Friday, August 30, 2013

Happy Feet

I think I’ve written in other posts that mom’s latest fixation is taking walks. We have concerns with her walking by herself, so to prevent catastrophe, we have “babysitters” over daily to keep an eye on those happy feet.

A couple of weeks ago, on a Friday, a lady from church was over watching mom. Mom was adamant that she was walking to her sister’s house that day (about 1 - 1 1/2 miles down the road) and was quite annoyed that people were over everyday to visit when all she really wanted to do was go for a walk by herself. This sweet sister from church told mom she would be delighted to walk with her, so off they went on their walk to my Aunt’s house. Once at my Aunt’s house, my Aunt told this lady that she would make sure mom got home safely and that she need not stay with her the rest of their visit. A little after noon time, my cousin drove my mom back home to her house.

Today mom was at it again. I got a text from my Aunt Ellen to say that mom had walked over to her house. That same lady from church had gone with her and once they were at my Aunt’s house, she left mom to visit with her sister. My Aunt had planned on driving her home. However, when mom was ready to go home, Aunt Ellen couldn’t find her car keys. Waiting patiently is not an ability mom possesses any longer. As my Aunt went to change her clothes and look for her keys, mom slipped out the front door. Aunt Ellen is disabled, so she was unable to chase after her and she still hadn’t found her keys.

Meanwhile…I was picking my son up from Kindergarten and never heard the notification that I had received a new text. I had just gotten in the door, was trying to cool off from the heat outside and sat down in my chair, thinking of what to make the boys for lunch. I made a quick phone call to handle a business matter. As I was on the house phone, my cell phone rang and I saw that it was my other Aunt (Claudia). I didn’t think much about it (she wasn’t with my mom today, so I never thought it would be a call about mom) so I dismissed the call as I finished up my other phone call. When I hung up the phone, I opened up my cell phone just in time to receive a second text from my Aunt Ellen, entitled: “Urgent”. I read through the 2 texts to learn that mom had gotten away before Aunt Ellen could stop her. I texted her back to ask if she had found her keys, knowing she most likely hadn’t, and immediately loaded the boys back into their car seats.

Right as I was pulling out of the driveway, my dad called.

“I’m on my way out the door to look for mom,” I said, knowing that was exactly why he was calling.

Dad was frustrated. This was exactly the kind of fiasco that he has been worried about and has tried so hard to avoid. He tried calling mom’s cell phone, which led him straight to voicemail. His fear was that mom had become confused on her way back and lost her way. And with her not answering her phone, it added more stress to the situation.

I tried to reassure my dad that mom getting lost would be the last of our worries. I worried more about her not recognizing traffic and getting hit by a car, or collapsing from the 100 degree heat. In our meetings with UCLA, and in my research on semantic dementia, the memory of how to get from one familiar place to the next remains preserved…at least, until the later stages.

However, as I was talking with dad and driving around, I saw no signs of mom. I drove around the route that I thought she was most likely to take. Then I looped back around to try the alternative roads she could have turned down. Still no mom. I was beginning to get a little worried. I hung up with dad to call Aunt Ellen to verify what time she left her house; surely she couldn’t have made it all the way home yet. As I made my way around the loop for a 3rd time, Aunt Ellen on the line, I finally saw mom. Relief swept over me when I saw her face. I pulled the car over to the curb, where mom stopped and stood by as if she was waiting for me to drive past. She finally realized who I was and opened the passenger door.

“Oh good, it’s so good you were driving here too because I’m so sweaty and tired too and I got lost coming back; I went to Ellen’s and I took the wrong way, I went the other way instead of that way and it was so weird too and I couldn’t find the right street and then I had to go all the way back around and then I came this way too so it’s so good you found me….”

On and on she rambled, hardly pausing to breathe, let alone allow me to get a word in. Over and over I asked,

“Where is your phone? Mom, dad was trying to call you, why aren’t you answering your phone?”

When she finally heard what I was asking, she replied,

“My phone? Here, it’s broken, it wouldn’t work so I tried to fix it at Ellen’s but it won’t work so I have to take it home too and charge it…”

I tried to explain to her that she cannot leave the house without making sure her phone works and furthermore, she should not be walking alone. She didn’t hear a word I said. Instead, she rambled on and on about her walk, how much she was sweating, how the lady from church walked her to her sister’s. On and on she went until I pulled into her driveway.

