Remembering Deana: Part III

This post was written by my Uncle Jeff, my mom's brother.

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Deana and I were the closest in age of 5 children at 2 years apart. Our birthdays were a week apart with Deana’s following mine. Mom many times would make us one cake for both birthdays so compromise was always needed because Deana always wanted Chocolate cake and ice cream and I usually wanted Strawberry, Deana also hated coconut and I loved it. Mom would usually do half and half on the cake to satisfy our differences.

Since we were so close in age Deana and I did a lot together when we were younger. I can remember a time when Deana did not eat her vegetables and didn’t get dessert so I snuck her some of mine. As she crawled under the table to my chair I spoon fed her some of my dessert when no one was looking. I remember a time also when we went to Stater Brothers Market in Rubidoux Ca. I saw Deana chewing some Bazooka gum and wondering where she got it from she admitted to me she took a piece from the supermarket bin and began chewing it. I felt the need to rat her out for “stealing” the gum and told dad. Dad made her go up front to pay for it. I followed Deana up to the register where she had to “confess” her sins. She simply went up front with her penny to pay for the gum and handed it to the checker and said “this is for some gum that I am already chewing”. Wow, here I thought she was going to have to confess she took the gum but I had been out witted!

I remember another Super Market story, this one happened at Michaels Market in Glen Avon where we grew up. We entered the produce section and we were blowing air out of straws over the avocadoes that in those days sat in saw dust, it was cool watching the saw dust scatter. Deana rather than only exhaling made an inhale and sucked saw dust into her throat. She started choking and dad immediately grabbed her and I think even flipped her upside down and reached into her throat with his finger and scooped out the saw dust. Whew dad saved my sister!

Last story for now but Deana and I were walking to a friend’s house that took us to primary, a weekly church activity function for children. I was into the ‘playing with matches’ stage of my life and liked flicking them off the match book with my finger and watch them flare up then extinguish as they flung through the air. We were behind the market near a canal and I was doing my flinging! Next thing I know a man stops his car and yells to Deana and me to “Help stamp out this fire”! I had not even noticed my match didn’t go out and started the field on fire behind us. Some quick stamping and a disaster had been averted and we finished our walk to our friend’s home for our ride! I do not know why the man didn’t interrogate me as to how the fire started but so glad I didn’t get busted any further.

Deana has an outstanding memory of many past events and even in her dementia she seems to recall events I barely remember or do not remember at all. It seems so odd to me how certain things remain and others vanish completely from memory. When Deana visited me in the summer of 2012 she didn’t even know what a scrabble game was and said she has never played ‘that game’ yet she use to play it all the time especially when camping at Heart Bar camp ground. I showed her how to play and at first she wanted to play turn after turn like a crossword puzzle and not let me have my turn until she finally got it and we actually took turns. Eventually however when words were getting harder to find she immediately abandoned the game and got up and left the table. I felt this was the very few moments where I had actually connected with her for a small period of time during her stay. I am grateful to have so many memories and will have to share more later!

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If you have a memoir you would like to write about my mom for my Friday features, please contact me.

Thanksgiving

Holidays have always been a big production in our family. Both my dad and my mom grew up in large families, with 4 and 5 siblings each. Our holidays were an entire family affair: aunts, uncles, cousins, grandparents...

And the food? The food was never anything less than amazing! I've said it before-my grandma was a magnificent cook, winning many awards for her recipes and cooking skills. She passed those skills onto her children, including my mom. When we got together for holidays, particularly Thanksgiving, it was a heavenly feast. My mom ruled the kitchen and every holiday feast was magnificent.

Since I've gotten married, we alternate years on where we spend Thanksgiving between my family and my husband's family. This year was our year to spend with my family. As I reflected about the upcoming holiday and particularly the changes this year with my mom, I realized just how long it's been since I've had a "normal" Thanksgiving with her. Last year, we were with my in-laws. The year before that, it was Thanksgiving at my house with my parents and my dad's side of the family. And even then, mom was already "changing". She made a couple of pies that year, but somehow she couldn't get them quite right and they weren't as tasty as they used to be. The year before that: in-laws. Year before that, my brother got married over Thanksgiving break in Florida and my parents flew out and spent the holiday with him. It's probably been a good 6 years since we've had a Thanksgiving with my family with my mom in her normal form.

