"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.....