“I’m glad you’re safe mom, please don’t scare us again,” I said (talking over her, of course).

Mom unlatched her seatbelt and opened her door.

“Oh I need to see if the mail’s here too. It’s so good that you saw me, I’m so sweaty I’m gonna go get the mail now and go inside.”

And with that, she shut the car door and walked away.

I am glad that mom was safe today. One thing is clear…we can’t rely on mom’s ability to navigate anymore. Sadly, that ability is declining with everything else. And now some more hard begins, as dad has to figure out how keep mom “under control” while he is gone for the day at work. :/

Thursday, August 29, 2013

Healthy Competition

I have to admit, I do enjoy a little healthy competition.

Growing up, I got a taste of competition on my high school’s swim team. There is nothing quite like the feeling of winning and succeeding; of beating your own personal best (and I’m not gonna lie, beating the person next you feels pretty good too!) I was also privileged to be in an amazing high school choir “Madrigals” group. We were phenomenal (all thanks be to our amazing director…she could make anyone sing well!!) Our group never left a festival without winning first place and we were well known among our community, performing hundreds of times throughout the year. There is a sense of pride that comes with success and feeling like a winner.

Additionally, I grew up in a fairly competitive family. On holidays and family gatherings, my cousins and I would gather together and have massive gaming competitions. I’m not talking about video games; I’m talking about good-old-fashioned games: card games, word games, board games. I have to admit, sometimes sparks would fly as one person dominated the game and the others were sore at their loss. Sometimes names were even called. I was given a “special” nickname, by my cousin, for my consistent domination in the game Skip-Bo. But it was all in good fun.

When my first son was about a year old, I began selling Mary Kay. I loved what the company was all about, loved the products, and loved the competition! I’m not saying this to brag, but I won many awards for being the top seller or top recruiter in my unit. If I’m going to do something, I’m going to do it all the way!! It’s that competitive spirit that lives inside of me. Consequently, when I became pregnant with my last child, I knew I wouldn’t be able to keep up with the high goals I had set for myself (I have extremely hard pregnancies) and I decided to put my Mary Kay career on the back burner for a while. I figured I could always return to it later, when my soon-to-be-baby was a bit older.

As the past few years have gone by, I’ve had my last baby, welcomed my step-daughter back to our home full-time (which gives me 5 kids to raise…two being teenagers!) and have had to deal with my mom’s diagnosis. Needless to say, Mary Kay is not a priority right now. And I’m perfectly okay with that. My focus right now is on my family.

Last year, I felt this need to do something to help in the fight against dementia. Maybe it’s partly that competitive (or proactive) spirit inside of me. I just felt a little “stir crazy” sitting around, thinking about this horrid disease that is taking my mom from me, and I decided that I needed to do something about it. I stumbled onto the Alzheimer’s Association’s website and found that there are “walks” to raise awareness to dementia as well as raise money to fight against it. Right away I was on the phone with my Aunt, and together we joined the walk. Several family members and friends joined with us, and we formed “Team Dee”.

DSCN6494 Joining the walk awakened that competitive, success-seeking side of me yet again. What can I say…I enjoy the “high”. I’m a competition-winning junkie! Ha ha. It wasn’t long before my dad, my Aunt and myself began competing against each other to see who could raise the most money. Our team quickly rose to the top of the leader board as one of the top earning family teams. The three of us went on to become part of the exclusive “Champion’s Club” for raising more than $500 for the association. It was an awesome feeling to know that I was competing and doing something for such a good cause. 

As soon as The Walk was over, we started planning for the next year. We set even higher goals for our team and planned to return as the team champions. I planned to start at the beginning of the year in my fundraising efforts to accomplish this goal. I had mailed out a few letters at the beginning of the year, but then life threw us all another curveball.  With the demands of raising 5 kids, the physical and emotional hardships of losing my mom, the emotional struggles I’ve been dealing with in losing my nephew, and my own personal health issues I’ve recently head has not quite been in “the game” this year and regretfully, I am not the champion I once was. I simply haven’t had it in me to “bug” people for money and had lost the motivation to even care about fundraising. I was beginning to come to terms with this and accepting the fact that I simply will not be a champion this year, when my dad suddenly started his fundraising efforts and rose to Champion overnight [he may or may not have inadvertently stolen some of the sponsors I had already asked…but we won’t go there ;) ]

And now I just can’t help myself. The fire is lit. I have to be a Champion again. I can’t let them rise to the top without me. It is not in my nature to lose.

