The Documentary is Here!!

At long last, our documentary is here!!

Grab your tissues. It was a mix of emotions for me to watch the video. Part of it was filmed last summer (2016) while the last bits were filmed just this past July...only weeks before my mom passed away. It brought tears to my eyes to see her on camera, to remember those last precious moments that she was with us. For those who have been reading my blog over these past several years (particularly those whom I haven't met), this video really brings our family to life. I hope you will watch it and capture a glimpse of the love between my parents and our family.

I am now calling upon every reader to please take 10 minutes to watch this short video documenting our family's journey of dementia! When you are done, PLEASE SHARE the video! Share on facebook, share through email, share through word of mouth...just share!!

So, here's how it works. Zach, the filmmaker, is doing something a little bit different with our story. Usually, he breaks one story into several clips that can be embedded into social media outlets. For us, he decided to do our story all in one piece. He has uploaded it to be viewed on Vimeo. You can view the trailer to the short film, following which you will be invited to make a $3 donation to view the full story. The best part: all of the money paid to view the video will be split between My Alzheimer's (the name of Zach's project) and The DEANA Foundation. Can you imagine the possibilities of people we can help with our caregiving grants through this viewership? Many of my posts have a few thousand views. If each one of my readers views this video and shares, we have the potential of reaching thousands, of raising thousands of dollars!

Furthermore, if you missed some of my other posts about My Alzheimer's, you can read all about it on Zach's website. Basically, he is on a mission to compile the largest collection on the web of Alzheimer's and dementia stories. He has traveled all around the country, on his own dime, to document stories from people living through this disease. He has spent countless hours and dollars on this project but he is determined to shed light on the disease, bringing awareness to the many challenges that come with it. He is also highlighting different organizations who are trying to make a difference in the dementia world. I highly recommend checking out his work!

Please join us in raising awareness and in bringing help to families who need it!

Without any further ado, I present to you our story!!

Deana's Story: Dementia and the Middle Class from MyAlzheimers on Vimeo.

First Annual Memory Masquerade

The past few months have been incredibly busy: taking care of my home and family, keeping up with my home sewing business, chauffeuring kids to various activities, taking care of Mom (with bathing and nurse visits and whatnot). To top it all off, I had the crazy idea of starting a non-profit foundation a couple of years ago and we decided it was time to put together our very first charity gala. We gave it the theme "Memory Masquerade" with the idea that it would be an elegant evening that would allow us to come together and honor the memory of our loved ones who have been affected with dementia. The masquerade took 7 months of planning and prepping-it almost felt like planning a wedding! We had to pick a venue, choose a caterer and a menu, find entertainment, work out decoration details, find sponsors and donations, make connections within the community, plan a program. It was a lot of work! Luckily, I had a committee of fantastic volunteers; I could not have done something like this on my own. I feel like a fire has finally been lit with the foundation. People are learning about who we are and people want to get involved. There have been many moments of discouragement along the road, times when I've questioned my sanity at the attempt to start this charity in the midst of my crazy life. But the past 6 months have brought about much growth and all of the efforts that we've put into this are finally beginning to pay off!

To start with, we have received our very first grant, through the County of Riverside, to help fund the event. It wasn't large (the largest grants they are giving out are $1,000, which is what we received), but it helped a lot and gave us (the committee) the confidence we needed to move forward. For the first time, we were able to secure sponsors for our event and we received some great donations for our silent auction! Some of the awesome things we received include a helicopter ride, lunch with the Mayor of Riverside, an autographed copy of Kimberly Williams-Paisley's book, professional photography packages...the list goes on! Best of all, we had support from friends, family, and others within the dementia community.

