Friday, December 21, 2012

Remembering Deana: Part V

Today's memoir of Deana comes from the daughter of her oldest brother, her niece Patricia.

I couldn't find a picture of the two of them together, but I found one of Patricia in her teenage years, which pertains to this post. Enjoy!

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My aunt Deana was like a second mother to me in my tormented, drama-filled teenaged years. For some reason, when I hit age 12, my parents were no longer cool anymore, and that’s where my aunt Deana came in. She is only 14 years older than I, and in my young teenage mind, she was cool, hip, pretty, and young. She used to talk to me all about her teenage years regarding boys, and to my boy-crazy mind, it was fun trading stories. She was still so young at heart, and it made all the difference in having a confidant to share things with. I used to spend most of my entire summer vacations at her house, and even some of the weekends, when I felt it was “getting too heated” at my own home. Or, sometimes, when my Aunt Deana wanted to go on a hot date with my Uncle Bud, she would come pick me up to babysit on a Friday night, and I would stay there the entire weekend. My aunt Deana always helped me re-ground myself amongst all the teenage drama, and I loved spending as much time with her as I could. It was a win-win situation for us both. Like most mothers, she was stressed out with raising her children, and needed help. I needed an escape from my drama-filled teenaged years at home. So, I would come help her babysit, clean house, and we would generally just be each other’s good friend and companion during those times.

Like Cassandra, I also remember her keeping an immaculate home. I always helped her every morning to sweep and mop the kitchen, clean the bathrooms, vacuum, and other household chores. What was fun during these times was when she would turn on MTV (back in the day when MTV actually had music videos) and we would rock out to Martika or some other crazy 80’s band while cleaning the house. She used to grab the mop from me and dance around with me in the kitchen. Oh, what fun that was! I remember one time when “Sweet Child O’ Mine” by Guns N’ Roses came on, she grabbed the mop, pretended it was her microphone, and sung at the top of her lungs. High-pitched Axl Rose voice, and all! She was so fun, full of life, and best of all, silly!

As Cassandra mentioned, her mom was a fabulous cook. She also helped me learn to make my own peach pie when I was 12 years old. Peach pie was a tradition in her family every summer, and after she taught me how to make it, I would come over every summer, and we would make them together. I will always love and cherish those times as we grew closer together in our relationship. Plus, making peach pie and rocking out to Guns N’ Roses on the TV………what is not to like and love about that? See? Didn’t I tell you my Aunt was young, hip, and cool? Also, she helped me learn to cook as we made dinner together every night when I stayed there. She always had to have dinner on the table in time for when my Uncle Bud was coming home.
Another summer tradition was going to Knott’s Berry Farm. Because of all the help I gave my aunt during the summer, she always paid my way into Knott’s. This was a real treat because we grew up poor in my family, so trips to amusement parks were not usually something we ever did. I remember screaming and laughing with her on some of the scarier roller coasters, and when we’d get off them, she’d say, “That was totally awesome!”

As Cassandra mentioned, there was nothing she couldn’t talk about with her mom. It was the same with me. I truly believe because my aunt was there to hear and listen to me without judgment, that she saved me from making some really stupid mistakes in my teenage years. As a teenager, I didn’t feel as if I had anyone to turn to in my moments of drama and angst, and she was always there to pick me up and help me move forward. I will forever be grateful to her for that, and I hope to be the same kind of Auntie to my own nieces and nephews when they need someone to confide in.

She always struck the perfect balance of everything in her life, and religion was no exception. This was a rock to me as a teenager to see how someone could be hip, cool, and religious at the same time. She was always a shining example of someone strong in her faith and religion. This example shined so bright to me when she used to attend church all on her own with her three small children. Week after week she did this without fail for several years, and she never gave up the faith. I truly will always admire her for her rock-solid faith and dedication.

