared.  Since this was such a familiar touch, I asked if he knew who I was.  He said that I was Ada.  When asked of our relationship he said, "You are somebody from the past but I'm not sure." This week, Heather posted a picture of herself, her Mom (Kurla) and her daughter, Samantha.  I showed him and explained that at the wedding, he may really get confused because we will all be there....in one room.  He said that situation should be interesting.  I dropped the subject and we slept.

I awoke before him and started dinner.  He came to the kitchen and I could tell by his look and greeting that he was back to "normal".  Curiosity had me. "Honey, can you tell me my name and our relationship?"

"You are Ada Mae and you are my wife."  I finished the sentence with "the best wife of your life."  He smiled and said "Of course!"

As I reflected over the earlier scenario, I felt a twinge of sadness for the memories we have shared, as I know many of them are in his head but confused with other things.  At least I still have them and can recall them if he should have moments of wanting to know.

He sat tonight and wrote a note in a Valentine and gave it to me early.  The note makes sense and is full of love.  However, his once particular and perfect hand writing is starting to morph into a sloppier, larger form.  That is another sign....yep, my husband has dementia.

Could I please have a refund on the cruise my husband ordered?

I received a text at work from Gary's Visiting Angel, Jo.  "Oops, you better check your credit card.  Gary is hiding in the back room and I think he bought something." Of course, I asked Gary that evening what he had purchased that day and he coyly responded, "I don't remember....but I think I bought something."

Sure enough.....a $1507 charge showed up on the bank account. Gary had purchased a 7 day cruise and 6 night hotel stay to Florida and the Bahamas.  He had received a call and bought the exact same cruise we took a few years ago.  Dang it!  I knew I would face an uphill battle getting that cancelled.

So, the next morning I embarked on the adventure of getting a credit on the credit card.  I knew the obstacles were as follows:

• I am not the one who made the purchase.
• It was not my exact credit card.
• I had to get them to believe that he really does have dementia and that I'm not just a disgruntled wife trying to control her husband.

Ring.  Ring. Ring.  After punching about 20 choices on the interactive voice response system and waiting 10 minutes on a human, I explained something similar to the following:  "Hello, my name is Ada Gerard.  My order # is xyz.  My address is.... and I would like a refund due to my husband purchasing this vacation while suffering from dementia."  "I'm sorry lady but the address you gave is not correct."  I gave our two previous addresses and phone numbers as proof that my husband really does not have any business buying a cruise in his mental state.  Of course, the address Gary had given was our last address in Elk Grove where we had lived for two years prior to moving last November. 

I did not think to get the name of the operator nor officially change the address before I was put on hold to be transferred to another department.  After 5 minutes on hold, the phone disconnected and I had to start over.  I followed the same monotonous process as above and finally reached another human who had no notes in their system of my previous call.  So, I started over and explained the whole event and that I wanted a full refund.  I got the operator's name and made sure the new address showed in the system.  She explained that she could not perform the reversal and that she had to transfer me to another department.  Yes, once again, the call was disconnected. 

I was slightly furious.  I went through the process again and did not have to repeat as much since the last operator had put an explanation in my records.  I again requested a full refund.  She explained that since Gary was an authorized user on the card that they would not give me a full refund, but rather a partial refund and an $800.  I was started to come unraveled.  I said this is absolutely unacceptable and that our cards had been compromised by by husband and that I wanted a refund.  Because i made the mistake of saying the word "compromised", she transferred me to the fraud department.  Of course, that transfer worked.  They were starting to file a police report when I AGAIN explained the situation.  I asked to speak to a supervisor ( Iwas told his name was JOE) and that I wanted to file an elder abuse claim.  Yes....the phone was disconnected. 

I called back AGAIN and asked for Joe.  Lo and behold, I was transferred to Joe who aswered the phone with said alias.  During the transfer, I gave significant thought to how I might approach repeating this information for the umpteenth time.  Should I take the upscale, forthright, educated approach?  Should I go hillbilly/redneck?  Should I use the ghetto approach? 

I chose to utilize my education and said,  "Joe, this is Ada Gerard and my order number is XYZ.  Please take a moment to read me the notes made by your employees in the last hour about my account." He did!  He asked how he could help me.  I ranted that I thought a partial credit under the circumstances was absolutely cruel and subject to Elder Abuse laws in the State of Florida (his office location).  (the sad part is that I do know the phone number to the office in Florida to call as I had experienced this with another Florida company). I demanded a refund and he quietly said, "Ma'm, I have already processed your refund.  I am sorry for the inconvenience.  Your account will reflect the refund iin 8 to 10 days."  At least I had enough money to transfer from savings so as to not overdraw my account. 

It is amazing that I was one the phone for over an hour trying to undo something Gary had done in probably 10 minutes.  The anger and emotional experience was unbelievable.  I wanted to go home and tear him a new orifice.  That would have been a waste of time and emotion, as he doesn't get it. 

Later in my account auditing, I also found that during the same two days that he had the card, he had also ordered two sets of a product off the television.  One was delivered to our house after being forwarded from the old address.  The other never showed up.  Upon calling the company to get return authorization, it was discoverd that he had again charged over $400 in caffeine-laden vitamins and had them delivered to the old addresses. I would have to file a postal claim. My car is now full of to-be-returned products that need to go to the post office. 

Lesson learned:  When Gary goes out with a caregiver to the store, give him cash not the credit card.  Also, if he does require a credit card....get it back that very night.  He knows not what he does.

"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!