Thanksgiving this year was bittersweet. Sweet because my brother and his family were coming in to celebrate with us, but bitter because of the changes with my mom. In the weeks prior to Thanksgiving, I had many anxieties and concerns regarding my mom. Would she remember what Thanksgiving is? Would she engage with the family, or would she throw a fit to stay at home? Would she be able to at least help in preparing any of the food?

Last year, my sister and dad reported that my mom was not interested in preparing food for Thanksgiving. In fact, my dad had made a joke that they were going to a restaurant instead of the usual feast (blasphemy in our family!) and as my dad pulled out the turkey to prep, mom said, "I thought we were going to a restaurant." Once she figured out that my dad and sister were making the usual Thanksgiving feast, mom was in the kitchen, peeking over their shoulders and telling them what they were doing wrong.

"My mom always taught me to do it this way," she said, over and over as my dad prepared the turkey, the potatoes, the vegetables, and instructing them on how to prepare the food properly.

I wondered if this would be the case again this year. As annoying as it was to have her hovering and correcting, at least she was aware and familiar with our traditional holiday foods.

Mom has not made any mention of the holidays this year. Even as we coordinated food assignments, I knew mom would not be involved. A few days before Thanksgiving, I asked her if she knew what holiday was coming up. After several promptings, she figured out that it was "that one holiday thing where you eat that certain food" (I can't remembered if she named it turkey or insinuated). At least she was associating the holiday with the feast!

Now to Thanksgiving day: my dad came over in the morning to get his turkey going on the BBQ, while I got my turkey prepped for the oven. He came back a little before 1:00, with my mom. Immediately, my mom marched upstairs to my room, purse still on her shoulder, because 1:00 is her naptime. She laid down on my bed, complaining that it was too light in my room, the kids were too noisy, my bed isn't as comfortable and she wishes my dad would have let her stay home to take her nap. I left her alone to her nap. By 2:30, she was downstairs to take her medicine, again complaining about how she didn't rest well due to the noise and light. She sat in the living room for a few minutes, having a one-sided conversation with my great-grandma. Once she was finished telling grandma about her ailments, she came to my computer, where she sat, playing games, the remainder of the afternoon while the rest of us prepared the food for our feast.

When it was time to eat, my mom took one look at the table and immediately began complaining,

"Where's the salad? Why isn't there salad? I don't like any of this stuff, I want my salad, darn it."

We explained to her that it was Thanksgiving and that these were the foods that she has always liked; her family's recipes. She insisted that she did not like those foods and that it would make her tummy sick to eat it. We tried to coax her to eat just a little turkey or just a little of this or that. She ended up with a tiny dessert plate with a scoop of mashed potatoes (which she only ate half of), a buttered roll (she only ate half) and a few vegetables from a veggie platter that she drowned in ranch dressing. Try as we might, we could not get her to eat any more than that.

She went back to her computer games until she grew tired and wanted to go home. I think we were able to get her to stay until around 7:00; when my Aunt was the first to leave, my mom literally chased her down (as my Aunt was taking her dishes to the car) to ask her to give her a ride home. By that time, my dad gave in to her wishes and took her home while he drove my great-grandma back to her home as well.

I had been looking forward very much to Thanksgiving this year. I love having my brother here and love getting together with the family. I had a good time visiting with everyone; yet I found myself, at the end of the day, feeling rather melancholy. I think part of that was exhaustion; I had spent nearly 2 entire days in the kitchen preparing all of the food-the homemade rolls, the turkey, the potatoes and vegetables, the pies. Not to mention all of the prep work and cleaning up that comes with cooking and hosting Thanksgiving. A big part of it was the empty feeling at the loss of having my mom there to participate in the cooking and festivities. Though I've hosted many holidays before, I've never NOT had my mom there in some way (if not physically then she was at least a phone call away). When it was time to make the gravy, for instance, we had to call my mom's sister to ask exactly how mom used to make it. Gravy was mom's specialty; no matter where were at for the holidays, mom was the master in the kitchen making the gravy. Now she doesn't even know what gravy is. Why didn't I think to learn from her when I had the chance?

Our family holiday dynamics are changing. They are changing rapidly. Judging by the progression from last year to this year, I daresay this could be the last holiday season that she is even remotely aware of what the holidays are. I am trying my best to make the best of it, to enjoy the little moments. But, as it seemed for Thanksgiving, those moments may already be gone.

Remembering Deana: Part II

This memoir was written by my Uncle Mike, who is my mom's oldest brother.