When I later got married and moved out of state, I really missed having my aunt nearby. The homesickness I had for her and my own mom (she was cool again by then) and everyone else I loved was very acute. It was always such a welcome joy to come home to California to see my beloved family, and seeing my sweet Aunt Deana again during these times always made my day. As more time and years went on, visits became fewer and far between. This past November, it had been a year since I saw her last, and I had the chance to come home for Thanksgiving . Gone was the young, hip, cool, Auntie I loved and adored. In her place, was a debilitating disease called dementia. It was a complete and total shock for me to see how far she had gone down in so short a time because I was still able to have somewhat normal conversations with her a year prior to that time. After my visit with her, when she could no longer see me, I broke down into sobs as we drove away from her home. I knew the Aunt I had loved and adored all those years was gone, at least in this life. I mourned my Aunt’s loss the rest of that day, but later was able to come to the conclusion that she is still there. Her mind may be gone, but she is still there! Her spirit is alive and well! Someday in the next life, she will be whole again. What a day that will be when we are all whole again, and reunited forever! I hugged her extra tight that day before I left, and I cannot wait to do so again the next time I see her. Dementia may take a lot from us and our loved ones suffering through it, but it cannot take away our love and memories. In my mind, she will always remain my young, hip, cool, and pretty Aunt. I love you so very much, Aunt Deana! Thank you for helping me become who I am today. I know I would have had some serious dark times without your love and support!

Tuesday, December 18, 2012

Christmas Shopping With Dementia

***SPOILER ALERT: TO MY DAD-YOU MAY WANT TO READ THIS AFTER CHRISTMAS, AS IT MAY SPOIL YOUR CHRISTMAS SURPRISES!***

My kids always get so excited at Christmas time. It goes without saying that they love to get presents. But they also love to GIVE presents. It is so hard for them to contain their excitement and patiently wait for us to open up whatever Christmas surprise they come up with for us. And we never know what we will get. One year, my daughter made me a necklace of mismatched beads on a strand of yarn. Every single day for 2 entire weeks before Christmas, she begged me to open it. She just knew it was a gift I would love! I wore it with pride. Many times, the kids will find treasures from their room that they will wrap up and give to us as gifts (I have a few of those under my tree right now!) I love their sweet innocence and the pride they have when they give us these gifts from the heart.

Last year, I went shopping with my mom to help her pick out Christmas gifts for all of the grandkids. She has always been great at picking out gifts on her own, but for obvious reasons she needed a little extra help. This year, she hasn't said much about gifts at all with the exception of once or twice when she told me "I need you to tell me what your children might like for Christmas." I knew it would be difficult for her to understand and pick out gifts on her own, even if I made a list and even if I was there with her. So last week, I took my dad (instead) shopping for Christmas presents for all of the grandkids and other family members.

As I wrapped and placed all of the presents under their tree, I realized that one person did not have any gifts under the tree: my dad. All of us kids got presents for dad, but for the first time I can remember, mom hadn't picked anything out for him.

Not that dad would care; he has always been the kind to think of others and never himself. Whenever we ask what he wants for Christmas, his reply is always the same,

"I don't need anything. Save it for the kids; it's about them."

Yesterday, when I was over at my mom's for the day, I asked her what she had gotten for dad for Christmas. She said that she had gone out shopping with my Aunt Claudia and got him something...I hate to write what it is, in case my dad did not follow directions and is reading this blog! But suffice it to say that it is something she buys frequently, which he would wear, so it is somewhat "routine" for her. I suggested we go out after lunch to Kmart (we didn't have much time between lunchtime and naptime to go anywhere father than Kmart, which is up the street) to pick out a few more things for dad. Surprisingly, she agreed.

I felt good; I was happy that I was able to convince her to get out and help her shop for dad! I didn't know how this would go, but I figured I would be able to find some things that I knew dad would like and be able to influence her on what to get.

I couldn't have been more wrong.

As we walked in the store, mom decided we should walk through every aisle and see what was there that he might like. We started at the beginning; although mom decided we could skip the card aisle because she didn't need to get him one of those. In the middle of the walkways were displays of colognes and body gels. I asked her if she thought he might like some cologne. It took me a couple of times of asking her before it registered to her that I was talking.

"Huh? Colo-what? I don't know what that is. I don't know what you're saying about that."

