Thursday, November 16, 2017

3rd Annual Purple Boat Float

Last Sunday was our 3rd annual Purple Boat Float. If you've missed my posts about it in years past, it is a beautiful event put on by the Commission of Aging here in Riverside. People come together and sign/dedicate a boat to their loved one who has been affected by dementia. At dusk, we take the boats out into the lake and light tea light candle in them, launching them out into the water. It is a very sweet evening.

It started after a group of us came together to start the Purple City Alliance, which helps bring awareness and training about how to deal with dementia to businesses, making our city a dementia friendly city. I only attended the first few meetings (mom's care had become too involved to continue the meetings), but it is a great thing that our city is doing! The woman who started the Purple Boat Float actually sits on The DEANA Foundation's board now! :)

This year, dad was unable to make it to the boat float. My Aunt (his sister) was throwing a surprise 60th birthday party for her husband in Northern California, so my dad and all 5 of his siblings went up there for that event. I'm glad that he was able to go and have a fun weekend getaway with his siblings; they are a lot of fun when they are together! But, the boat float wasn't quite the same without him. I felt a little "off" this time around, I suppose because it was the first boat float where Mom hasn't been alive. Still, it was a beautiful event. It has grown considerably since our first year and I have no doubt that it will continue to grow more each year.

As always, I set up a booth for the foundation, giving information to anyone who might need caregiving help. I'm usually the only person running the show (along with Jeff, of course) but I was lucky to have a friend (and also board member) join me this time.

Something special about this year was having Mom's brother and sister-in-law join us. My sister, along with Mom's sister (Aunt Claudia) joined us last year, and Uncle Mike and Tia Tina joined us this year. My hope is to have more and more family members join us each year!

I was a little bit worried going into this boat float that I was going to fall apart. I had a really rough week last which included two big breakdowns (right when I thought I was getting better!) I was just recovering from all of those emotions when it was time for the boat float. Even though I wasn't feeling my absolute best (emotionally), I held it all together and made it through the night. It was a nice evening and I was so thankful to have family there with me. I don't think they even understand what that means to me right now, but family support helps me get through the days!

Monday, November 6, 2017

Great Joy & Great Pain


Last night, my daughter performed in our city's version of "America's Got Talent". It was her first competition and the talent for the night was amazing! Over 70 people auditioned and only 19 of those made it into the actual show; Aubrey was one of them. I wrote all about it and posted the video of her amazing performance on my other blog (click here), but the other part of my feelings about the night seemed more appropriate to share here.

First of all, I am so grateful for the wonderful family members and friends who came to support her in this big show. This is the biggest thing she has been a part of and whenever she performs, she always asks who is going to come watch her. I think it gives her confidence to know that she has her own cheering section of supporters and people who love her. Watching her on stage was an extremely proud mom moment for me. She has grown so much over the past year and I'm in awe of this little human that I had a part in creating!

After Aubrey's number, I couldn't help but to think about how proud my mom would have been to see her granddaughter up on stage. Mom always beamed with pride whenever she watched her own children perform. I have no doubt that she would have been there with us and would have been so incredibly proud of Aubrey's talent. So many emotions were stirred last night, and ever since; like the fading fire that has been stirred in the ash. Many feelings that I have been struggling with have been reignited. It's hard to put everything I am feeling into words. One on hand, I feel incredibly proud and joyful of Aubrey's accomplishments. On the other hand, it has awakened feelings of extreme sadness, hurt and even anger.

Nobody ever said life would be fair. Still, there are moments when the unfairness of it all gets to me. I try to be upbeat and positive, but that's not how it is all the time. I feel like I am such a fragile person right now, that I am going to break at any given moment. I think I hide it well, but there are some moments that I really struggle. It breaks my heart that my mom couldn't live to see this. It breaks my heart that Aubrey didn't have a grandma there to cheer her on; it breaks my heart more than words can say. There are other heartbreaking thoughts and feelings I have that are probably better left unsaid. It just plain sucks that my mom was cheated out of this part of her life; that we were all cheated of having her in it. I have lost more than just my mother. I've lost my cheerleader, my confidant, the grandmother to my children, my friend. I miss her more and more every day. I thought it would get better, but some days it only seems to be worse. I don't know when or if it will ever get any better. They say that it gets better with time, but the void will always be there. It will be there at every birthday party, every recital or show or game, every holiday; graduations and weddings and births. We will think about her every time, and we will mourn her all over again. Somehow I have to learn to live with this without falling apart every time.

