The Leash

Have you ever been out in public and seen the moms with leashes on their kids? Are you one of those moms? I am. The idea of leashing children seems to spark controversy among some people. Before I was a mom, I was indifferent on the subject.

When my daughter was 2 years old, we were shopping at Target and she was adamant that she didn't want to sit in the cart. After several minutes of thrashing around, we finally compromised that she could get out of the cart as long as she was holding on. She was doing really well, until we started walking through the children's clothing section and she suddenly saw something that caught her attention. All it took was one second for her to let go of the cart (mind you I was right next to her and watching the entire time) and she was off running through the maze of clothing racks. I was pregnant at the time, and not as quick on my feet as I should've been; I circled around the rack to grab her and panicked when she wasn't there. I began calling her name and frantically weaving in and out of the compacted racks as my heart raced in my search for her. Finally, after about 45 seconds which seemed like much longer, a woman raised her arms and called to me that she was "over here".

Guess what my husband and I bought the next week? Judge all you want, but I will not take the chance of losing my child and the fight to keep them in the cart can make any shopping experience unbearable.

I thought about this idea of "the leash" as I took my mom to Wal-mart yesterday. It started out as any ordinary shopping trip with mom. As I was pulling into the parking lot, she reminisced about a parent of one of her students when she was a "teacher thing" who used to work at this Wal-mart. That should have been my red flag right there. We pulled into a parking spot, and as usual, I barely had time to put the car into park and mom had her seatbelt off, got out of the car and began power walking to the store. She was across the street and to the entrance of the store before I could even get my 2 boys out of the car. I quickly got the boys out of the car and made a mad dash to follow her before she could begin her shopping.

Shopping went as expected. She had a hard time finding the make-up that she wanted. Luckily, she brought the empty bottle of lipstick and half used pallette of eyeshadow with her, so it was easy enough to find it for her. When we got to the cleaner aisle, she became frustrated with me when I put Comet in her cart, even though my dad explained to her before we left that he wanted Comet versus the cleanser she's been buying, as it works better. It made no difference how many times I tried re-explaining it to her, she was not processing what I told her. I had to compromise; she could buy the other brand cleaner, but the Comet was to be bought for dad. After some resistance, and a distraction with Lysol, she finally gave in.

Things seemed to be going relatively well, we had made it through shopping without any incidences. And then we went down our final aisle. As I helped her find her "delicious" turkey lunchmeat, I told her it was now time to go check out at the register. A vendor was blocking the end of the aisle with large crates and he was unloading goods onto the shelves. I told him that I needed to get by and he graciously moved the crates out of my way. I glanced behind my shoulder just in time to see my mom at the opposite end of the aisle, turning the corner away from me. I quickly apologized to the man and turned my cart around, racing after her.

I found her in the layaway section. There was a younger, hispanic woman sitting in a chair at the counter, and an older, caucasion woman standing next to her, talking. I came up behind mom, who was staring at the hispanic woman, just in time to hear her mumbling,

"Is it you? No I don't think so..."

The two women looked at her with a very confused expression on their faces.

"Can we help you with something?" the older woman asked.

"I was looking for the one who starts with an 'm'", mom replied back. "Her name is the one that starts with an 'm' but I can't remember her name."

I put my arms around mom's shoulders and tried to redirect her.

"I don't think she works here anymore mom," I said, trying to turn her around. I glanced back at the two women who had a look of confusion and the hispanic woman almost had a look of disgust or annoyance on her face.

I quietly told them, "sorry, she has dementia," to which the older woman gave a kind smile. The hispanic woman still looked confused. Mom turned back around, looked at the women, and said,

"It's just so sad because I can't go visit her at her house anymore since they cancelled me as a driver."

The older woman gave a sympathetic look and I directed mom away and towards the cash register. I should've given them an "oops" card.

I'm not so sure about a leash for a grown woman, but I do think it's time to make her wear the ID bracelet that we bought for her at the LA County Fair this year. It's hard to get to this point and have to treat her as a child; I am sure there is some of reluctance with my dad to put the bracelet on her. She will resist, she will feel as though we are "picking" on her; it's difficult to have to take away independence from someone you love. Yet I feel like it's getting to the point where it is becoming necessary to take these precautions.

A Foreign Language

My last post was about finding humor in the face of this ugly disease (if you missed that post, you can read it here). So here is some humor to start off your Monday morning.