In the months before the event, I became very anxious and worried. What if, after all of this planning and prepping, nobody showed up? What if we only broke even with our overhead costs or worse, what if we ended up in the negative? Other (more experienced) members of my committee tried to reassure me that no matter what, it would be a success. They told me that if we got 40-50 people out to a first-time gala, it would be a success; if we broke even in our expenses or made just one or two thousand dollars, it would be a success. I told them I wanted to shoot higher: my goal was 100 people and $10,000. I saw some of my volunteers wince as I said it. They told me I should expect half of that. I started to second guess myself. I decided I better not set my hopes too high. If we could reach those numbers, I'd be thrilled; but if we only had 40 people show up, I knew I'd be really discouraged.

Fast forward past all of the tedious details leading up to the night of the gala. Nobody wants to read about all of the sweat and tears that went into it! Suffice it to say that it was a lot of hard work but I am proud to say that the evening was a big success. We ended up with 75 people on our guest list and we raised over $9,000!! (That does NOT count in the value of everything that was donated to us for the event!) Even though we didn't quite reach the goal I had set, it exceeded my realistic expectations of the evening. We had rotary club members and representatives from the city and the Mayor of Jurupa Valley (a long time friend of our family) came and emceed the event. One of the greatest things for me, on a personal level, was to have so many family members come out to support what we are doing. My dad and his sister and brother-in-law came, one of my mom's brothers (and his wife) came, my mother-in-law, father-in-law, and a couple of my husband's siblings came. My twin brother and his wife came in from Arizona. For most of these family members, it was their first time attending a foundation event. It meant so much to me to have them all there. I was so happy that they could see what it is that we are accomplishing with the foundation.

We also had a very touching tribute, honoring those who have been affected by dementia. It started with a slideshow of my mom and then transitioned into a slideshow of others who have been affected. My husband put hours into this slideshow and I must say, it was a masterpiece. I debated on sharing it online, but I've decided I am going to save it for another time. We also had a beautiful table decorated to honor those currently fighting/those who have lost their battle with dementia. We made keepsakes for the families to take home with them.

There were some things that I would do differently for next year, but all-in-all it was a very successful event. Our guests all seemed to enjoy themselves. We had a photo booth (with a photographer on spot) which really added a lot to the evening. The decorations turned out beautiful. I think everyone went away feeling that it was a lovely evening. As we were cleaning up, one of our volunteers (who has been to just about every charity event in the city) made the comment to me, "This is by far THEE best first time gala I have EVER been to." Needless to say, I was on cloud 9 for the next few days!!

It is hard to put into words what this foundation means to me. It is so much more than just raising money to help other people. Of course, that is why I started it; I wanted to help other people and build a community of support for those going through this horrible disease. But this is also a way for me to remember my mom, to keep her alive and a part of my life. When she is no longer here with us physically, this will be her legacy. Through this foundation, we are able to keep her memory alive and honor the life she led. We are able to give people that same opportunity-to honor and remember their loved ones. It is so easy to be overcome with grief when going through this journey, but this has truly helped me to work through that grief. It gives me a sense of purpose and the opportunity to "make lemonade out of the lemons". I am excited to see where this next year brings the foundation, and really looking forward to making the Memory Masquerade even bigger and better next year!

Parts of the event were videoed and will be featured in the documentary that is being filmed about our family journey with dementia (it's due to be completed by the end of this summer!) I will definitely share that documentary when it is finished. In the meantime, here are some fun photos of the evening!
Some set up and decoration pictures:

Some fun pictures with our backdrop:

With the Mayor, giving The DEANA Foundation two thumbs up!

So grateful for all of these amazing volunteers!

Welcoming guests to the Memory Masquerade.

Memory Masquerade

I've always tried to be very open with our journey on this blog, sharing every part of it; the good, the bad, the ugly. The other day I realized that I have been holding back a big part of my journey with dementia. Why am I doing this? I don't really know, but I suppose a big part of it is fear; mostly fear of what people think.