It’s really hard to write things about a little sister you hardly knew when she was my “little” sister. I left home to go to war only six years after my little sister was born and did not come back for almost seven years except for military leaves. During that time I met my wife, got married, and had already started a family by the time she had grown to be a teenager. I missed a lot by being the oldest of five children.
Even so, I was stationed somewhat close to home at my last military posting before I was discharged. Just a few weeks before I was to finish my Air Force duty, I came home and picked up my little brother, Jeff, and Deana to take them back with me to Arizona where I was at Luke Air Force Base, near Phoenix.

I’m sad to say that at first, things seemed a little awkward. It was like babysitting kids I only barely knew. Deana was still very young. Deana was only about 12 or 13 years old. She seemed very subdued, even though I knew she idolized her big brother in uniform who had sent her interesting and beautiful gifts from my travels in the Far East. I’m sure that wasn’t because she was timid being around me. If I had to think about it, I would have to say she missed living with her mother and father as a married couple. Sadly, mom and dad divorced while I was away, and Deana lived with my dad who seemed not to care much about the children he had to care for in absence of a mother. This would make any child sad. Hell, it made ME sad, and I was living with the love of my life and enjoying every minute of it!!

After a few days they started to have more fun as we swam almost every day in the pool at our apartment complex in the sizzling Arizona heat. We’re talking August, folks…Hot, hot August! Then we took a trip to the Grand Canyon and Deana still talks about it to this day. It seems odd to me that someone can have clear memories of times long gone by, but cannot remember her friends names from church, or who is the President of the United States.

Anyway, in absence of having decent guidance at home, I stayed close to my little brother and sister as much as I could while being a deputy sheriff in the neighboring county. I would drop in on their apartment my dad rented in La Sierra, and visit her at work when she worked at TG&Y stores. Once when we found out she was dating a non-LDS guy, my wife warned her that his “kind” have only one thing they are after—sex. Well, it didn’t take long for my wife to be proven a seer. Not that he tried anything with her, but he did it with someone else and she found out. She broke up with him and came to ask how my wife knew that would happen? She has been grateful ever since.
Then she told me sometime later she was dating a neighbor boy named Buddy Alves. I remember when I first saw him and wondered if my sister had even learned anything from the last guy. Next thing I know he is being baptized and my sister is marrying him. She had to get out from under a stressful and lonely home life living with my dad and his second wife. How could I blame her?

But, something was obvious; the two were madly in love, and even a hard-nosed cop like me could tell that. So, believe it or not, I began to drop by the newly-weds home as much as I could. That’s when I really got to know my sister, and as you might expect, her new husband who I grew to like quickly, long hair, beads, and all!! He was not afraid of hard work and I respected that a lot. I knew he would be good for her.
We camped and fished together often and always got together on holidays. My sister also added to the family income by selling crystal and had these “crystal” parties. I remember one time when she was trying to sell a group of ladies a crystal dove, or something like that. She said you could use the dove as a way to signal your husband that “tonight’s a good night for romance” by placing the dove upside down on the dresser. I about swallowed my tongue. That’s just stuff I never talk about openly, but both my brother and Deana would giggle at small gatherings joking about uhh, umm let’s just say their love times. Funny, now she has totally lost any brakes and will sometimes say things that will make you blush or cover your ears and yell “la,la,la,la!”

I think it wasn’t until her older years that we finally grew close and truly felt like a brother and sister should towards each other. Which makes it all the more difficult to accept that I am already losing the sister I once knew. I am so thankful that in the life that awaits us hereafter, we will be as close as any family can be thanks to the blessings of a merciful God, temple sealings, and the power of the Priesthood.

Oh Happy Day!!

About 6 years ago, my twin brother moved from California to Florida. I hate to sound over dramatic about it, but it was near devastating to me. My brother and I are close. I knew that no distance could break the bond we share, but I was sensible enough to realize that our family dynamic would be changing. Joe would be missing out on our family dinners, holidays and parties. My sister and I have remained close in proximity to my parents, and even though we have our differences, it is nice that we are closeby and that we can call on each other when we need something, and that our kids can grow up together. Being states apart from my brother, our children would not grow up close to one another. Simply put, things would not be the same with him living so far away.