Last night, we had our usual Sunday family dinner. My mom was talking about something (I can't even remember now what it was) and my sister was trying to respond and have a conversation with my mom. However, no sooner than my sister opened her mouth, my mom was talking about the next thing that was on her mind. She takes no time to listen to responses or engage in actual conversation. I think most of the time she simply cannot process what we are saying and can only focus on what she is thinking about. My sister turned to me and rolled her eyes, stating,

"I may as well not even talk, it makes no difference."

I answered her back, "We could probably speak another language and she'd know no difference."

Then, an idea popped into my head. I thought it might be funny to test my theory. As soon as mentioned it to my sister, she began chuckling. It took me a minute to hide the smirk on my face, and then I turned to my mom and, with as straight a face I could muster, I began reciting the Pledge of Allegiance. In Spanish.

Mom looked at me, at first with her usual blank look. In a quick moment the blank look turned to confusion, then she narrowed her eyes and got a smirk on her face and finally said,

"What, are you talking to me in Mexican?"

We all began laughing at that point, even Mom. I think she was proud of herself for figuring it out, and we were impressed as well. Immediately the conversation turned to my Aunt (who is a native of Mexico),

"And Tina speaks that kind of Mexican too cuz she's from that place too and even though she's getting really older too in her sixties she still looks really pretty and nice too..." and on and on mom went, reminiscing about Tia Tina's first time in an earthquake after she had moved in with them (while my Uncle was in the military) and so on.

Some of you might think we're mean to joke around; those who have dealt with this sort of circumstance (and who know our family) know that a sense of humor is essential. Sometimes that is all that gets us through the day!

Laughter is the Best Medicine

Watching a loved one suffer from dementia is devastating. It's not just about losing memory; it's about losing knowledge of everything they know-behavior, language, how to care for oneself, etc. Some days, dealing with dementia can be downright depressing. Sometimes I wonder how we're going to get through the sorrow as my mom's disease progresses.

My dad has always taught us to laugh. And he's always been a big tease. He always told us, "Don't take yourself too seriously."

In Susan's book (if you haven't heard about or read this book as a caregiver, click here, it's a must read!) she talks a lot about using humor to cope. I very much admire her positivity and her strategies in finding joy in the moment and looking for the humor in the situation. It's what gets you through with your sanity intact.

We have had to adopt that mentality somewhat with mom's illness. If we dwell on every crazy or embarassing behavior or every off-the-wall thing she says, it could put us into a full blown depression, because it's just so out of character for her and is very telling about the severity of her disease. We have had to learn to laugh at a lot of things.

Like when she occasionally "exercises". If she does the treadmill or takes long walks, she gets too sweaty. I know, that's the point of exercise. Try telling my mom that. She can't handle the sweat and it's "not good" for her. So, to keep active, she sits on the couch as she raises her ankles up and down, side to side, in a dancing motion. She usually does this while listening to Oldies on the satellite. Sometimes she will get up and stand on the circle rug in the middle of the living room and sway her hips side to side while walking around the outline of the rug, 'dancing'. The first time my sister and I saw her performing her exercises, we almost busted a gut laughing. Not to make fun of her; but it's quite amusing to watch. In fact, lately she has been feeling "more severe" and has not been doing her exercising; I actually miss it. I bet my 1 year old does too, as she'd sometimes grab his hands and try to dance with him ;)

When we are out at a restaurant (of course it has to be Miguel's or Outback), mom gets so happy when her food comes that she starts singing "yummy yummy yummy in my tummy tummy tummy." We just have to laugh at mom's childlike giddiness when she's happy. She has passed on this legacy to our kids and they will occasionally sing the song too; we always chuckle when they do.

Mom has no filter, so there's no telling what will come out of her mouth. She will tell you random things about her body parts and bodily functions, things from the past that you could've lived without knowing, random tidbits about her intimacy, secrets that she forgot were secret...whatever is on her mind. It can be downright embarassing at times, but we usually just have to laugh at the over-abundance of information that she shares. I could tell you some pretty funny stories in this department, but I think some might be a little too personal to share.