I explained to her that it was the stuff you put on your body to make it smell good. She buys her body fragrances at Bath & Body Works...would she like to get dad some fragrances for himself? I pointed out sets of aftershave, gel and cologne. She seemed to look through what I was pointing at and instead of answering or acknowledging me, continued her search on the shelf for something more familiar to her that he would like.

We made our way to the candy section, where there were several displays of holiday treats. Mom kept talking about "that one kind of candy thing" that dad always liked. I asked her to tell me what it looked like, what is tasted like as I tried to figure out what she was talking about, but to no avail. She knew there was something that dad liked, but she couldn't quite figure out what that was. I picked up a box of Good 'n Plenty candies along with a box of Jujifruits. Those of 2 of dad's favorites; surely mom would recognize those! As I held them in front of her, she squinted her eyes and shook her head as she stuttered,

"No, no I'm not getting him that. I don't know what that is...I don't know that he would like that...I've never known that he likes that...that's not familiar to me..."

Despite my attempts to assure her that these were dad's favorites and that they would be perfect for his stocking, mom could not be convinced. I let out a sigh as I tossed the boxes of candies in my cart; if I had to buy them myself, dad would have them for his stocking.

As we continued aisle after aisle of candy and food, we ran into the sausage displays. This was sure to spark her memory! I remember every year, growing up, mom would buy dad some sausage for his stocking. She remembers the past so well...I was sure she'd know to buy him the sausage. Mom did not recognize what I was showing her.

"Mom, you used to buy this every year for dad...he loves it! He would love it if you got it for him. You could wrap it and put it under the tree," I said, over and over.

It was as if I wasn't even talking. She plugged along down the next aisle, me following behind, waving the sausage at her, when she suddenly stopped in front of the display of Goldfish crackers.

"He really likes these fishy things too, he eats them with all the kids too. He would like this," she said, as she tried to make a choice between regular flavor, or extra cheddar. I couldn't help but to chuckle.

"You want to get him goldfish crackers for Christmas?" I asked with amusement.

"Yeah he would really like it, he really likes them," she said, as she tossed them into the cart.

"What else do you want to get for him, mom?" I asked, as she led me through the next aisle. We were heading towards the household cleaning products; surely there was nothing up for gift considerations and we could pass through those aisles. I tried to redirect her down another path and turned to make my way towards the right section of the store.

But mom is fast. I turned around and she was gone. I knew she couldn't have gone far. I called her name, in vain, because she didn't answer me. I found her in the laundry detergent aisle, seemingly intent on something.

"They don't have that kind-the kind for the special kind that I have to buy...with those letters on it."

I knew what she meant. I led her to the other side of the aisle where the Gain 'he' (high efficiency) detergent sat on the shelves. She became excited and declared,

"Oh yes, oh good, they have it. Your dad really likes this one so much 'cuz it washes his work clothes so good too."

I wrinkled my eyebrows and looked at her as I tried to make sense of what she was saying.

"Mom, you don't mean that you are getting that for dad for Christmas, do you?"

"Huh?"

I rephrased the question,

"Mom, is that what you want to get dad for a Christmas present?"

"Yes I am, this is what he likes. I know he'll really like this too 'cuz it washes his clothes so good."

I tried to reason with her and suggest that you don't buy your husband a bottle of laundry detergent for Christmas. But mom would hear no reason. She was adamant that dad would love to receive laundry detergent for Christmas.


As she put the detergent in the cart, and we walked around the store a little more, I found a couple other things (in addition to his favorite candies) that I put into the cart, with several attempts at explaining why she should get these particular items for dad (mostly because it was something that I knew he would like). The answers were always the same,

"No, I'm not gonna get that, no. I don't know what that is...I'm confused at what that is...I don't know that he would like that."

She tried explaining to me something else that she wanted to add to his gifts.

"Those things you use, you put in the thing at the computer that you...with your hand," she explained, wiggling her hands in the air, "that you use with computer things too to make it work...you put it in things to make it work, your dad always needs those things too..."