Joe loves Florida. He loves the heat and he loves the adventure. In the time he's spent away, he met and married his wife, Natalie, and they welcomed their first baby girl, Adri, into their family (2 1/2 years ago). And baby #2 is on his way!! They have done a good job keeping in touch; thank goodness for modern day technology to help with that! They usually make 1-2 visits per year, and we've gone out there twice on family vacations to visit. Truly, we've done the best we can to remain close and make sure that our children are familiar with their cousins, Aunts and Uncles. In fact, despite the distance, Natalie has become one of my closest friends. We talk to each other often on the phone. But it still isn't the same as having them here.

I've tried several times to convince Joe and Natalie to move to California. My efforts were always in vain; Joe's life had been established in Florida and he was happy living there. Since my mom's diagnosis, I have really felt more empty without my twin brother here to share in those precious moments that we have left as a whole family.

In May, three months after mom's diagnosis, Joe and Natalie (and Adri, of course) made a trip out here to visit. I think part of that visit was an urgency Joe felt to come and visit mom. At that time, we still had so many questions unanswered about her timeline and whatnot, as we had not yet had our follow-up with UCLA. We had a great time together, but it was very short-lived. He was only able to make a short weekend trip and before we knew it, he was on his way back to Florida with no definite plans set on a return visit.

Before he left, we, as a family, had a deep conversation about life and about mom. We talked until 2:00 in the morning. There were some tears shed (by the women, anyway); of course I made my usual proposition for Joe to move back home (but this time with good reason!) He told me,

"It's not that easy to just pick up and leave. I have a job, a house...our whole life is in Florida."

I realized that he was right. It was a tough pill to swallow. But he's right; it's not that easy to just pick up and leave your whole way of life behind.

The next month, our family (husband and kids) flew out to Florida where we spent 2 entire weeks with Joe's family. We hung around his parts of Florida and met up with some friends, altogether, in the Bahamas. It was such a sweet thing to see Adri playing with her cousins. Every morning she would come waltzing down the hallway and poking her head into my bedroom, saying,

"Aunt Cis [Sis], wake up!"

It was a sweet and happy time for all of us to be together and to bond. When we left, we missed Joe's family terribly. They missed us just as much.

And then something happened. Something I never imagined ever would. Joe began looking for jobs back in the West. I didn't want to get my hopes up. It sounded way too good to be true. But I started imagining what it would be like to have him close again-to have him for dinners, parties, date nights. To have cousin sleep-overs and playing with one another. By September, it was official. He took a transfer at his job to Arizona, just a 5 hour drive from our home, while he continues the hiring process for another job, which could land him back in California (processing time for that job could take up to a year).

I was wondering what had caused this sudden change of heart, although deep down I knew. When someone close to you is diagnosed with a terminal illness, priorities begin to change. As part of his announcement, he wrote a blog, which really touched me (sorry if that embarasses you, Joe). He gave me permission to share some of what he wrote.

"In March my mom was diagnosed with a rare form of dementia. After her diagnosis, my sister was trying to convince me that this is reason enough for me to pack it up and come on back to SoCal. I of course wasn't having it. I had plans to stay here and didn't want to start over just to get there once my mom doesn't remember me. I'm not too optimistic that she will remember me in a year or two. There are a lot of things that I miss about SoCal but a lot of things I can't stand...

"Well in late June my sister's family came out to visit for a couple weeks. I got to see Adriana running around with her cousins having a good time and I actually got a break from her and got to be an adult for a while. Normally I'm either babysitting or entertaining the kid all day. We never get a break. With cousins around we got to let her go play and we could sit back and relax and have some time to ourselves for once. It was a nice break from our busy lives. Since then I just haven't really been the same. I've felt like even though there's so many good things going on in my life it's kinda empty sometimes. I've felt like I don't want to be here anymore. We have this nice house and a pool and it never gets used. It just seems kind of pointless..."

There comes a point in life where you realize what is most important. That's not to say that Joe's life in Florida wasn't important. He and Natalie had decent jobs, a beautiful home...but I think that he had re-priorized what is most important. It's not about the house or the things, it's about family. Our time with mom is limited. Really, our time with anyone is limited; we never know when our turn here on Earth is up. I know it was a sacrifice to make the move, especially for Natalie, who left behind some of her family in Florida. But I am glad that they chose to come home and make the most of the time we have left with mom, as well as make many happy memories between cousins and family.