But let’s not lose focus in what we’re doing this for. Winning is great; competition is fun and the feeling of being a part of something bigger than myself gives me a great sense of satisfaction. But more important than the medal (which I can probably go buy at a trophy shop for $5 anyhow), is why I am walking. I walk to raise awareness, to make a statement, to stand united and fight against the disease that has ripped so much away from me. I walk to stand up to dementia, to look it in the face and say “You will not break my Spirit!” I walk to raise money for research to find a cure for this disease. The causing factor of my mom’s specific form of dementia was only discovered in 2006. At this point, there is no medication to even slow down the progression of the disease for her. Research requires money. The Alzheimer’s Association also gives to those families who are affected by this tragedy. We have been recipients of some of that money to assist our family. That gives me even more reason to walk and give back to the Association. The truth is, we may never find a cure, but at the very least we can give support and help to the families affected.

I am asking for help from anyone who feels compelled to join in this cause to fight against dementia. Any amount, big or small, brings me closer to my goal and helps the millions affected by this cruel disease. You can make a donation online by visiting MY WALK PAGE or, if you prefer to mail in a donation, you can print out a form on my page as well (all the information is on the page).

To make this a little fun for everyone donating: I am giving you a little competition as well :) For every $25 you donate, your name will be entered into a raffle. At the end of The Walk (which is in October) I will choose one person’s name (at random, in a drawing) and they will win a $25 gift card to a place of their choice!

And if that’s not enough bribery for you, keep in mind that this is also a tax write-off at the end of year. We all need those deductions, right?

Thank you all for taking the time to read my blog and a big thanks to all of those who help me in my goal.

Tuesday, August 20, 2013

Mom’s Attempted Getaway

I think mom has been feeling a little confined lately. Not that there’s a whole lot she likes to do outside of the house. But I think she senses that her independence is slowly being taken away and is determined to keep a hold of it. Her newest fixation is taking walks; I’m not talking about a leisurely walk. Her walks have a purpose, a destination. Her favorite places to walk are: her sister Ellen’s house (who lives about a mile to a mile and a half up the street), the bank and the grocery store (both are half a mile up the street).

It’s good that mom wants to get out. She needs to do more than just sit at her computer all day long. Plus it’s good exercise. But there a few concerns we have with mom leaving the house.

1. What if something happens to her while she’s out and none of us aware of her whereabouts?

2. She’s in her own little world…will she notice the car driving down the road as she crosses (or any other dangers)? 

3. How will people respond to her when they come in contact with her? Will they think she’s on drugs and call the police? (this might sound silly, but it’s happened to many people with dementia).

4. We have concerns about her withdrawing money from the bank as well as buying things that she’s not supposed to be buying (such as medicines).

We know that the time she usually leaves the house is in the morning between 10 and noon. She rarely emerges from her room before 10:00 am, and she is religious about her lunch and naptimes. She seldom ever tries to walk after her naptime (before dinner); I’m not sure why, but morning seems to be primetime for getting out of the house.

We’ve taken measures to ensure mom’s safety. We try to make sure that someone is there each morning. Each week, I take a morning, my Aunt and Uncle take 2 mornings, and sweet ladies from church have been taking 2 mornings a week. Mom is growing more and more resentful about having people there in the morning because she wants to do these things alone (likely because she knows she isn’t supposed to be doing these things). Today, she thought she would be sneaky and charge out the door before my Aunt and Uncle knew what was going on. Luckily, they were on the ball. He called me shortly after 10:00 to let me know that mom had escaped and that my Aunt ran after her. I will paste his account here (taken from his facebook update) to give you a more accurate synopsis of the morning’s events:

“More excitement today—more for my wife than myself. Shortly after arriving today at my sisters's house she got "happy feet". She emerged from her bedroom purse over shoulder raring to go walking to the bank and supermarket. In a flash she was out the door with my wife chasing her. Although she came with no hat, she knew it would be necessary to have to walk to the store with Deana lest something dreadful happen in spite of the sweltering heat. Fortunately my wife had a bottle of water with her. My wife hung onto Deana's arm to keep from being left in the dust. Deana is tall and Tina is short.
At the bank it was a fiasco. The teller asked for ID and it was as if she had asked in German. My wife tipped off the teller and called my niece to let the teller know about what was happening. The teller was very helpful and said there was "no money" in the account. (There was.)
Then she was off to the market without any money. Her goal was to buy some sleeping pills. A big no-no! While searching for the brand she uses, she opened the bottles and broke the foil seals to be sure they were her favorite ones. Startled, my wife told her she couldn't open the product. Big mistake! Deana snapped back telling her to stop telling her what to do!!
When she found her pills, it was off to the checkout stand. Problem was, she did not have the money to pay! After standing in line at checkout, the line behind her grew and grew. Frustrated, she spied the small change box on the checkout counter where people make charity donations. "I can use that money people have thrown away!" My wife had to convince her she couldn't have it. Finally she left it all behind and walk out of the store.
I'm betting next time she gets happy feet, she won't let my wife tag along. I can wait for that!”

I’m afraid my mom has worn my dear Aunt out today! My Uncle also updated me that mom is now giving my Tia Tina the silent treatment (that’s mom’s way of letting us know she’s unhappy with you!) I’m sure my poor dad will get an earful (from mom) when he gets home as well. Just another fun day of dementia.

Tuesday, August 13, 2013

Happy Anniversary

Last night, as I was laying in my bed, I began to have a little anxiety about my post yesterday. I talked with my sister-in-law about it before I wrote it, and she was fine with me writing it. But I couldn’t help feeling like maybe I had over-shared. Maybe it’s because it was something so personal and that had affected me so deeply. My intention wasn’t to write for sympathy. I write, in part, because it is therapeutic for me. It helps me to sort out my feelings and to come to terms with certain things. All of these life experiences, and more importantly the way we respond to them, help to mold us into the people we are today. My experience with Wyatt was one such experience. Though it hurts to think about it, I don’t ever want to forget him. I don’t want to not talk about him. Maybe it seems irrelevant to this dementia blog, but it seems as though everything in my life goes back to dementia. It affects nearly every aspect of my life. That was partly the message I attempted to convey yesterday.

All that to say, I thought I should share something a little more upbeat today. Afterall, life is about finding the joy in the journey.

Last Friday was my and my hubby’s 10th wedding anniversary. One thing my mom is still great about is remembering the birthdays and anniversaries of her closest family members. She talks often about the cards she has collected from the Dollar Tree for so-n-so’s upcoming birthday and/or anniversary; she plans months in advance. She sets each card out days in advance anticipating the day that she is ready to mail them or hand them out.

I dropped by my mom’s house on Friday morning. Mom came out in her pajamas and of course made mention to me about how I had to see her as a Plain Jane. I immediately tried to redirect her and with a big, cheesy grin on my face, I turned to her and enthusiastically said,

“Mom, do you know what special day is today?”

She gave me a blank look and slowly shook her a head.

“Mom, think about what day it is today. Do you remember what is special about today?”

She turned around and walked over to her calendar hanging on the wall.

“I don’t know, today is Friday?”

“Yes, it’s Friday, August 9th. There are two special things about today,” I said, cluing her in.

After a few minutes of mumbling and squinting at her calendar, the light bulb finally went on.

“Oh yeah, it’s your anniversary and I have something to please let me give to you now please.”

I followed behind her as she quickly marched into the living room where she had my card sitting on a shelf.

“That’s right mom,” I said as I followed behind. “It’s 10 years today! And it’s also grandma’s birthday; your mom’s birthday. Remember?”

IMG887 I don’t think she heard me once she was on her mission to retrieve the card. But she was so excited to give me my card and I gave her a hug and thanked her. As I opened up the card, I couldn’t help but to grin. Inside, in her handwriting, she wrote,

“Cassandra & Jeff,

Love you

Good marriage

Bud & Deana

Cassandra’s Dad & Mom”

(Just in case we forgot who she was, he he). It does make me chuckle when I see her cards. They are so heartfelt and so innocent. I will hold onto this memory for years to come.