Forgive me for my negativity. There are still many things to be grateful for. The people who showed up last night mean the world to me. I know my dad would probably rather be watching a football game, yet he comes to watch his grandkids and support them in their endeavors. My father-in-law made an hour drive to be there. My Aunt Sharon and Uncle Tim came. Other friends and family members came out as well and it means a great deal to me to have all of them there in support of Aubrey.

I try to imagine that my mom really is there watching. Maybe, just maybe, she's on the other side with her parents and with her friends, bragging, "That's my granddaughter!" I can imagine the smile beaming across her face and the loud cheering; the heavenly kiss upon Aubrey's cheek. Of course, I have no proof that this scenario could really exist. I have no idea what it's like on the other side or if they are allowed to peek in on us. All I can do is imagine and hope. It's the only thing that brings me comfort.

Monday, October 23, 2017

Caregiver Reunion

One of the strange things about Mom being gone is that the house is always empty. Before, there was always someone there. We had a constant flow of family and caregivers. My dad hadn't needed to set his alarm system in a good couple of years because someone was always there.

Our caregivers became like family to us. They were so involved in our day-to-day lives. Mom bonded with them. The grandkids bonded with them. We bonded with them. Even our extended family members bonded with them, especially through the last week of Mom's life and all of the family activities (and the funeral) which followed. I know that several of my extended family members have become facebook friends with at least one of our caregivers, who was there every day that last week of Mom's life. They will always hold a dear and special place in our hearts for the love and care that they gave to my mom.

It has been a little sad losing them in our daily lives. Luckily, modern technology enables us to keep up with them but it's not the same as having them with us and talking to them all the time, like it was before. Dad and I have talked about having "caregiver reunions" every so often, where we can get together to visit and catch up.

Switching gears for just a minute...you may or may not know that my dad got a pet pig last December. She has brought a lot of fun into the family and has been a sort of companion for Dad. The caregivers all adored her as well and have watched her grow from a tiny, 7 pound pig to a pleasantly plump, 65 pound "mini" pig! We've had a lot of fun with her. People are always fascinated and curious about Miss Piggy and lots of visits have been made, friends bringing their kids over to see the pet pig! We've had lots of fun dolling her up with pearls and piggy polish and my aunt even made her a tutu. This week is Miss Piggy's birthday, so we decided it would be fun (and humorous!) to throw her a little piggy birthday party! Since the caregivers also bonded with Miss Piggy, we decided to combine the piggy party with a caregiver reunion.

3 out of our 5 caregivers were able to attend Miss Piggy's birthday! I wrote about the piggy party on my other blog, but the focus of this post was mostly about reconnecting with our caregivers. It meant so much to us that they came to Miss Piggy's party (and they didn't even think we were being silly about throwing a party for a pig!) It was really nice to sit back, enjoy a meal and just visit with them. How thankful I am for the caregivers that we had in this journey! We hope to have more gatherings together in the future!

And here's a little preview picture of Miss Piggy at her party. If you want to read all about the fun we had and see some really cute pig pictures, click here.

Friday, October 13, 2017

Let's Make Lemonade!!

I've had two exciting things happen this week! One was announced yesterday as our documentary went live (if you missed it, be sure to check it out!).

The second is that I launched a new blog!! I am excited and nervous all at the same time. Whenever I write and put myself out there I feel a bit vulnerable...are people going to read what I post? Will they like what I write? Can I succeed with this venture? I am going into this with the mindset that this is for me. Writing is something I have always loved to do and this new blog is helping me to focus on happy, light-hearted things while expressing myself through pen (or keyboard). Of course I am hoping and working for it to be successful!

