Yesterday was Saturday, and on Saturdays we usually run errands.  The traffic was crazy, and even though we weren't far from home, I just wanted to make it a short day out on the roads. To my surprise, my sister was fine with that.  We had a peaceful afternoon in the quiet of our home, and actually took a nap for the first time in a long time!

Last night, as I was sitting with Lizzie on the sofa waiting for a friend to come over so we could go to a Toys 4 Tots Xmas party, she asked, "Where are you going?"   Now I always have to come up with something creative so she won't respond by asking me why she can't come along and then follow with playing her pouting card so I feel guilty about going out without her.  I responded with, "I'm going to a party to look for a new boyfriend."  (Well, I can hope, can't I?   LOL) Her response touched my heart so much that I almost didn't go!  "You don't need a boyfriend, twin sister.  You have me!"  Ah yes ... a beautiful ending to a pleasant day.

Worthless Stress

I drove Lizzie to work this morning, as is sometimes the case when something unexpected happens and a caregiver cannot work in the morning.  What always amazes me is that I am usually stressed out about this because these circumstances make me late for work.  This morning snow was falling, and road conditions were poor … stalling traffic to not even 5 mph on the freeway.  However, as my fingers firmly gripped the wheel, Lizzie sang her interpretation of her ride with me just as she usually does.  “I’m going to work first-class today … in style with my twin sister!”  I took a deep breath when I heard this; glanced over to see her radiantly happy smile, and my stressors seemed to fall into perspective.  Thank you God for using Lizzie to calm my soul.

 

A Great Weekend

What a wonderful weekend the 2 twin sisters have had ... Praise God!  It has been such a long time since Lizzie has been actively engaged in our lives together as sisters vs. in her own little world with her committee.   Oh, we didn’t do much.  It seems like weekends are so filled with all the mundane aspects of life as I try to keep the house in order and get all the errands ran so the week itself isn’t so stressful, and I don’t have to feel like I am trying to beat the clock working around the caregivers’ schedules, so to speak.  Lizzie seemed to enjoy helping me reorganize the bathroom cabinets after we went to BBY and bought some cabinet organizers yesterday.  We made avegolemeno soup, and she actually sat in the living room with our friend Randi and me as we did a Bible study.  Today it is very cold and windy outside, so we have both been content to stay in except for a drive to the drugstore for RXs.  I LUV these kind of days with my sister because they remind me of the days before AD. 

Mysterious Light

I thought it most strange that I would have left the living room lights on all night when I got up this morning and went into the kitchen to begin my morning routine.  I wondered if I am starting to lose my mind and if I left them on all night.  The possibility of an intruder entered my brain, and I checked all the doors which were locked and secure.  The dogs hadn’t barked all night, and I am certain I would have heard them had they done so.  Nothing looked disturbed in the house; all was as I left it the night before.  No, I specifically remember I turned the lights off because I also remember telling myself to be careful not to stub my toes on the side-table I most recently placed in the dining room.  Elizabeth must have been walking around the house during the night.  I must place a reminder note at my bedside to lock the front security door before I retire for the night beginning tonight.

  

Don't Want To Talk

Today was one of those days when Lizzie's brain played tricks on her at work, and she didn't want to come home. This has happened several times in the past couple of months, so I am used to it. Thankfully I have compassionate bosses! Today's call rang in a few minutes after I had already left work. I heard her agitated voice in the background. "I don't want to talk to her." "I don't want to go home." "Why can't I stay here?" "You don't understand."

No, I guess we don't understand. How can we? How can I? All I have is the book knowledge about AD ... and sometimes it's hard to comprehend exactly what it does to the brain and its functioning.

I told her trainer that I would be there in a few minutes. When I arrived and she saw me, Lizzie smiled and greeted me with a hug. Imagine that!?!?! I was totally confused, put my arms around her, and simply said, "Let's go home." And home we went without a fuss.

I am writing this 3 hours later, and we are eating dinner now. My sister is deeply engaged in a conversation with her "committee" as I refer to the voices she seems to verbally be responding to in some manner. Other than that, she appears happy and content. It's all good.

