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!

--------------------------------------------------------------------------

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!

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.

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.

-----------------------------------------------------------------------

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.

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

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.

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!!