Let me tell you a little bit about my new blog. Of course you all know that I've gone through my fair share of grief over the past several years (but then again, who hasn't?) I have really tried to learn and grow from my trials and make something positive out of the negative; to make lemonade out of the lemons. This thought has gone through my mind countless times over the years: how to make lemonade out of lemons. When I was thinking about what I wanted to write about, my mind kept coming back to lemonade, and about finding the sweet things in life. I thought about all of the sweet things that I do have in my life and how even through the darkest of times, we can find the light. There will always be struggles, but life can still be sweet if we search out those sweet moments and focus on the things that make us happy. I brainstormed lots of lemonade ideas for a title and domain name for my new site, but everything was taken! I wanted something to do with making lemonade but which also incorporated my family into the theme. I thought about "homemade lemonade" but of course that was taken as well, and then a thought popped into my mind: Jonesmade Lemonade ("Jonesmade" in place of homemade). I tossed the idea around for several days and finally decided to quit doubting myself and settle on a name. Jonesmade Lemonade it is!

I quickly got to work creating the site itself and adding some content to start. Let me tell you, it has been a lot of work! It has consumed much of my free time. However, I am really proud of myself. I have never considered myself a techy person; I tend to get intimidated by computers. I watched a lot of tutorials, joined a couple of free webinars and joined a blogging group to get help with setting up and getting my lay out how I envisioned it. I still have some things to add, but it's getting there and I'm really proud of how it looks!!

My son-in-law came up with the graphics for me. I wanted something simple and clean, but cute and catchy. I love what he came up with!

And also this cute logo for social media icons:

The niche I chose was family/lifestyle, which means I will be writing a lot about our family and adventures, as well as thoughts and ideas surrounding family life. I plan to share recipes and craft ideas that make me happy and I also plan to share inspirational stories of other people who are making lemonade out of their lemons.I hope that you will all come visit me at Jonesmade Lemonade!!
I also have a facebook page here and an Instagram page here.
Show me some love!

Thursday, October 12, 2017

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.

Monday, October 9, 2017

The Birthday Miracle

Last week was a better week for me, emotionally. I almost made it through the entire week without crying!

I decided to move forward and start writing another blog. Much of my week consisted of designing my site, writing content and watching tutorials on how to write a successful blog, with a potential of making money. I'd love to be able to contribute income to my family in doing something that I love-writing! I am still waiting on a couple of things before I am ready to launch my blog, but hopefully it will be this week!

Between writing, working on my new blog and working on some sewing orders that came in, my mind was kept pretty busy. I don't think a minute goes by that I'm not thinking of my mom, but I didn't have time to stop and focus on all of the detailed memories that usually bring on the tears.

Saturday was my birthday. It was my first official birthday that I haven't had Mom here. She hasn't understood my birthday in a few years, but last year I did serenade myself in a birthday song in hopes of sparking her memory. I was able to get a grin from her. Call me crazy, but I can't help but to wonder where she's at and what she's doing. Did she know it was my birthday...wherever she is? Maybe, for the first in years, she was celebrating with me, or at least thinking of me. It's a nice thought, anyway.

Jeff and my birthday are 4 days apart, so we celebrated both of us all weekend. Friday, Jeff took the day off work and we enjoyed a little day date while the kids were at school: lunch, shopping and a reflexology massage. That evening, my Aunt and Uncle took my family and me to dinner; of course Dad came along as well. It was really nice visiting with them.

I was determined to have a good day, and I did. Jeff and the kids spoiled me with presents, hugs and kisses, and we spent the day together having fun. We went bowling and stopped by to lookie-loo at some RV's (we still have our sights set on getting an RV!) Later that evening, my daughter graciously babysat her brothers while Dad took Jeff and me to dinner. My dad gave me a very nice card with a very sweet note, telling me that Mom is proud of me, and he signed it "Love Mom and Dad". It meant a lot to me and brought [good] tears to my eyes. Throughout all of this, he still signs every card with both of their names. It makes me feel like a part of her is still with me, wishing me a happy birthday as well.