A Faded Habit

My sister and I shared a bedroom for the first 12 years of our lives.  We had so much fun playing in our rooms together, and often we just did our own thing as Lizzie liked to say.  Regardless, we were together.  I remember when we moved into the Rockwell St. apartment that had 3 bedrooms.  Lizzie chose the room at the front of the apartment with a view of the neighborhood, and I took the middle room close to the entry door just off the dining room.  Interestingly, as I am composing this post, I realize she has always preferred a room with a view when given the choice … hmmm … childhood preferences carried into adulthood!  Anyway … in that first bedroom of her own, she had a desk in front of the window at which she sat and spent endless hours playing office and watching activity on the neighborhood street. I remember Mom going in and having to clean out the desk of all the papers she used to stuff in the drawers.  Now I am the one who assumes that task!  She kept that desk for 35 years until she moved in with us in 1995 at which time her view bedroom was very large, and we bought her a gigantic oak roll-top desk.  It has been until only very recently (within the last month) that she no longer sits at her desk and plays office, and I miss this soooo much!  I used to sometimes go in and just hang out with her to chat or watch TV as she sat and kept herself busy with either reading, writing, or just fiddling with whatever.  I don’t know if these days she has forgotten about this practice; if she has lost interest in it; or if she just prefers to go to bed much earlier than tradition.  What I certainly do recognize is the change in a pleasurable activity that has been a part of my sister’s routine for most of her life.    

History Begins

Our Mom died on January 15^th, 1993; Dad on August 1^st, 2001. 

Elizabeth moved into our home on a permanent basis in April of 1995.  Prior to that and all of our adult lives, she has spent a large portion of her time with me … summers, winter and spring breaks, and weekends.  While I always thought that losing our Mother would cause our family to crumble, it was our Father’s death that influenced our lives the most.  Dad was a most predictable member and contributor to our family.  Without him, IMHO, we lacked direction and accountability as life became a free-for-all, so to speak.  I never imagined I would miss the man who caused such grief and chaos in our home as much as I did initially and still do today.

February 3, 2002

I was married to Bill at that time, and it was a Sunday.  I was President of the Philoptochos, and was off to Church early for a breakfast that was being served after the liturgy.  Bill’s assignment was to bring Lizzie to Church.  When they arrived, I was surprised to notice that she looked unusually disheveled.  Bill reported that she had a most difficult morning focusing on getting ready for the day, and that she had been upset because she believed "they" were surrounding the house with the intent of hurting her.  Later that afternoon, we sat down in the living room for a family meeting to talk about her thoughts and assure her all was safe and well in our home.  She seemed OK after that.  While Lizzie has always had a vivid imagination partly due (again IMHO) to our Mother’s influence, this was different.  This was a delusion.

A few days later our beloved cat Dillon died.  My sister chose to be present in the living room as we all said goodbye to him, and she watched intently as the vet gave him his last shots.  Death is nothing new for Lizzie.  We were raised in the typical Orthodox tradition of family funerals since we were little girls, and we have both had a firm belief about the afterlife based on our early upbringing in the Church.  We have had many pets die over the years, and so this was typical fare for us at the end of our pet’s life as well. A couple of weeks after this day, however, my sister changed and the change was a forever change in her cognitive functioning.

I remember only that it was a Monday morning.  Lizzie was in the habit of having someone go in and wake her up personally (in addition to the alarm clock) with a hug, kiss, and morning prayer.  That person was usually me, and she wakes in this manner even today.  Then I would leave her on her own to do her morning grooming and prepare for the day after which she would bounce up the stairs with “A beautiful blessed good morning to everyone this beautiful day in the Lord!”  She would prepare and serve her own breakfast, and then be ready for Citilift to take her to WARC at the appointed time.  Sometimes she would be left home alone to let herself out, and that worked perfectly fine.  This particular Monday morning, I noticed Lizzie was late getting upstairs.  When I went down to check on her, I found her unclothed in her walk-in closet mumbling to herself about not knowing what to do.  And that is exactly how she was … she did not have a clue as to how to go about dressing that day. 