Monday, August 12, 2013

Good-bye’s The Saddest Word

A couple of weeks ago, I loaded up my minivan with my 3 youngest kids, and our luggage, and braved a 5 hour drive without my husband to Arizona. I was a little nervous to make the drive alone, without the assistance of another adult. But I wanted to spend some time with my sister-in-law and the kids. They make their way to California often, but most weekends they are here are filled from sunup to sundown with family activities. We wanted a little time to relax, sew and craft….and just to hang out.

Thank goodness for modern technology (particularly the DVD player in my van). I couldn’t have asked for an easier ride. The kids were set up with their favorite movies and for nearly 5 hours I was alone with my thoughts. I can’t remember the last time I’ve had that much time to myself to think. With the kids contentedly watching movies, headphones on for sound, I had no demands for Disney soundtracks or The Chipmunks. I had no teenagers taking over the radio with their blaring music. For once, I was free to listen to what I wanted to and I suppose without so many distractions, my mind was free to think on some things that I had pushed to the back.

After going through a couple of different playlists of some favorite pop and rock hits, I was in the mood for something a little more calm and soothing. Celine Dion was the obvious choice; she has always been one of my favorites. Something about her music just speaks to my soul. I hadn’t listened to her in quite some time. As I began my Celine playlist, my mind turned back to my last trip to Arizona. Oh how life has changed in the last 6 months. At a time when I thought life was looking pretty sad, I was shown that things could, in fact, get worse.

It was a Wednesday evening in early February. My husband and I had been planning a trip to Arizona to visit my twin brother, and his family, for that President’s Weekend. Natalie (my sister-in-law) was pregnant with their baby boy, Wyatt, and was getting close to labor. Natalie and I have a very close relationship; she has become one of my very best friends. She wanted me to be in the delivery room with her and I was thrilled with the opportunity; I wasn't going to miss it! That first weekend in February, she had been having a lot of contractions and was beginning to dilate. By Tuesday evening, I was sure she wasn’t going to be able to hold out until I arrived on Friday. So, with the help of some friends to watch my kids, my dad and I left on Wednesday evening in hopes that we’d make it for the delivery (my husband would meet up with us on Friday with the kids).

The drive out there was very enjoyable. It was really nice to spend the 5 hour drive with my dad, just the two of us. We talked about a lot of different things. He told stories and memories of his childhood. We talked about life, we talked about mom. I look back on that drive with fondness.

Once in Arizona, Natalie’s contractions continued but were inconsistent. We spent the next few days hanging out, shopping, walking…we were anxious for baby Wyatt to make his appearance while we were there. My dad stayed through Saturday afternoon before he made his trek back home. My husband and kids arrived on Friday and we spent Saturday visiting a Ghost Town . While there, my daughter was hugging Aunt Natalie and giggling as Wyatt kicked her from inside. Later that evening, we relaxed with a movie on their living room couch. Natalie commented to me that she hadn’t felt Wyatt move in a while, which was unusual for her active baby. I told her drink some juice. Still no movement. She went as far as drinking soda and still wasn’t feeling any movement. After about 45 minutes, we decided to go in and get checked-just to be safe. Joe and Jeff stayed home with the kids while I went with her to Labor & Delivery.

I didn’t think too much of it. If anything, I was even a little bit excited because I figured he was just preparing for labor and that was why he wasn’t moving around so much. The odd part, however, was that her contractions had stopped. As we drove over, I reassured her that everything was probably fine, but it’s always better to be safe than sorry and get it all checked out.

Right away, as she checked in, they took her behind the counter to a small area that had a doppler device which was used to check baby’s heartbeat. It was a small space, so they told me I could have a seat in the waiting area. I sat in the chair across from a family who was overjoyed with excitement at the arrival of their own family baby that was being delivered that evening. I turned my ears toward the nurse and I heard her moving around the doppler on Natalie’s belly in search of Wyatt’s heartbeat.

My heart sank. I’ve been through 3 pregnancies and am well-versed on the sound of baby’s heartbeat. I was not hearing that sound. I glanced over to the counter, concern starting to overtake me. I saw the nurse stand up and walk out and soon after Natalie followed behind her, tears streaming down her face.