Somehow I figured out that she was describing batteries. She wanted to get dad batteries. We walked around the store, looking for a section with batteries and before I could catch up with her, she ran ahead to the man behind the cash register in electronics (who was helping another lady check out) and tried to explain the things she was looking for. He looked very confused, as did the lady checking out, and as I approached my mom, I gently put my arm around her and explained to the cashier that she was looking for batteries. He looked at her and in some detail told her exactly where to go to find batteries. Mom hastily interrupted him and said,

"What? Register 10, what? I'm confused at what you're talking about, my brain is so stupid. Because of that surgery which left my brain stupid, I don't know what you're saying."

It always chokes me up to hear her call herself stupid and watch her struggle to realize that she cannot comprehend what others are telling her. I patted her back and told her it was okay, I knew where the batteries were. I led her to the front of the store, to Register 10, where we picked out a pack of batteries and took our place in line.

As we checked out with the cashier at the end of a very long hour, I was able to sneak the candy and another little item in with her selected gifts, with the intention of her using them for stocking stuffers. I was fully prepared to buy them myself if she threw a fit, but after much fuss she finally agreed on adding those 3 small things, with the condition that,

"Well then I'm gonna tell him when he opens it that you told me to get it, 'cuz I don't know that he likes that stuff."

I just laughed and said, "Okay mom, you can blame it all on me."

We drove home at 1:12 (which, she made sure to remind me, was way past her naptime) and went into the house where she immediately dumped the batteries, goldfishies, candy, and the other small item, into a gift bag which was behind the tree. (It also had the other gift she bought him the other day). She threw the plastic bag on top of the items, folded the top of the bag over in half, and stuffed it behind the Christmas tree. I reminded her that the candy was for his stocking, to which she replied,

"What? Stocking, what? I don't know what you're saying, stocking."

I let it go. It wasn't important anyway. What was important was that she had found him a gift. Maybe it's a bottle of laundry detergent and a pack of batteries. But they were gifts that she picked out, that she felt he would love. I'm not sure how he will react when he opens up his gifts. He might laugh. He might cry. He might do both. I know I certainly felt both reactions. But I also marvel at the childlike innocence that my mom possesses. It was a humbling reminder to me that Christmas is not about the fancy gifts or the shiny red bows. Christmas is about giving from the heart. My mom with dementia helped me to remember that this Christmas season.

Friday, December 7, 2012

Remembering Deana: Part IV

For today's "Remembering Deana" segment, you are stuck hearing from me ;) I figure I oughta write down my own memoirs of my mom, even though I share tidbits here and there. Plus...other people needed some extra time to get back to me with their writings.

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Everything I ever needed to know, I learned from my mom.
Whether she ever realized it or not, my mom taught me so many valuable life lessons, both through word and through deed.

My mom kept an immaculate house. She made sure to teach her children how to keep an immaculate house, too! Each week we had our chore that we were responsible for (bathroom, living room, kitchen). It was our job to keep that area of the house cleaned up daily and to deep clean it on Saturdays. At the time, we moaned and groaned about it. When I went away to college, and had 5 roommates and weekly “clean checks” at our off-campus apartment, I was grateful for the skills that my mother taught me. I am grateful now that I have my own household, that I know how to keep a clean house. Okay…a somewhat clean house. I’m doing the best I can with 5 kids. I honestly don’t know how my mom did it!! Thank you, mom, for teaching me the value of hard work and how to keep a clean house.

My mom was a great cook. She taught us the importance of eating a balanced meal and made sure we had a healthy dinner on the table every night, which-I might add-we ate ALL TOGETHER. We rarely ate fast food. Mom wanted to keep us healthy. This was another very useful skill that I took with me when I went away to school, as well as when I got married and had a family. Thank you, mom, for teaching me how to cook and for also teaching me the value of eating together and connecting as a family.

My mom was talented. She made beautiful cakes. I remember my siblings and I would cringe when we went to friend’s birthday parties and their cakes were store bought (I know, we were cake snobs!). That was unthinkable in our household. My mom, who learned from her mom, made every single birthday cake as well as our wedding cakes. Even with twins, she made sure we each had our own, special cake for our birthday. She began teaching me how to decorate cakes when I was a young girl. When I was 13, she let me venture on my own and my best friend and I decorated the numbers “1” and “3” for my and my brother’s cake. When I became a mom, my mom was there by my side guiding me and directing me on how to make my children their own birthday cakes. Thank you, mom, for sharing your talent with me.