I have mentioned The DEANA Foundation on here before, but I don't mention it often. I think a big part of that is because I don't want to come off as though I'm trying to advertise or "sell" something to my readers; that isn't my intent with this blog. With that said, the foundation has become a huge part of my life and a big chunk of this journey and I feel that I'm not being authentic by holding back and not talking about it. The truth is, I spend a portion of nearly everyday contributing something to the foundation, whether it's phone calling, making presentations around the community, working out details on events, etc. Some days, I feel like I am crazy to have started all of this while in the midst of caring for my mother and my young family. There are moments when I question myself if this is what I should be doing and focusing on. There are moments when I feel very inadequate, like I am a tiny fish in a giant pond. There are moments when I want to throw in the towel and quit (not gonna lie). Yet, there are other moments when I feel like I was definitely meant to carry out this work, especially when we are able to award grants to help families that have nowhere else to go. It gives me a positive direction to channel my emotions and it is a way of honoring my mom. While at these events, I'm able to talk about her, talk about what we've been through while trying to make a change within a broken system. I feel that in some small way I am making (or attempting to make) lemonade out of the lemons we've been given. That is becoming my new mantra for life: making lemonade out of lemons!

For those who aren't up to speed on The DEANA Foundation, you can visit our website to learn more, but basically our goal is to raise money to help middle-class families (since they are the ones always left behind) with caregiving costs associated with dementia. We do this through donations, fundraising and hosting events.To date, we have been able to help 3 families in our community with our grant program. We have done so much over the past couple of years and have many great things in the works right now, so I'm optimistic that number will continue to increase each year.

Right now, we are planning our first annual Gala fundraiser, which we've given the theme of "Memory Masquerade". The goal is to raise money for the foundation, which we award as grants to families who need help. This will be our biggest event so far and is going to be a beautiful evening; our guests will get dressed up and enjoy a nice, catered dinner. We will have a photographer there taking photos and we are having a silent auction, which we've gotten some amazing items donated for (including a helicopter ride, an autographed copy of Kimberly Williams-Paisley's book as well as an autographed copy of "Still Alice", lunch with the Mayor, themed gift baskets...just to name a few of many fabulous things we are auctioning off...and the donations are still rolling in!). We'll have some entertainers throughout dinner and a guest speaker is coming from The Alzheimer's Association. We are also planning a very special tribute for those affected by dementia. I don't want to spoil the surprise of everything we are doing, but we are making some lovely, meaningful keepsakes for caregivers to take home and will also have a special presentation dedicated to all of those affected. Given the fact that this foundation wouldn't exist were it not for my mom, we are paying her a special tribute as well, which gives meaning to me and my family on all that we are doing. I'm really excited about the evening but if I'm being honest it has brought a bit of anxiety as well. For one thing, it's been a lot of work and at times it is overwhelming. It consumes my thoughts and I'm constantly second guessing myself. For another, I'm so afraid of failing. With all of the hours that I and my volunteers have put into this so far, and all of the emotion and energy and focus we have given- I don't want it all to be in vain. Nevertheless, I am optimistic that the evening will be a success and that this work will move forward! When I sit back and look at what we've been able to accomplish this far, I am proud of our work and feel motivated to keep pushing along, hard as it may sometimes be.

Even though I don't speak of it often on this blog, know that the foundation is still plugging along! It grows stronger with each passing year and I feel like we are finally gaining momentum and heading in the right direction.

To view our gala information, you can view our website or click here for our Facebook event page.

Newspaper Article

When I started blogging, it was originally a way for me to express my feelings and keep family and friends up-to-date on what was happening with mom. I never imagined that I would have so many readers or people following our story. We've received so much support and love throughout this journey and that really helps to get us through.

A couple months ago, I joined a task force, initiated by the mayor, for our city (actually, the city next to mine...we branched off from the city and became our own a few years ago). The idea of this task force is to get Riverside certified as part of the Purple Alliance. Becoming a purple city means that the city is taking steps to make the community a friendly place for people with dementia through education to the public and businesses, training law enforcement and emergency responders how to recognize and deal with a person who has dementia, and so forth. It's about raising awareness and helping people to feel that they are not alone.