Last week, my dad flew out to Florida, helped Joe load up the moving van and move cross-country. It took them 4 solid days to make the trek. Joe is now settling into his new place in Arizona and will be here for all of the holidays. I am so overflowed with joy that they have moved closer. I feel like our family is whole again...for the time being, anyway. I'm looking forward to a very memorable holiday season filled with family.

Maniac Monday

My husband and I just love to get away on date nights. I'm a stay-at-home...and I love my kids and my job. I also look forward to getting out at least a couple times a month with my hubby! When we go out, we have to make sure we have a babysitter for the kids. Aubrey is 7 (she is the oldest of the younger kids). Aubrey's a pretty smart girl. She knows how to take care of her basic needs: grooming, going to the bathroom, fixing simple meals, etc. She knows her address and how to call 911. But there are other concerns I would have in leaving her home alone. If there were a fire, or other medical emergency (if she cut herself with a knife while making a meal, for example), would she know what to do in her frantic state of mind? What if a stranger came to the door and tried to intrude? What about if she decided she wanted to go out for a walk by herself...would she be able to make it home safely?

These are the very dilemmas we are facing at this point with my mom. While, for the most part, she is able to meet her basic needs, there have been some safety issues that are of concern to us in leaving her home alone. In talking with other members of my online support group, my dad and I have concluded that we do not want to wait until the moment that disaster strikes to realize that she needs full-time supervision and care. We are in the process of obtaining Social Security benefits for her; in the meantime, it would be quite costly to bring in a full-or even part-time caregiver and aren't in the position to do that at this point. Until we are able to receive some sort of benefits or caregiving grants, we have family coming in a few times a week to help supervise mom while my dad is gone at work. Hopefully this arrangement will continue to work until we are able to obtain some funding to assist us in her care.

Mondays are my day to go in and "babysit" my mom. I've been doing this for a few months now, and mom is still resistant to my being there. There is usually the preemptive measures attempted by mom the night before (when I remind her I'll be over in the morning) to prevent me from coming,

"You don't need to come over, no. I'm okay, I'm fine. I don't know why you think you need to come over every time on Monday."

Followed by my attempted pacification,

"I know you're okay, mom. I just want to come visit you and help you out. I know you don't always feel good, so I thought I could help and keep you company. It must be lonely being by yourself everyday."

Despite her resistance, I always show up on her doorstep every Monday morning. I usually let myself in with my housekey.

Last Monday, after my boys continually rang the bell while I fidgeted with my keys, mom cracked open the door, peeked her head out, and said, with obvious disappointment and annoyance in her voice,

"Oh. It's you. I was hoping you weren't coming today."

I chuckled (I know better than to let it hurt my feelings) and let myself in. As usual, the house was dark and stuffy. Mom gets very hot and sweaty while blow drying her hair. She believes that only if she keeps all the doors and windows shut, and every light off, that her house will remain cool. Often times I find her sitting in her room in the dark, on the edge of her bed, arms folded across her chest and her posture slumped over as she stares down at the ground. I admit I feel somewhat of a shut-in when I am at her house. When I arrive, the first thing I do is open up the curtains in the living room-after leaving the front door open to air the place out. She usually goes back to her bedroom to finish getting ready-getting ready for what I don't exactly know. Ready for a day of sitting at home. She doesn't want to look like a "Plain Jane", even for herself. When she makes her way back into the living room, she immediately shuts the door and complains,

"I don't like it when you leave the door open. There's yucky stuff in the air that comes inside."

Sometimes she will swat at the "yucky stuff" in the air (which I only see to be normal lint that can only be seen in the light), followed with, "See? Ewe, no, yuck!"

Sometimes she will leave the blinds open; other times she will close them and complain that it makes the house too hot. The sun hits the opposite side of the house, and I don't notice the house getting any hotter with the blinds open. I usually open everything back up when she leaves back to the office to play games on the computer, only to repeat the process once again when she comes back out.

One of my Monday duties is to clean out the fridge. This has become a sore spot with my mom. She gets angry with me for throwing out rotted food.

"I don't like it when you come over and throw my good things away, it makes me mad when you do that!"

On a couple of occassions, she has dug the rotted food out of the trashcan, insistent that she is making it for dinner. I had to call my dad to forewarn him about the situation and let him deal with it when he got home. I feel bad to push it off on my dad; it's difficult for me to be in a confrontational situation with my mom. On one hand, I can empathize with how she must be feeling. It's hard to accept this role reversal, with me acting as her mother. And in her mind she is perfectly fine; she doesn't need me to come in, invade her space and throw away her things, even if it is rotted food. On the other hand, I simply cannot allow her to eat rotted food and risk her and my dad getting sick. I've learned to try and clean out the fridge while she is away playing her games or fixing her hair. But when she catches me, it isn't pretty.