My mom valued family traditions. The holidays were always a great time for us. Every year, my mom would have a Christmas baking day and make all kinds of yummy Christmas goodies, passing them out to friends and neighbors. I loved helping her bake, especially at Christmas time. Friends and neighbors always looked forward to her treats as well, especially the English Toffee. This is a tradition that I have kept with my own children, and cherish very much. Thank you, mom, for passing down family traditions that I can carry on with my children.

My mom was fun. She liked to go to amusement parks, water parks and take us on camping trips and vacations. She liked to be silly and try to make us laugh (especially when we were grumpy!) I remember many a times when mom would turn the music on her stereo full blast while we were cleaning or baking, and singing and shaking to the beat. Sometimes, when I was little, she would take me by the hands and have me dance with her. My friends thought my mom was fun, too. I remember when she started working at my elementary school. She was the “nice” supervisor. I was proud that my mom worked there and even more proud that she was one of the favorites on the playground. Mom kept her fun spirit as I grew into a teenager. I remember feeling pride in the fact that my parents were young and fun. She loved to joke around and she liked to *try* and be funny. Some things were not as funny as others. One morning, she was driving my friends and me to school. Our high school was in a rough neighborhood, full of low-riders who blared their car stereos at deafening volumes. It was quite annoying. Thinking she would make something comical of it, mom lowered her carseat, slouched down, rolled down the windows and turned up her stereo full-volume. Her music of choice? Oldies. I remember shrinking down in my seat, begging her to turn it down, but deep down I was laughing and thought she was pretty funny. Thank you, mom, for having a sense of humor and for being fun.

My mom was open-minded and had open communication with her children. There was nothing we couldn’t talk about with our mom. Sometimes it could get embarrassing, as my brother asked some far out questions about sex (things he had heard from kids at school). Mom, though reserved, always answered our questions and was always there to talk when we needed her. She made it clear that, no matter how embarrassing it was to talk about something, that she wanted us to come to her. Anytime I had a problem that I needed advice for, or even someone to share happy news with, mom was there to listen. Thank you, mom, for listening to your children and for teaching me how to have good communication with my own children.


My mom was religious. She had a deep faith in God and in His son, Jesus Christ. She took us to church every single week; even in my younger days when my dad was “less active” and did not attend church regularly with us. My mom faithfully took us, every week, despite our embarrassing and sometimes unruly behavior. Mom taught us to love and have faith in our Heavenly Father and Jesus Christ. She taught us how to pray and how to build our faith and testimonies of the gospel of Jesus Christ. She taught us the importance of going to church and serving others there. Thank you, mom, for living your faith and teaching us through your example.

My mom was supportive. Her children were her first priority. She was at every award’s assembly, every spelling bee, every piano recital and every choir concert. I remember her chaperoning almost every field trip we took in elementary school. She was always the class mom and there for every school party. When I was in high school, she did her best to be at every home swim meet that we had (by that time she was working in the afternoons as a Head Start Aide, so sometimes she was late to my meets). She was always there to greet us at home after dates or nights out with friends. She was there for the births of all her grandchildren (except the grandbaby in Florida; she went after the birth).
Some of my favorite memories were when my mom came up to visit me at college (a 16 hour drive away from home) for our college's annual "Mother's Week". I think this was the time when I really grew closest to my mom. Going away to college, at 17 years old, made me realize how much I loved and appreciated my parents. And even though I was having the time of my life, I missed them terribly. Mom really began to become more of my friend during this time and I loved to spend time with her. I remembering counting down the days until it was time for mom to come up for Mother's Week. During that week, she would go to my classes with me, take me out to dinners and shopping (which was a big treat for a "starving student"!, attend college events (including our fashion show that I was a part of), and she took the time to get to know all of my friends that I had made while away at school. It was truly a wonderful time of bonding with my mom and it brings tears to my eyes to think back and remember these special times. These are memories that I will always hold dear to my heart. Thank you, mom, for always putting us first and supporting everything we were a part of.