That Monday was the start of a journey into the unknown for us as our lives were altered evermore.  In counseling, we call it the family dance.  We didn’t know the steps to this new dance and often tripped on each other trying to learn the motions.  I will share these lessons with you in hope that for those who are reading and are in similar circumstances … you might gain insight into your own situation.  It’s as simple as that.  I have no desire whatsoever to appear a martyr in my efforts to provide the best possible life for Elizabeth, so we’ll skip the kudos.  I am hoping someone out there will offer me encouragement and if you read something you have experienced, please share so I know I am not alone in all of this.  Deal?  OK.  TBC later then.

 

 

   

I remember Lizzie as Dr. Charlie.  She had a folder on each of her patients, which I am proud to say I am one of. She would take your temp and B.P., and check your reflexes and heart beat with her stethoscope all with the lightest touch a human can have. Then she would proceed to give you a massage that after playing baseball for over 20 years, no trainer could compete with. She has these strong tiny hands and can find a sore spot before you know it is and then was sore.

The Annual Party

Every year this time, John Ascuaga's Nugget (http://www.janugget.com/) hosts a terrific Christmas party for the consumers at WARC.  He is truly a blessing for these special-needs people ... most of whom live in a group home and whose needs are just barely tended to as I have been told. My sister looks forward to this event every year, and it has always been a highlight of her holiday season.  She has always anticipated it weeks in advance, wanted to wear something special, sat with certain friends, and given us a complete report about everything. This year was different.  First off, Lizzie refused to believe the party was today, and then she did not want to wear anything special and argued about it to the point where I simply conceded and let her choose.  Next, I received a phone call (when I was at work) from one of the supervisors at WARC telling me Lizzie was refusing to go to the party by not going and screaming and yelling about it all.  Had I not heard her in the background, I wouldn't have believed it.  "Leave me alone."  "Stop telling me what to do."  "Go away from me."  "Stop following me."  It seems this supervisor was responsible for getting Lizzie and 3 other consumers to the party, and all the others had left the building.  Lizzie was holding these few people back.  I had Lydia put Lizzie on the phone, and I tried reasoning with her to no avail. Finally I just said, "If you go to the party, I will meet you there."  Apparently that worked. When I arrived at the Nugget to check on her, she was sitting in a booth with 3 other supervisors having a grand ol' time and seemed oblivious that I showed up to see how she was doing.  (Another different thing ... she always wanted family and friends to attend this event with her and welcomed us with open arms.)  So once I saw she was OK, I went my own way. Here at home this evening, Lizzie is fine in that she is calm and appears quite content.  Lydia described her day as upside down from the very beginning at WARC ... another flip-flop day ?!?!?

Too Many Lights

This morning when my alarm started playing the radio at 5:45, I awoke to much bright light! Lizzie was in her bathroom (or ladies room as she prefers to call it) and had turned on the hall and all the other bedroom lights as well. I'm thinking this is way too early for her to get up as I stumbled over the dogs still half asleep to see what the heck was going on. She was in the bathroom and was tugging at the top her nightshirt. When she looked up and saw me, she said, "Can you help me, Honey? Something is bothering me and I want to get it off." So I looked carefully considering the possibilities only to find absolutely NOTHING on her shirt. I told her everything is OK now, and she could go back to sleep. Lizzie asked, "Are you SURE?" and assure her I did. I went into the kitchen to let the dogs out, and by the time I returned to the hallway, all the lights had been turned off (by Lizzie), and she was curled up in bed all snuggled under the blankets fast asleep. When she awoke again an hour and a half later when HER alarm went off, she didn't reference that occurrence at all. Nor did I.

Her trainers at WARC reported that she had a good and peaceful day today. I will tell you more about her days at WARC in another post. Readers can learn more about Washoe ARC at http://washoearc.org and I can tell you I observe that when she has a peaceful day there, her evenings at home will be settled. For example, she has been occupied with the daily newspaper for quite some time now at the kitchen table, and I just heard her say to herself, "I had better get my act together" as she hustled about putting it down and trotting off to the bedroom to get ready for bed. That's kind of like the old Liz before AD.