Many times, we will run errands to the bank or grocery store on my Monday. Lately, I've been trying to get her to do more than play computer games all day. A couple weeks ago, I brought over one of her favorite games from the past. When I told her the game by name, she had no idea what I was talking about. When I coaxed her to come and sit down and see what I was talking about, she remembered how to play the game. In fact, with only one minor reminder of one of the game's rules, she was a great player. I only beat her by one turn.

By naptime, she is practically pushing me out the door. She wants to be alone in an abolutely quiet house. My youngest son is usually in the other room napping, and my 4 year old quietly watches a movie. I firmly, but gently, tell her that I will be sticking around for a while longer and use that time to clean up around the house and organize some of the chaos. We could literally not say a word the entire time she's napping, but she would still complain that it's not quiet enough. Eventually, she's going to have to adjust to having someone around 24/7. May as well help her adjust to that now.

By the time I get home, I feel a little overwhelmed as I look around my own home and see the mess that I didn't have time to clean before I left the house: the breakfast mess that is both on the floor as well as the table and in the sink, the toys that have been scattered about, shoes that were pulled out of the closet in a rushed effort to find each child their shoes, laundry piled up waiting to be thrown into the washer. I feel physically and emotionally drained. Not necessarily because my mom has worn me out. It's hard to put to words; the situation is just draining. It is very despairing to watch someone you love slowly slip away. Yet, as maniac as my Mondays are, I am grateful to be able to help and give back for all the many things my parents have done for me over the years. I would hope that if I found myself in this same situation someday, that my children would be there for me. I know that my mom is oblivious to what we are doing for her now, but I believe that someday, in the hereafter, she will know everything we've done for her. Someday, she will be whole again; she will be able to look back and see, through my actions, just how much I love her. That is my hope.

Remembering Deana: Part I

Today is the day that I begin sharing stories and memoirs about my mom, written from other people besides myself. I want my mom to be remembered for the beautiful person she was before the dementia.

This first post was written by my sister; my mom's 3rd child. Grab the tissues...I sure did!

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Remembering Deana: Part I, By Christina Alves-Avila

When I was a child, I remember telling my parents and grandparents that they were going to live forever so that I would never have to suffer the loss of anyone I love during my lifetime. Even as an adult, I would still carry on saying the same thing, even though I knew deep inside that, at some point in my life, I was eventually going to experience loss. Over the years, a few family members and acquaintances passed away, but nobody with whom I was very close. When my grandparents both passed away in 2010, when I was 25 years old, I experienced the first real loss in my life. It was shortly before that time that my mother started acting different, though we would not have a diagnosis for two more years.

Dementia has truly changed the person my mother was. My mother was fun, intelligent, giving, and devoted to her family and church. My mother held many positions (unpaid) in our church over the years and hardly ever missed church. She set a positive example for my siblings and me to follow.

When I was a child, I remember my mom attending the community college a couple of nights a week for a couple of years, maybe more, to get her Associate's Degree. My sister, brother, and I would stay home with my dad on these nights. I remember my mom doing her homework during the week. I still remember her walking in her graduation, though I was still fairly young. My mom demonstrated to me at a young age that education is important, and this is a belief I have carried with me throughout my life.

Something important to me that I will always remember is my parents’ love for one another. My sister, brother, and I used to get grossed out when my parents would “make-out” in front of us. My mom used to say, “At least you know your parents love each other!” And we did. I rarely saw my parents argue. They usually took it behind closed doors. A few times I caught on that they were at odds about something, and I would usually find a flower or something on my mom’s pillow the next day.

Something I will always remember about my mom is the way she would wake us up in the morning. She would come into our rooms singing in her opera voice, “Good morning! Time to get up!” Alternatively, she would often sing the song “Oh What a Beautiful Morning” (from the movie Oklahoma!). Occasionally, when we did not respond to her singing, she would come into our doorways with a water bottle and squirt us until we jumped out of bed, wet and angry. What a way to start the day!

I have fond memories of, as a child, sitting on my mom’s lap during church and falling asleep, and, as a teenager, lying on her lap while she played with my hair. There were the family vacations every summer that my parents would save up for all year long where we would build memories. These are the little things I took for granted as a child.