My mom was many things; this is just the tip of the iceberg. These are some of the things I love most about my mom; some of the things I miss most about my mom. Thank you, mom, for teaching me everything I needed to know to be the wife, the mother and the friend that I am today.

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If you have a memoir you'd like to contribute for my Friday feature of "Remembering Deana", please contact me.

Thursday, December 6, 2012

The Money Tree

You all know the famous saying, "Money doesn't grow on trees." My mom used to say it to me when I was a kid, no doubt her mom said it to her, and I find myself saying it to my kids. Sometimes it seems that my kids really do believe that I have a tree right in my backyard that I can go pick money off of whenever they want something!!

"Just use your card," my youngest daughter once told me. I can remember saying something similar to my mom,

"Just write a check!"

At that age, kids have no concept that there has to be actual money behind the check (or the card) to pay for it!

As a person with dementia regresses back into a childlike phase, they begin to lose their concept of money. A person who may have once been very frugal (before dementia) now might hand out $100 bills to total strangers! No joke! My mom isn't handing out hundred dollar bills (yet), but when it comes to money, I am finding it even more difficult to teach her the concept than my own children. I suppose that is because, while both are childlike, a child is teachable; a person with dementia is not.

When I was growing up, my mom was very frugal. I well remember her cutting coupons for groceries and allowing us to shop for clothes from the sale racks only. My sister and I both took piano lessons, and my brother played baseball for while, but whenever we asked for anything else extracirricular, mom always said we didn't have "the money." When we were in high school, mom made us pay for half of our sports "sprit" packs and we were expected to earn our own money, through hard work and fundraisers, for other extracirricular wants (such as our madgrials tours across the US, etc). Looking back, and talking with my dad about it in hindsight, mom was just being a penny pincher. Although as an adult, I very much appreciate the fact that she taught us about hard work. Those are values I instill in my children as well. But she was a bit tight and kept herself on a very strict budget.

Mom paid all the bills and was very organized in her method of bill pay by keeping a notebook where she would write every bill for the month, the amount due and when it was paid. My dad never had to worry about the bills being paid and really never worried about how much money was in the bank; my mom took excellent care of that. He just worked and brought the money home.

Since dementia, my mom has lost all frugality. For the past several months, my mom has been rapidly losing her concept of money. At some point, my dad took over the finances and transferred the money into the family account (which mom has access to) when needed. When the bills were continually being paid late, if at all, dad began resuming the role of paying the bills.

Mom is constantly asking people to take her to the JC Penney Outlet, because "they have really good clothes things for really cheap." About middle of this year, my dad, who is self-employed, had a little dry spell with work. Obviously, with no money coming in, money was extremely tight. There was no room to frivolously spend money on things that were not necessary. Yet mom would ask, day after day, for someone to take her to the JC Penney Outlet or to Kohl's with the coupons she had received in the mail. We continuously tried explaining to her that there was no money to be spent. She'd get a confused look on her face, furrow her brow and say,

"No, it's not really expensive. It's really cheap too and I have the good coupon things from the mail too."

Again, we told her that dad was not working and he had no income coming in; she could not spend money that was no necessary.

"No, it's okay. I have really good coupon things too and I can use the credit card thing too," she'd reply.

"Mom, you have to have money to pay the credit card," I'd argue back.

"No it's fine. It's not due for a really long time...a month or more so I'm fine. I can put it on the credit card."

No matter how much I (or anyone else) would try to explain to her that there is NO work lined up and all spending is on a temporary freeze (even with credit cards), she could not connect the dots.

These conversations still come up on a monthly, sometimes weekly, basis. Since summer time, she has started receiving a little bit of money from work disability. When she gets that check in the mail, she thinks she's hit the jackpot! She wastes no time in calling me, or someone else, to con us into taking her to the bank. On a few occassions, she has even planned to hide the check from my dad so he wouldn't know the money came. It seems she had plans of her own for the money! None of these plans ever involve paying the bills; this is "her" money. When the issues of bills come up, the response is,

"Well your dad hasn't given me money yet to go to the store....[or] to pay the bill." Just last week she received a check in the mail, and when I asked her if she wanted me to take her to the grocery store, she said that my dad had not given her money yet to go to the store.