Since I've been attending these meetings, my name appeared on the task force list, which The Press Enterprise (newspaper) picked up. I was contacted by a reporter in September and interviewed about my mom's story as well as the mission of The DEANA Foundation. They (the reporter and photographer) also came and spent a morning with us, observing our day and taking pictures of mom and me. It has been a mix of emotions to do this story. It's exciting that we are bringing awareness to this disease and accomplishing a great work in our community. I am open to sharing this with others in an effort to educate and make positive changes. It is a little difficult to see mom's face in the paper as she is now; I know she would not be thrilled with her appearance these days, if she was in her right mind. But I made sure to include some photos of "before" so that people can be reminded of the person she was-the person she really is. She will always be beautiful to me, and whether she knows it now or not, her life still holds great meaning and she is helping others around her with her story.

You can read the full article here.

Celebrations

Last week we had a couple of celebrations of sorts.

First, we celebrated The DEANA Foundation's 1st birthday! It's hard to believe that just one short year ago, we gathered together with an idea in mind and had our first official foundation meeting. Exactly one year later, we awarded our first 2 caregiving grants! We've made a lot of progress over the past year; we still have a long way to go, but we are getting there inch by inch. Certainly, this was cause for celebration! And so we held our foundation's 1st birthday party at Farrell's Ice Cream Parlour last Thursday. We had a great turn out, a lot of which was family. Due to other events of the week (which I'll cover in a minute), we had a lot of family visiting in town. My dad's four sisters, several of my cousins and my twin brother's family all came into town and joined us for the celebration. Three of my mom's four siblings also made it to the celebration (the 4th sibling lives in Montana). We handed out buttons for every attendee to wear and it was just amazing to look around and see my mom's silhouette (our logo) being worn on all of our partygoers. I can't even express what it felt like to have that show of support- not just for the foundation, but in honor of our inspiration behind the foundation: my mom. Here are a few photos from that night, beginning with my mom's siblings and then some other photos of family and friends.

Sadly, the reason we had so much family in town was because my grandma (dad's mom) passed away a few weeks ago. On Friday, we celebrated her life with all of our family and friends. It is sad to see her go, but we had a lot of laughs (and some tears) at the great memories of grandma. For the first time in many years, all 16 of her grandchildren were together. It's sad that it takes death to bring people together, but good that we could all be here with each other. Family is everything.

Saturday was the Walk to End Alzheimer's. Because of all the family in town, we had a huge team this year!! It was so amazing to have everyone there in love and support of my mom. I know some people don't understand it (it doesn't change the situation with my mom), but walking together unites us and symbolizes our love and support for not just my mom, but for my dad as well. My dad and I are a lot alike in that family support means a lot to us (I suppose it's most accurate to say that I've inherited this value from my dad). I know that it meant the world to him to have all of his sisters there with him. Family is everything to him. I'm really glad that we were able to do this together and send the message to my dad loud and clear: he is not alone!

This year we also set up a foundation booth at the walk. It was great to meet new people and make new connections!

We were also invited back to sing The National Anthem again (my sister, Christina, friend, Mickelle, and myself). It's an honor to be asked to sing our country's anthem at an event so near and dear to me. The coolest thing happened this year: the MC looked down from the stage and saw the Team Dee Superheroes and thought they all looked so awesome that he invited the whole team up to stand with us while we sang The National Anthem! That was incredible!

As you can see, I have an amazing family. I tear up just thinking about how awesome they are. I couldn't have asked for a better way to spend all of these celebrations than with my family. They mean the world to me! This is what gets me through from one day to the next-knowing that all these people have my back and are there to help us get through this. Thank you all for being so incredible!

Karaoke Night

Last Friday night, we had our first "big" event for The DEANA Foundation. It was a "Karaoke For a Cause" night and we hosted it at an adult daycare facility in Riverside. I'm feeling so good about the results of this fundraiser that I wanted to share about it with you all!!

To start with, my favorite part of the whole night was being able to recognize and honor my mom. Even though she wasn't there physically, I was able to share with our guests about the woman who has inspired this foundation. It felt great to share some things about my mom and the woman she once was; the person she really is. It's important to me that my mom is remembered-not just for her strange and quirky behaviors from dementia.