AFTER THANKSGIVING

Oh ... I had so many things I was going to do today ... none of which happened!  We did go to see Diana and Frances.  I took the dogs with so I could take them on the Steamboat ditch trail walk for some exercise to work off some of yesterday's fantastic dinner at the Clark's.  After the walk, we all visited a bit and when it came time to go home, Lizzie refused to leave and insisted she didn't want to go home because it's more fun at Di's house.  She was quite argumentative, and Di simply suggested I leave her there and let her spend the night.  Sounded like a good idea for me since I had plans to go out with friends in the evening.  So I went home and got dolled up for a night out of dinner and dancing before I went back to Di's house with Lizzie's things for the night.  To my dismay, she had done a 360 and was crying while telling me she wanted to go home.   Eventually (30 minutes later) she was calmed down and wanting to stay.  She ended up having a great time, going to bed early, and when I went to pick her up the next day, she started the cycle all over by not wanting to come home.  This time, however, home she came and yes, she had a good day!   Flip-flop, flip-flop!

HOW TO ADD YOUR OWN POST

Every day I learn more about blogging ... my new hobby (although I haven't yet figured out why the photos sometimes disappear).  I will be sending an invite-to-post to all of my friends I have an email address for at this time.  This means that if you follow the directions, you should be able to create a NEW post of your own on this BLOG.  If you just want to write a COMMENT in response to another POST, simply click on the COMMENTS link located directly under the post itself.  This is easy, actually ... it just takes a while to figure it all out. If you do not receive an invite, please tell me in the COMMENT section below this POST, and I will include you ... it's that easy.  I am wanting to create other BLOGS as well, and you can find the links to them in my profile (way down at the end/bottom of that page) on this BLOG if you are interested.  I remain TheGreekDiva now a.k.a TheHappyBlogger ... HA HA HA HA HA!

MY FIRST POST

Today is Thanksgiving Day, 2008, and in spite of the day itself, I found myself feeling an overwhelming sense of thanks to God for all the blessings He has so graciously bestowed upon me ... Blessings of friendships of which are more like family than friends, friends and relatives who I know love me, a terrific (and hopefully secure) job, a warm home with a fireplace for the winter nights just around the corner, my wonderful pets, the knowledge of and love for my Lord Jesus Christ, and my twin sister Elizabeth.

 

In the wee hours of this morning, our beloved cat (of 14 years) Java Bean Galine died.  Even though she was only visibly ill for a week, the progression of what happened to her is a long story.   At this hour, I am able to simply say she was our “Kitchen Cat” who will be missed dearly.  My greatest dilemma sitting in the Veterinary ER was “what will I tell Elizabeth?”   You see, in the past when we have lost a pet (and there have been many because we both LUV animals), my sister’s responses have varied from the most practical to the most detached form of despair which has resulted in either a total inability to express herself verbally or to function on a most limited cognitive level.  Everyday with Elizabeth is different these days, and I did not know what to expect or how to tell her the news when she awoke this morning.  I chose to wait until she came into the kitchen for breakfast, and I asked her to sit down with me because I had something to tell her.  Yes, her reaction was different than it was 2 years ago when we lost our beloved Ali Dog.  Elizabeth simply threw her hands into the air and then slapped them down onto her legs, and asked, “Why did God do this?”  "Who is going to sleep with me now?"  "Can we get another one?"  And then she wanted her breakfast. 

 

I broached the subject a few times during the day (probably because I needed to talk about it more than she did), and each time I merely got a brief expression of exasperation from her.  Yes, totally different.  And Elizabeth is different in many ways.  Hopefully the readers of this blog will learn a bit about what it’s like to live with an adult with Downs Syndrome as well as the process of dementia characteristic of adults with Downs.  It’s my understanding from the research I have read that my journey has and might continue to be totally unique to Elizabeth.  Time will tell, I would suppose.

 

Elizabeth loves to drink a cup of tea after dinner and tonight not only did she LUV the tea itself; she was totally engrossed with the cup.  This cup was white with a decorated border of pears, leaves, and other fruit around the top of the cup.  My sister sat totally focused on this border for a good 20 minutes.  She held it in both hands as she turned it around and around and around, all the time expressing glee and pleasure at the pretty cup.  Interestingly, some one at the table suggested that it must be nice to be into one’s own little world like she was at that time and not to have the cares of the world like most of us.   I’ve been pondering that statement for hours and wonder, “Could this possibly be true?”