The best way to handle this is to take preventative measures on their spending. Yes, we know that we need to set up automatic bill pay so she never sees the check. It's on the "to do" list. Yes, my dad needs to file power of attorney with the bank and make some notes on the account banning her from withdrawing large amounts of money. An allowance would be another good solution for a person with dementia. In her book, Susan Scarff shared that she traded her husband's large bills (that he once used to carry in his wallet, pre-dementia) with $1 bills. She limited the amount he had in his wallet. When he handed them out to strangers, it was not a big loss, and he didn't know the difference between large and small bills. [If you want to read her book, you can order it directly from this link, it is a must read if you have not read it!!] My mom can still count money and knows the difference between large and small bills, but eventually that knowledge will fade as well.

Indeed, when it comes to money, you must treat a person with dementia as you would treat your small child. There is no way to teach a person with dementia that money does not grow on trees.

Tuesday, December 4, 2012

Social Security At Last

When the realization set in that my mom would be unable to go back to work in her current state of mind (in the fall of '11), my dad began seeking assistance to supplement her income, such as disability or Social Security. Trying to obtain Social Security has been an absolute headache for my dad.

When he first applied for social security, late last year, we had no definitive diagnosis for my mom. She had had a CT Scan by her network neurologist, who stated that there was shrinkage in the frontotemporal lobes of the brain, but he reassured my parents that it was NOT dementia or Alzheimer's. We were left with many unanswered questions and chalked it up to brain damage from her surgery. (You can read the full timeline here). One thing was clear: she was no longer able to fulfill her duties as a HeadStart teacher.

My dad applied for Social Security and sought out the neurologist to sign a form for disability. For months, he was given the runaround. The neurologist directed him to her primary doctor. After waiting for an appointment with the primary doctor, the doctor directed dad back to the neurologist. They told him to go to a psychiatrist who then pointed him back to the other set of doctors. He got second opinions from other primary doctors and neurologists...bottom line: nobody wanted to take responsibility to sign her disability forms. It was an absolute nightmare!! At one point, social security provided their own doctor to come and assess mom (I believe that was early this year, around January, before her diagnosis, but possibly at the end of last year). Their doctor concluded that she was "fine" and they didn't see anything out of the norm with her. I want to know exactly what kind of doctors they hire!!!! Do they even have a medical degree?? It doesn't take a rocket scientist to see that mom is unable to function on a higher level-even back then. At any rate, she was denied social security and told that they could appeal her case.

Dad finally hired a social security lawyer. He filed for a waiver, I believe before we had a diagnosis. I'm a little fuzzy on the timeframe of all of this, as it was one big headache. But by March, she had her diagnosis and they were able to submit that to the judge. And then the waiting began. Dad was told that he could be waiting up to 18 months for a court date. Can you imagine??

In one of my support groups that I belong to, some other group members informed me of a "compassionate allowance" with social security. Basically, if a person's illness falls under one of the listed categories of illnesses, they have the right to a speedier process, foregoing the many hoops that one must go through to obtain social security. On the list are many forms of dementia, including frontotemporal lobe dementia. I saw the light at the end of the tunnel! I gave my dad this information (this was during the summer...around June or July) and he took it back to the attorney. They acted as if they weren't sure what he was talking about. I researched the social security website myself and sent the links to my dad to forward to the attorney.

By August, my dad received a notice in the mail that he had a court date: December. We were disappointed that it was so far away, yet we knew it could be far worse (at least the date wasn't a year away!) We were frustrated because, given the compassion allowance, she was eligible to see the judge in a matter of weeks rather than months or years. Again, my dad took the information and sent letters and updated paperwork from UCLA over to the attorney. They said that they would "look into it". This was end of August/beginning of September. My dad never heard back from the attorney about the compassionate allowance.