We were privileged to have some special guests in attendance: two City Councilmen (one who is retired and one who currently serves Riverside county) as well as Riverside's Chief of Police. They were very happy and supportive of the mission we are trying to accomplish. City Councilman Chris MacArthur even got up and gave some remarks, thanking us for our work. It felt amazing to have their support!

We had a good turn out and all of our guests had a great time. The food was good; our DJ was awesome and kept the party alive. I was surprised at how many people actually got up and did karaoke! There were some really great entertainers in our crowd. We started the karaoke portion off with an opening performance. Our VP (Melissa) my friend (Mickelle) and myself dressed up and sang a song. My good friend, Ember, helped us to rewrite the lyrics to The Spice Girl's "Wannabe" to go along with our purpose for the night. It was silly and a lot of fun. (You can see the video on our facebook page).

So now for the important (and exciting) update. While our numbers haven't been confirmed yet, I can tell you that we raised well over $1,000 that night, which I would say is awesome for our first big event like this! In addition to that money raised, Care Connexxus awarded our foundation a grant that we can award to a family to give them a week of free adult daycare at their facility. Combined with the other money we have raised throughout the year, we are ready to start awarding our caregiving grants this fall!! I am feeling really excited about this! We still have lots of room to grow, but considering we've really only been off the ground and running for about 7 months now, I think this is a very big accomplishment. We anticipate our attendance to double next year and our supporters are already asking about our next event (stay tuned!)

Do Good!

When I was a kid, my mom found a card with my name on it and the meaning written beneath it. It read:

"Cassandra
Helper of Mankind"

She always told me that the meaning of my name fit me perfectly; that I was the kind of person to help others. I don't know how well I've really lived up to my name, but I can say that I do try to help others and spread some goodness wherever I go. Maybe I've subconsciously had it rooted in me because of my mom's opinion of me.

Some people may think I'm a little bit crazy for starting The DEANA Foundation. Some frequently asked questions include:

"Don't you have enough on your plate?"
"Shouldn't you be putting more of your energy into your mom rather than a foundation?"
"How does this benefit your parents (mom specifically)?"

These are probably all fair questions and they are all questions I have asked myself. Sometimes I wonder why I take on these ambitious project9s. Why can't I just be "normal" like the other moms around me and spend my time volunteering at the kid's school, or join the PTA? (By the way, this was always my plan as a mom). I am always second guessing myself and I've spent many hours pondering these questions. These are some of my conclusions.

1. "Don't you have enough on your plate?"

*Yep, I have a lot on my plate. I always do; that's a part of life. Just when you think things are going to calm down, something else comes up. I'm the kind of person that likes to stay busy. I don't spend much time in front of the TV; I like to be productive with my time. I will always have a lot on my plate.
*It isn't something I can really put into words, but I feel inclined to do something in the face of the disease. Early on, before I started writing this blog, I felt the need to be proactive in the dementia community. Being involved keeps my mind busy and gives me a focus. It's easy to sit back and let the sadness and despair consume me; I feel so helpless with my mom and in some way this makes me feel like I'm doing something.

2. "Shouldn't you be putting more of your energy into your mom rather than a foundation?"

*I feel like being involved in this cause and in this foundation actually helps me to put my energy and focus into my mom, rather than away from it. I am reminded how much my dad needs support and I try my best to be there for him and my mom. There aren't many times of the day that my mom isn't at least in the back of my mind. I think it also helps to bring our caregivers and our community together and more aware.
*One day, my mom will no longer be here. That is a sad reality that we've had to face; we lose her little by little, more and more each day. When she is gone, there will come an emptiness. Even though there's an emptiness now, I still devote a lot of time and energy to taking care of her. I need something to keep me going when she is gone. I don't want her to be forgotten. I feel like this foundation is a good way to honor her and keep her memory alive. I hope it's inspiring and encouraging for my dad to see how many people support and love my mom.