On Sunday, Dad and I made our usual, weekly trip to the cemetery and we were pleased to see that her headstone was finally placed. It was a birthday miracle! I became very choked up when I saw it. The one thing they forgot to install was the vase, so Dad went back to the truck to retrieve an old cup and makeshift it into a vase while I sat by her headstone. I was thankful for a few moments alone because I didn't want my dad to see my tears. Why I am afraid of letting anyone see me cry? For some reason it was emotional to see her headstone. I don't know why I am surprised by anything anymore, but it did catch me off guard to feel so emotional about it, especially with how long we've been waiting for it. I love that it's there and it was beautifully done; I daresay it is the most beautiful headstone in that entire section. But it was probably the last thing to "handle" with her passing and it is another reminder of how final everything is. It left me feeling a little sad and emotional throughout the remainder of the day. But, today is a new day. This is the start of a new week. I have a lot to look forward to this week, if I can keep my focus!

Thursday, September 28, 2017

My Unexpected Identity Crisis

I've had a lot of time lately to think. For the first time since I became a mother, over 12 years ago, my entire days do not revolve around meeting the needs of another person. I had two very big changes at the start of this school year. One being that I no longer have my mom to care for, and the other being that my baby started first grade; all of my kids are now in school all day long. I'm left alone for almost seven hours out of the day; alone with my tasks and alone with my thoughts. This is a brand new experience for me.

It's been a strange adjustment. In many ways, it has been really nice to have some quiet time, to not have to be rushing from one spot to the next, back to back. A couple of weeks ago, I had a nasty head cold and I was actually able to sleep during the day! What an amazing experience that was! I have also appreciated having some time alone to mourn the loss of my mom. Not that I lay in my bed and cry all day, but I am able to better process everything that we have gone through with some time to myself. And there are moments where I do allow myself to lay on my bed and cry; just not all day long.

I have had some difficulty in organizing myself, though. I always have things written down on my to-do list, but without pressing deadlines of having to be in so many places throughout the day, and having to tend to the constant needs of young children or a sick mother, I don't always feel the urgency in accomplishing my tasks right away. You might say that there are moments where I feel a little bit lost. My identity for the past several years has been one of a caregiver. Now that I'm not caring for anyone every minute of the day, I'm having a bit of an identity crisis. It's as if I don't know what to do with myself. I'm trying to figure out where to go from here, what I want to do with my time besides cooking and cleaning the house (which isn't so much on my want list as it is on my duty list).

The one thing that I feel very drawn to is writing. I've picked back up on writing the book that I started a few years ago, a book about my mom and our family's full journey with dementia. I don't know if anyone will want to read it besides my dad (who has been reading each chapter as I write), but it's been a therapy of sorts for me to write it. I have laughed and I have smiled and I have cried as I've written, remembering the person my mom was, the person that my heart aches for. We'll see where it all goes once it's complete.

I'm also dabbling with the idea of starting another blog. I will keep this one going because I still feel like there are things for me to share. I recently saw a quote that said, "Your life's journey will never be the same once dementia crosses your path." How true that is. I will never go back to being the person I was before dementia entered my life. My life has gone down a completely different path because of it. Mom may be gone, but the journey is not over. Dementia has forever affected me. So, I will continue to write here and I am thinking about adding additional content (possibly some content from other people) that might be useful for those still in the middle of their caregiving journey. The ideas are still in the making. But, I'd like to write other pieces as well. I really enjoy writing, but I don't necessarily want to write about sad things all the time. For my own mental well being, I can't write solely about dementia day in and day out. I'd love to write about the sweeter things in life as well: my kids, traveling, things I enjoy, etc. I have been thinking about possibly starting another blog where I can have a happier, more creative outlet for my writing. I think it would give me some focus in a time when I feel very scattered and unfocused, and there is some potential down the line to make money while doing it, which is always a plus, right?

If you would have told me six months ago that this is where I'd be today, I wouldn't have believed it. I was so overwhelmed and just struggling to keep my head above water; I don't think I could have comprehended time for myself. I'm still trying to keep my head above water, just in a different way. I know that time is the healer and I will adapt as the clock moves forward. I am realizing that it requires conscious effort on my part to do this, to find my happy and begin to heal.