And then I knew.

“They can’t find his heartbeat,” Natalie said.

We followed the nurse to a bed, where they immediately did an ultrasound. The nurse looked concerned but didn’t say a lot. She met my eyes with sadness and confirmed what I already knew. She called the doctor to come down and I left the room to make the hardest phone call of my life. I had to call my brother.

The next 24 hours were the hardest of my life (I’m sure it was nothing compared to the pain Natalie and Joe felt). I won’t go into detail, as it was a very personal experience for all of us. But I stayed by Natalie’s side, along with my brother and her sister (who, thankfully, was already flying in that night in hopes to be there for the  anticipated delivery as well) and she prepared to deliver her baby boy, still. It was devastating and heartbreaking, to say the very least. There are no words to describe the emotions and pain we all went through during that time. At one point (before delivery), I had to leave the room. While outside the door, I fell down to my knees and began sobbing uncontrollably. It was hard to catch my breath and I felt like my heart was surely going to rip out of my chest from the utter pain and grief I felt. I didn’t know how I could possibly stay in there through the delivery. Horrible images flooded my mind. I remained laying on the floor, crying and trying hard to breathe as the nurses tried to give me comfort. Suddenly, I felt a hand rubbing my back. I heard a familiar voice ask me,

“Are you okay?”

I looked up and peered into my brother’s eyes. In that moment, I knew I needed to hold it together. For my brother, for my sister-in-law and for my family. I eventually calmed myself down and returned to the room. I was able to hold my sweet baby nephew in my arms; to look into his beautiful, perfect face. I kissed his head and cried about the cruelty of the situation.

In the week that followed, Joe and Natalie came out to California, where we arranged for Wyatt to be buried with our grandparents. With my dad and my dear Aunt Peggy by my side, I dressed Wyatt in preparation for his burial in the clothes that Natalie had selected.  

I thought losing my grandma was hard. And it was. I also helped to dress my grandma and do her make-up (per her request before she passed) for her burial. Up until this point, that was the hardest thing I ever had to do. I suppose that experience helped to give me the strength for what I needed to do for Wyatt (and Natalie & Joe). But one of the hardest parts of this whole experience was not having my mom by my side. In fact, it was hard for all of us. Mom has always been there to help us get through these difficult times in life. Even with grandma, though her dementia had already begun, mom was able to at least understand what was going on and she was by my side as we prepared grandma. This time, mom hardly understood what was going on. She wasn’t there to hold our hand or to hug us or give words of comfort. She wasn’t there to cry on or lean on. It was another painful reminder of another painful loss.

As these memories were playing through my mind on that drive, tears began rolling my cheeks. I dabbed at the tears with a napkin, trying to hold the flood back when Celine Dion’s “Good-bye’s The Saddest Word” came up on my playlist. That’s when I completely lost it. Thankfully I had oversized sunglasses covering half my face, so the cars passing by couldn’t see the dam that had broken loose on my face.

The song is about a mother who has shown love to her daughter, raising her from a baby into the woman she is today. It goes on to talk about how it will be the hardest thing in the world to have to someday say good-bye to her mother. It ends with a promise to her mother that she will be there for her, as that day grows close that her mother can no longer care for herself.

I thought about my mom. I reflected on the love and the comfort she has given me over the years. Sometimes I feel lost without it, though I am slowly learning how to get by. Listening to these words was another reminder to me that I need to be there for my mom. Sometimes I think she would never even know the difference; sometimes she even resents me for “being there”. But the mom I once knew would be grateful for us taking care of her.

“And when you need me
I'll be there for you always
I'll be there your whole life through
I'll be there this I promise you, Mamma"

Mamma, I'll be
I'll be your beacon through the darkest nights
I'll be the wings that guide your broken flight
I'll be your shelter through the raging storm
And I will love you 'till forever comes.”

I should’ve stopped listening to Celine after the Good-bye song. But what can I say, I’m a glutton. A few songs later, I had finally gotten myself composed and then this song came on. I was in tears all over again. I hadn’t heard it in years, but the words seemed so appropriate for what I was thinking and feeling. I dedicate this song to my beautiful angel, Wyatt.