I know this may sound odd-to laugh at a time like this-but it is what keeps some sort of sanity in our lives. Whenever I think of dementia, my mind likens it to raising babies and children. I've said it over and over, but essentially that is what dementia looks like: a person growing backwards from adolesence to childhood to toddlerhood to infacy. My children say some pretty off-the-wall things and do things that constantly make me laugh. Just last week my son created a harness that he wrapped around his waist, hooked to the fridge and began scaling the fridge. It was a hilarious sight to see. Of course, after getting a picture, I had to teach him about safety and suggest that repelling off the fridge might not be such a great idea. If an adult did this sort of thing, we'd think it's crazy. But if it is a child, we think it's funny. That's how I look at it with dementia. Though my mom's behavior and escapades may be crazy for an adult woman to say or do, I am learning to look at her as a child and find the humor in the innocence of what she is saying/doing. I'm not saying everything is funny. But to get through this devastating illness, we have to find the funny and have a sense of humor!

What a Difference a Day Makes

My grandfather (my mom's stepdad) was a farmer. He owned acres of land covered with the most gorgeous orange groves and citrus trees you've ever seen. And if you thought they looked magnificent, the taste was even more magnificent. Now that he, and his groves, are gone, eating fruit just isn't the same. His oranges were the sweetest and juciest you've ever tasted. His pomegranates were always my favorite-not my mom's favorite, however, because of the stain the juice would leave behind on our clothes.

Grandpa had the most beautiful avocadoes you've ever laid your eyes on. Truly, they were amazing. In my family, we LOVE avocadoes and there was no comparison of who had the best avocadoes around. When you go to the store, you walk out with those sissy-la-la avocadoes, the size of your palm. Grandpa would bring home avocadoes the size of grapefruits and they were more delicious than any I've ever bought.

Because of the abundance of avocadoes, my grandma had to be creative to use them all up; grandma didn't waste a thing. Not a thing. We grew up eating a lot of guacamole, avocadoes on our sandwiches and tacos...when there was still an abundance after that, grandma created a recipe called "Avocado Cream Pie". It might not sound that appealing, but it won a ribbon at the fair and she had her picture taken for the paper.

The point of my avocado reminiscings: our family is well versed in, and very familiar with, avocadoes.

Last Wednesday night, my dad came over to my house. He had a somber expression as he walked through the door and right away I could sense that he was feeling a little down about something. I asked him what was going on. He scrunched his nose, glanced down at the ground, and then looked me square in the eye and said,

"What does mom always like to put on her turkey sandwich?"

I brainstormed some ideas with him: cheese, mayo, tomato, her sub sandwich oil.

He looked at me and said,

"Yeah, but what is the one thing that she always loves to put on her turkey sandwiches...always...think about it, something green...?"

And then it dawned on me, "Avocado."

He gave a little frown and said,

"I made her a turkey sandwich tonight, put on some avocado for her and she didn't know what it was. She kept saying 'what is this stuff, I don't want this' and took it off. I tried explaining to her that it was avocado, the same stuff she put on her tacos last night, but she didn't get it."

That was puzzling to me. "Are you telling me that she ate avocado on her tacos last night and she didn't know what it was tonight?" I asked my dad.

"Yep."

We conversed a little more about the issue. Even after an explanation of avocadoes, mom still could not comprehend what they were. It's confusing to me that she would know, and enjoy, something one night and not know what it is the next. As I pondered about this, a thought came to me that perhaps she hasn't completely lost her knowledge of an avocado; if it was presented to her on a taco, she might still remember what it is. But her association of an avocado in any other form is gone. She cannot comprehend that avocadoes go on sandwiches because in her mind, their purpose is solely for tacos. I suppose I will have to test this theory out the next time we have tacos (which should be fairly soon...it is one of her staple foods).

As I reflect back over the past few months, I see how rapidly her comprehension is declining. At times her lack of knowledge about certain things seems very sudden, such as with the avocado. It's a little scary and disconcerting. If she can forget an avocado from one day to the next, will it be that sudden with her forgetting us?

Sharing the Journey: Is it Positive or is it Exploitation?

Yesterday, a link was shared on a dementia support facebook page which I belong to. I followed the link and read an article written by a woman about her mother's struggle with dementia. It was beautifully written and depicted some of the challenges and heartaches she's faced as her mother's caregiver.

I scrolled down to read comments by other readers, most of whom agreed with the beauty of her writing as they shared some of their own struggles in dealing with this heartbreaking disease. One critic, however, had a different opinion after reading her article. He wrote,

"The writing was excellent but I was left with this horrible feeling of having invaded your mother's privacy. It's as if you allowed all these strangers to peer into your mother's most vulnerable, private moments. And to what end? To explain how you coped? Everyone copes in their own way...I know it's completely your decision to expose your mother in this way. But I wonder what she would think of this."