By October, I decided to take matters into my own hands and help my dad out. It's been difficult for him to stay on top of all the phone calls and paperwork, as he has a job away from home, as well as many duties he's had to assume in the home. I called social security myself, with the same outcome that my dad had: waiting on hold for an hour at a time, only to be told that the can't give me any information about my mom's case due to the fact that she had an attorney. After several phone calls, and a lot of wasted time on hold, I felt defeated. I called my dad to report the outcome. He told me that the attorney told him that they actually could give me information about her case, they just don't want to be bothered. This tidbit of information relit my fire! I immediately got back on the phone, ready to fight with the last operator who had been extremely rude and unhelpful. I asked for supervisor and got his secretary. I left a message for the supervisor and for the first time, I felt like I had reached someone who actually listened and sympathized with my position. She assured me she would give him the message and tell him it was urgent to call me back.

Half an hour later, I received a call from the supervisor who very willingly gave me all of the information I needed. I asked him about the compassionate allowance (which, by the way, none of the other social security phone operators knew a thing about) and he agreed with me that her diagnosis fell under the compassionate allowance. He pulled up the paperwork that was submitted by the attorney and read it to me and together we concluded that the likely reason that they did not qualify her immediately for the compassionate allowance was because of the wording in the letter. They used the proper term for her illness, "semantic dementia", which is a form of frontotemporal lobe dementia, rather than using the term "frontotemporal lobe dementia". They most likely did not realize that semantic dementia fell under the frontotemporal lobe dementia category. He told me that if I could get another letter from UCLA stating that semantic dementia was in fact FTD, that he would be more than willing to file it electronically himself, saving me the headache of having to go through the attorney. Afterall, this was the attorney's job to investigate in the first place! Somebody didn't do their job.

By the time we were able to obtain another letter from UCLA and file it with social security, we were only weeks away from our December 3rd courtdate with social security. But we now had the evidence filed that she does qualify for the compassionate allowance as well as the benefits, and that was a comfort.

After months and months (over a year) of dealing with this nightmare, my mom finally had her day in court yesterday. Even though we had all of the proof and evidence we needed to win the case, I was still a little nervous about how they would rule. Would they take the time to read the papers and understand her illness? We had been through so many hoops to get to this point; I was praying that we would not face anymore setbacks.

Less than an hour after she was due for her hearing, I received a phone call from my dad. They won the case!! He filled me in on the happenings of the hearing.

They met with the lawyer for some time before the actual hearing, to review all of the information. The established that mom was not driving, per doctor's orders. My dad informed them that we have people coming over a few days a week to supervise her and make sure she is safe. After that, they brought mom and dad into the courtroom before the judge. They talked to my mom and told her that she needed to be sworn in. Mom looked back at them with a blank expression. They tried to explain to her again that she needed to take the oath and be sworn into the court. Mom did not understand what they were trying to tell her. My dad said they spent the next 10 minutes trying to explain to my mom what it meant to be sworn in and tell the truth, and she just was not getting it. The judge looked at her and asked,

"Would it be the truth to say I'm wearing a blue robe?"

Mom responded with, "No it looks black to me."

He tried again, "Would it be the truth to say that you are a blonde?"

Mom answered again, "I'm not a blonde, I'm a redhead."

After several questions, I think it became apparent that mom was not understanding what was being asked. They simply were not able to swear her in. Finally, the judge said,

"I don't have any questions for her."

For a moment, my dad was a little confused and I think worried that they were not going to hear the case. But after some court verbage between the judge and attorney, the attorney came back to my dad and said they had won the case and they should be receiving the final notification in the mail within a month.

What a sigh of relief! There is still much work to be done, but this opens to the door to many more possibilities. My next step is to try and qualify her for Medi-cal (this can be done 30 days after she receives social security) and then get her onto a county program that provides assistance throughout the day. We are one step closer!!

Friday, November 30, 2012

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.

Tuesday, November 27, 2012

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.

Friday, November 16, 2012

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.

Thursday, November 15, 2012

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.

Tuesday, November 13, 2012

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.

Friday, November 9, 2012

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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If you'd like to contribute a story, please read this post and contact me.

Tuesday, November 6, 2012

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.

Friday, November 2, 2012

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.

Thursday, November 1, 2012

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.