As a boy-crazy teenage girl, I put my mom through a lot of worry and many sleepless nights. There was no question in my mind that my mom cared about me because she was active in my life. When I did something wrong, I was given a consequence. I would get mad at her for “ruining my life”, but deep down inside, I knew I was lucky because many of my friends did not have parents who showed that kind of love and concern. In some ways, I was a bit of rebel, but I never snuck out my window, tried drugs or alcohol, or did a lot of other things that my friends did because I knew that my mom would find out.

My mom was at every event I participated in as a child. She was at the Spelling Bee that I won in 5th grade. She was also at the one in 7th grade, when I misspelled "eureka" and cried on her shoulder. From fifth grade through high school, she came to every choir concert. My ambition as a child and young woman was to become a singer/songwriter. When I turned eighteen, she took me to a convention in Los Angeles for aspiring artists and paid for the hotel room. It was at this age, in my young adulthood, that I began to identify with my mom as not just a mother, but as a friend.

When I got pregnant with my first child at the age of eighteen, unmarried and still living at home, I told my mom first. I knew my mom would be calmer than my dad and felt less-threatened by the thought of telling her first and letting her tell my dad. My mom suspected the pregnancy before I even told her about it – she must have had that maternal intuition. I told her, and she cried. She and my dad tried to talk me into adoption, without success. My mom went to childbirth preparation classes with me. She went to doctor’s appointments and ultrasounds with me, and, when my son was born, she took me to the hospital and stayed by my side. My mother was also in the hospital with me for the births of my other two children.

My mom helped me tremendously over the next several years. She babysat the kids often. Being a preschool teacher, she took an interest in helping the kids learn. She decorated my wedding cake and birthday cakes for my kids. She always gave me motherly advice – how to discipline, what to do when they get sick.

But her ability and willingness to help with the kids slowly diminished over the years. She became fatigued, irritable, and impatient. She has become more and more disinterested in the events of my life, perhaps partially due to her inability to understand everything going on around her. She no longer has advice to give. Though she is still physically here, I have suffered a loss – the loss of my mother and one of my closest friends.

My mom is young, and I am too young to lose her. Then I look at my friends who have their moms much sooner and realize that there is always someone who has it worse. I am grateful for the memories I have with my mom. Because my mom was involved, because we made so many memories when I was young, I have so much to hold on to and remember her by.

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President Who?

I grew up in a family who expressed their patriotism to our country. Both of my grandfathers served in the military, as well as several Aunts and Uncles. Part of being patriotic is exercising your right to vote. My parents set that example for us from the time we were small kids and expressed the importance of voting. I remember both mom and dad going to the polls on election day, and returning proudly wearing their "I Voted" stickers.

Today was the first time that I can ever remember that my mom has not participated in election day. She is not even aware that today IS election day. If you ask her who the President of the United States is, she will not have an answer for you. If you ask her who is running for President, she will not know. When shown pictures (at UCLA) of our President and pictures of some of the most famous past Presidents, mom did not recognize who they were.

This comes as somewhat of a surprise to some, seeing how one of the candidates for President is a Mormon. One of my mom's obsessive behaviors of dementia is an obsession with her religion. One would think that she would be aware that someone of her faith is running for President. But mom is completely oblivious to it all.

Mom has missed all of the media propaganda surrounding the election. She does not watch TV. She cannot comprehend what is on the screen, so she doesn't watch. The only time she gets on the internet is to check her email; even then, she has a difficult time sorting out junk from personal emails. In fact, I'm not even certain how often she checks her email these days. Needless to say, she hasn't been reading up on politics via internet. Nor does she read the newspaper or magazines anymore. She doesn't answer most phone calls, and when she does, she is very confused and cannot comprehend most of what people are saying to her over the phone. She does not engage in most conversations that we have when together as a family/group or one-on-one. She can only talk about what is on her mind. She cannot comprehend most of what we say.

It is not surprising, then, that she is oblivous to what is going on in the world around her. The only world she lives in is her own, which is being ruled by dementia. She is rapidly losing her knowledge and awareness of everything around her.

Dementia is a beast.

Blog Project

I love my mom. I loved her before the dementia, and I love her with the dementia.