This comment really bothered me and I thought about it all throughout the day. I suppose it's because I, too, have opened up in sharing our moments with my mother. It caused me to sit back and ponder, am I invading her most vulnerable, private moments? And "to what end" am I doing this? Am I wrong for opening up about this?

I thought about it, long and hard. There is a part of me that wonders if I should be so candid and public about the journey are enduring. I tend to be a self-doubter, so I admit I felt a little guilt and doubt about what I am doing. As I continued to think (and maybe even fret a little bit) about it, several thoughts came to my mind to reassure me that this is what I should be doing.

As this critic commented that strangers are viewing her mother's most private, vulnerable moments, I realized that I am not sharing every moment at all. What I share is really only the surface. There are far more behaviors and things that she does/says that I could write about, but I am using my discretion in what I post simply because some things are embarasssing to bring up. Truly, I am not writing about the craziness of my mom; I am writing about the alien that has taken over her body, the alien known as dementia.

I have only the best of intentions with this. That is what I want my readers to understand most of all. I am not writing about this for any personal gain. I am not writing about this to exploit my mom in any way. In many ways, this isn't even my mom that I am writing about. This is about a disease that has overtaken my mom. While yes, I write about her behaviors and her struggles, what people need to understand is that this is not my mom, at least not the "Deana" we all once knew and loved. While she might be embarassed if in her normal frame of mind over the things that have transpired, she is not in her normal frame of mind any longer and she has no control over herself. She is no longer accountable for her actions.

THAT is what I am trying to teach people in sharing this journey. I want people to understand what this disease does. How many times do we encounter someone who is a bit "cooky" and do not know what to think or how to react? I want people to gain an understanding and empathy to those they encounter who suffer from this disease. I want to offer a place of support for those who are going through the same thing. And only they can understand what I mean by that; it's a difficult thing to go through and for most of us, it helps to read and share with others who are going through the same thing.

Knowledge is power. We cannot learn if we do not share. If writing about this journey can help anyone at all in their own personal journey, then it is worth it to me to write. My mom is an educated woman, she has always enjoyed sharing her knowledge with others. I do feel that she would be proud, and not ashamed, of what I am doing. Maybe I'm off base here, but these are the thoughts that continue to come to me when I find myself contemplating the things I write.

The Simple Joys

Have you ever gone over to visit someone and been greeted by their small child, who is so excited to see you and has been long anticipating your arrival? They want to show you all their new toys and tell you everything that has happened to them in their lifetime. Kinda cute at first...then maybe after a while, after you've seen and heard about every stuffed animal and every detail of their day, you're ready to move on with your visit.

I've said it before. People with dementia become very childlike; my mom being no exception. She becomes giddy like a child when she's excited and has an innocence about her when she speaks, like a child who doesn't know any better.

Lately, she has been extremely chatty. She talks a mile a minute. If I'm being brutally honest, it's enough to drive you a little nutty (bless her heart). In the moments when my ears feel like they are going to burst from over-stimulation, I remind myself what a good thing it is that she is still talking. There will come a day when she will not be able to find words any longer. So for today, I count my blessings.

Tonight I took some crickets over to feed my dad's newts; I was out and about today and picked some up for own newts, so I figured I may as well save him a trip. My mom answered the door and before I could even get all the way in the door, she was telling me all about her exhilirating trip to Sam's Club.

"Oh you know what's so good too is that I went to Sam's Club today too and got a lot of food stuff too. Claudia came and we went to Sam's Club so I got a lot of food and the food things the children like too..."

She led me staightway into the kitchen to show me her loot.

"I got a lot of really good things too, and I got those things your son loves, Cody loves, so much too and these other things too that all the grandchildren love too, " she said, as she pointed to the fruity snacks and goldfish crackers.

Without taking much of a breath, she walked over to the counter, where she had a bag of dinner rolls set out.

"And I got those really good bread things too and other bread stuff too. Oh, and I got the chicken nugget things that I love so much cuz they're so good."

She walked briskly over to the freezer and opened the door to show me it's contents. With excitement in her voice, she continued,

"See, these chicken nuggets, these kind, they're so good too. I like them so much," she said, pointing to the dinosaur chicken nuggets in the freezer. Next, she opened the refrigerator,

"I got those tomato kinds too which are really good and really healthy too and other things too. And I got lots of my Ensure too, a big box of it for really cheap, a really good price," she said, nodding her head as she moved back towards the counter.