3. "How does this benefit your parents (mom specifically)?"

*There are no guarantees that this will benefit my dad and mom. I didn't start this foundation with selfish intent. Nevertheless, my dad is free to apply for a grant just as any other family is able to. He will go through the process and our board members will vote on who receives what amount of money. Our goal is to help as many families as possible; certainly he isn't exempt.
*My family is not the only family suffering. Who knows if one day I or one of my children could be affected? Aren't we all here to help each other??

I struggle daily with self-doubt. I harbor the fear of failure. I want this foundation to succeed. I want my mom's name and legacy to be remembered. I want to help other people who are suffering from this heartbreak. I want to live up to what my mom always thought of me, to be a "helper of mankind."

With all of that said, I do want to invite all of my readers to check out our foundation website. It is actually getting a professional make over right now, so if you check back next week it will look different (and way better!!). Our foundation needs help to give help. If you feel inclined to join the cause and help others on this journey, there are many ways to help, whether near or far.

For my local readers, we have a foundation charity event coming up on August 21st. It is going to be an evening of fun with dinner, karaoke, some magic, and raffle prizes. I'm posting the flier here and you can also visit our facebook page and website. Tickets must be bought in advance in order to plan for food (deadline is August 17th). You can buy them on our website's "shop" page or through me personally.

Thank you to all who continue to support our family and The DEANA Foundation!

To visit The DEANA Foundation, please click here.

Foundation Update

Every now and then I like to give an update on all that is happening with The DEANA Foundation.

I've been working like a mad woman on this foundation. We've created an official Facebook page and ever since then we've been working really hard on getting our name out there; I feel as though I have another unpaid job. Ha ha. But I am so passionate about the cause that it hardly seems like work. I have an awesome board (4 other members besides myself) who all have strengths that are truly benefitting this foundation.

We are officially an incorporated charity and have filed for our non-profit status (just waiting on the IRS!). We have a beautiful logo that my cousin, Sam Harrington, designed. Note that he used my mom's silhouette. Amazing.

Our official website is up and running. We have plans to update it, but wanted something in the meantime while we raise enough funds to get it professionally detailed. The website address is: www.thedeanafoundation.org

We've hosted our first successful fundraiser. We had a pizza party at a local restaurant and we raised over $500 for our foundation. I was touched by the show of support from family, friends and our community. We have already began planning for our big opening event, which I am SO excited about. We are waiting until we've obtained our non-profit to set a date, but we are aiming for the end of August/beginning of September.

Right now, we have launched a campaign to help really get us up and running. We have filing fees to cover, our website, insurance to obtain, a venue to book for our "grand" opening event and other overhead costs (business cards, advertising, merchandise for our shop, etc). It takes a lot to get going, so we've created a campaign on indiegogo. Basically, we have 40 days to raise $3,000. We are currently at $400 and have 33 days left. I made a beautiful slideshow that is featured on our campaign. If you haven't seen it yet, visit our campaign and click on the "gallery" tab. You can do that HERE.

We have so many projects and events underway right now...I won't bore you with all of the details, but things really are coming along quite well. My vision for this foundation is to reach and help families across the globe. As we are just getting started, we will likely be helping those in our community first (that's where we receive most of our support right now). BUT, I have plans on how to expand this foundation to reach everyone, and hopefully that will happen very quickly. It will require some help from others across the country, but I'm happy to report that I already have contacts lined up to help in other states. Eventually, I want to see different chapters of The DEANA Foundation across the globe, much like the Alzheimer's Association. It may seem like a big feat, but we will get there, even if it takes us a decade or two to do it! If anyone is interested in volunteering and helping The DEANA Foundation in any capacity, please contact me or visit our website to learn how!

I want to thank everyone who has been a support to this foundation thus far. For all of the likes and shares on facebook, the donations, the participation in our first fundraiser...the list goes on. We could not do this without your help and support and we thank everyone who has contributed to that. Thank you, from the bottom of my heart!