I am a little ashamed to admit this, but over the past few years, I have been struggling to bond with my mom. In many ways, I feel detached. This is a consequence of the disease; people with FTD lose many emotions and apathy. Relationships often become strained with this disease. I suppose it's not anyone's fault, it just is.

Lately, I find myself thinking about my mom; thinking about the "old" mom. The mom whose bed I used to lay on at night and talk with until my dad kicked me out of the room. ;) The mom who was always there to help me solve a problem or give me advice. The mom who shared in my joys, and my sorrows. The mom who loved to sing and dance while doing chores around the house. The mom who loved to bake, especially around the holidays. The mom who taught me how to be a mom.

I miss my mom. But I am fortunate to have many memories, which I will forever hold dear.

Sometimes, I look at my mom and I think "Who is this person?" The dementia has taken over, and the person she once was is becoming more and more of a distant memory.

Today, I came across a blog written by a daughter about her mother, who is also suffering from a form of FTD (known as PPA-primary progressive aphasia). In her blog, she shared stories written by others about her mom. They were a loving and sweet depiction of who her mother is, who she was before this horrible disease started to take over.

I felt inspired as I read this woman's blog. I write about my mom as she is now, with the disease that has invaded her being. I do this to educate about dementia. I do this to share with family members and friends what is going on with my mom, so that they might gain a better understanding and know what to expect when interacting with my mom. But I don't want my mom to be remembered for the alien being that she has become. I want my mom to be remembered for who she was.

I am beginning a new project on my blog. Every week, I would like to feature a post written by others who knew and loved my mom before the dementia. I would like to pay tribute for the wonderful wife, mother, Aunt, sister and friend that she was. Please contact me if you would like to participate in this project. You can email me a story, memory, thought, or anything remembered about my mom. If you have pictures, they would be a lovely touch; if not, your words will be enough.

I will feature a post every Friday-I'm hoping for a large response to this, so please be patient while you wait for yours to be featured :) For all those who knew my mom, please help me to honor my mom, for the wonderful person that she is.

Halloween

Happy Halloween!! I am posting this picture just for fun, and because my kids were ridiculously cute in their costumes this year. I managed to find time (barely) to make my and my daughter's Indian costumes. The boys had to settle for Amazon this year ;) The teenagers, of course, wanted to do their own thing. They are the "crazies" of our bunch!

Before dementia, my mom loved having all of the grandkids together to trick-or-treat on Halloween. There was almost no option to do it any other way; it was a big deal to see the kids in their costumes. Before we moved up the street from my parents, and lived about 20 minutes away, we would come to spend Halloween night trick-or-treating in my parent's neighborhood (along with my sister) so all of the cousins could be together and so that grandma could get pictures of her grandbabies. Mom also loved us to come along to their church ward's Halloween trunk-or-treat, usually held the night before Halloween. So we have always had at least 2 nights of festive fun and celebration altogether as a family.

We started a new tradition last year at our house on Halloween night. We decorate our garage and invite our friends and both sides of the family to come over, have some "spooky" food and take the kids trick-or-treating around the block. We have a great time. It can be chaotic with all the kids...just look at this group! But they are memories worth making and we have a great time together.

Like I said, we started this tradition last year. Last year was pre-diagnosis, but we knew mom wasn't quite right. We were frustrated and a little hurt when she refused to come over and celebrate Halloween with us. She was obsessed with staying home at her house and passing out candy to their trick-or-treaters. I think what she was mostly obsessed with was seeing her past Head Start student, who lives up the street and who she knew would trick-or-treat at her house. It did sting a little that she seemed to care more about seeing her past student than her grandkids. However, she did attend her ward's trunk-or-treat the night before and we went along with her to that. I suppose she figured she already saw the grandkids together and spent an evening with them.

This year, she did not participate in any Halloween festivities at all. I prepped her last month about Halloween...she didn't know what I was talking about. As Halloween got closer and we talked more and more about it, I think she figured out what the holiday was. But she would not come to the trunk-or-treat at the church and she would not come to my house. She did not pass out candy at her house either. As far as I know, she sat at home with her music on, playing her computer games until it was time to go to bed. She didn't see the grandkids in their costumes nor show any interest in them or the holiday at all; she was completely detached. Halloween was just another day in the world of Deana.

It is sad to see the decline and to see her uninvolved in the family traditions and activities that we once held dear. My guess is that by next year she won't even know what Halloween is. With Thanksgiving and Christmas approaching, I realize that the days she remembers these holidays is numbered.