"It's really a lot and that's good because I'm going to give some to Jeremy too for his birthday because he really loves it so much, but I'll go get more cuz his birthday is at the end of the month and then it's really fresh and new but I'm not gonna give him a big box, no. I'm just gonna give him some, like 6 of them cuz that'll be enough for him, he really likes them so much."

On a side note: Jeremy is my nephew; he's turning 9 this month and my mom approached me a couple of months ago with a brilliant idea for his birthday present: Ensure, because "he really likes it so much and he's always asking me 'grandma can I have one?' and his mom won't ever buy him any."

After she showed me all of her goods, she stood in the middle of the kitchen. Her arms were straight down in front of her, crossed straight over each other with her hands twisted around and held together, fingers overlocking. She swayed a little, side to side, as she proudly told me,

"I did really good too because I got all this really lot of food for only one-hundred-and-nineteen-dollars, about. And your dad didn't want me spending more than $150 so I did only one-hundred-nineteen so that wasn't as much, so that was good. And I got 14 things or maybe more for only that price so I did really good too. Yeah."

She smiled and I told her she did good and that I was happy she got to go to Sam's Club. After I fed the newts, and talked with my mom for a couple more minutes (about Sam's Club, of course), she grabbed a packet of fruity snacks and handed them to me.

"I wanted to give this gift to Cody too, even though he's probably asleep but I want to give him a gift of this because he likes it so much and he'll be so happy."

I know this may sound silly, but as I stood there, looking at the true joy in my mom's face at sending home those fruity snacks for my son, I felt a little warmth in my heart. I could see that she felt pride and happiness that she was able to give him something that she knows he really enjoys. Cody will be thrilled to wake up tomorrow to find his gift from grandma; just as thrilled as grandma was to give him the gift.

It is hard to see someone you love revert back to a childlike state. Sometimes it leaves me with sadness. Yet sometimes, if I look hard enough, I find something to smile about. I can smile that my mom is innocent and that simple things (like shopping at Sam's Club and giving my son his favorite snacks) make her happy. When I look back on what this devastating disease has done to my beloved mother, these are the moments and the memories that I will choose to remember.

Labor What??

"Oh, Jeff is home; why is Jeff home today and not working today?"

Yesterday was Labor Day. My parents came over late afternoon for our usual Labor Day barbeque. It was about 4:45 when they arrived; on a regular day, my husband doesn't usually get home from work until 5:30 and she very quickly noticed that he was home before his normal time (I think it's easy for her to remember what time he gets home as it is the same time as her dinnertime).

"Mom, today is Labor Day, remember??"

As I tried to remind my mom about the holiday that lands every first-weekend-of-September, my mom stared intently at the food she placed on the counter and quickly changed the subject, asking about the salad I made, and if it had "tomatoes in it too".

Oddly enough, I had just read a post in my online support group that morning, talking about the very issue of a loved one (with dementia) forgetting what holidays and birthdays are.

So far, my mom has an excellent memory of birthdays and anniversaries. Every so often she goes to the Dollar Tree to stock up on birthday and anniversary cards for the upcoming months, because "they are such a good price, only a dollar!" She will fill them out and place them by her bedside a month before the occassion, every day reminding herself and others that so-n-so's birthday is on such-n-such date and "I even have a card to send her too." She loves to serenade us with song for our special days. Her favorite, which she recently admitted to me that she sings in her head at bedtime, is the Anniversary song (to the tune "William Tell Overture" by Rossini):

"Happy Anniversary,
Happy Anniversary,
Happy Anniversary,
Haaaaaaa-ppy Anniversary!
Happy Happy Happy Happy Happy Anniversary....." (and on, and on, and on...)

Holidays are another issue. She remembers the big ones: Christmas, Thanksgiving, Easter. I've noticed that she doesn't seem to remember the smaller holidays, such as Memorial Day or Labor Day. I remember this past Valentine's day...she was completely confused as to why my dad brought her flowers,

"Our anniversary isn't until February 28th."

Even with an explanation, she couldn't seem to recall what Valentine's Day is. Little by little, she is forgetting the meanings of these significant days.

With the holiday season drawing near, I feel a little bit of despair. Everything is changing, and it's changing fast. Last Christmas was so much different than the year before. What will this Christmas bring? Is this going to be the last year that she remembers what we are celebrating?

I know that time is precious. None of us know how much time we have. I am realizing now, more than ever before in my life, how important it is to make the most of the time we have. I feel an urgency to make this holiday season spectacular, and to make as many memories as possible.