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.

Monday, September 25, 2017

FTD Awareness Week!!

Last week I wrote a post for World Alzheimer's Awareness Day, not knowing that an awareness day (or rather, an awareness week) existed for FTD. FTD stands for frontotemporal lobe degeneration (or dementia), which is the category which Mom's dementia falls under. The Association for Frontotemporal Degeneration (AFTD) is challenging all of those affected to make a social media post, sharing our stories and raising awareness along with a picture of our loved one, with the hashtag #ThinkFTD. You know me-awareness is my middle name!

For those of you who have been following my blog for the past 5 years, you probably have a good understanding of what this disease looks like. If you are new to my blog, you can view my archived posts, dating back to my mom's diagnosis in 2012. In a nutshell, Alzheimer's is not the same as FTD! Alzheimer's accounts for over 50% of all dementias, while FTD makes up roughly 20% of all dementia cases. Semantic dementia (Mom's variation) is one of the rarest forms of FTD.

The warning signs of FTD include personality and behavior changes, trouble finding words, lack of apathy, and obsessive behaviors...just to name a few. It is difficult to diagnose and is oftentimes misdiagnosed as depression or other personality disorders. In fact, the average time it takes to find a diagnosis is 4 years. It took us over 2 years and 6 specialists to finally get a diagnosis, after the doctors in our medical clinic assured us that "it isn't Alzheimer's and it isn't dementia." Knowing what we know now, we can see that it all started about 5 years before her diagnosis in 2012, at age 50. The doctors were only right about one thing: it wasn't Alzheimer's.

My dad and I were just talking last night about our road to diagnosis. We were thinking back on all of the odd things that Mom said and did in the years leading up to her diagnosis. How did we not know? In all fairness, we did know that something was wrong, but dementia wasn't on our radar; she was way too young. Had I known anything about FTD at that time, we would have known what we were dealing with much sooner and saved ourselves years of frustration and hurt feelings. But how could we have known?

Please take a minute to share this post. You never know what friends you might have who are going through changes with a parent or loved one and are lost as to what is going on. Help raise awareness!

To learn more about FTD, please visit www.theaftd.org

Thursday, September 21, 2017

World Alzheimer's Awareness Day

Did you know that today is World Alzheimer's Awareness Day? Even though Mom didn't have Alzheimer's, I'm wearing purple for her today. Alzheimer's is the most common form of dementia, accounting for over 50% of all dementia cases, but there aren't awareness days for the lesser known forms. So I'm counting today as a dementia awareness day as well.

Also, in honor of World Alzheimer's Awareness Month, Chatbooks has created a special book that can be ordered called "What Matters Most". I ordered one with pictures of my mom, but I think I'm going to go back and order another one with pictures of my family and the people who matter most to me. The awesome part about this book is that for every book they sell, Chatbooks is donating $1 to Alzheimer's research at Brigham Young University's Alzheimer's Research Department. It's really a win-win; you get a beautiful, meaningful book and a portion of your money goes to research. You can check it out by visiting their website here. They also have an app and if you have an Instagram account, you can set it up to automatically print out your pictures in a book every time you reach 60 photos. I do this and have several volumes of Chatbooks now, filled with pictures and memories. I never have to think about uploading to a photo center or organizing them in albums; I love it!

Another great place to donate, in honor of Alzheimer's Awareness Month, is at The DEANA Foundation ;)

I am challenging all of you to make a social media post today about World Alzheimer's (*and dementia*) Awareness! If you don't know what to post, just share this one!

Monday, September 18, 2017

All The Little Blessings

They say that when you are feeling low to think of all your blessings and it will help to lift you up.

The past couple of months have been full of highs and lows. I miss my mom terribly, and now that she's gone physically I feel like all the years of missing her have hit me like a brick. I missed her while she was alive, but I tried to keep it together to care for her. I still had her here to hug and even talk to, even if she didn't understand. Now she is gone, and the grief of the past 7-10 years have caught up with me. My mind turns back to so many things....back to how she was before she was diagnosed; back to the little changes, before she was diagnosed, that left me feeling hurt and bitter; back to learning how to love her again, despite her illness; back to the past year, months, days and hours of her life.

It's hard to not look back and wonder why. Why did this happen to my mom? Why did God allow this to happen to her? So many times we had prayed for a miraculous healing. Where was our miracle?

I don't think there's always a why. Sometimes, bad things happen to good people. Sometimes God steps in and sometimes he lets life play out. Sometimes there's a reason or a bigger purpose, and sometimes it's just the luck of the draw. Either way, I do believe that there are things that we can learn from each hand we are dealt. We can choose to let the grief consume us and to crumble under the pressure, or we can choose to grow and stretch ourselves in ways that we never thought possible. That doesn't mean that there aren't moments of grief. I have spilled many tears along the way and continue to do so even now. But, as I sit back and reflect on all we've been through, I realize that we have been blessed many times along the road. God didn't answer our one big prayer; Mom never found a cure. But there were so many, many little prayers that were answered along the way. The journey has been hard, but I know he didn't turn His back on us. I thought it might help to write down some of the blessings, the miracles, the answered prayers, that we have witnessed over the past several years.

To start with, Mom never knew what hit her. In her younger years, she did make mention a few times about how she was afraid to die or leave behind her family at a young age. It was such a pain to get her diagnosis but in a way it was a blessing that it took so long because Mom never had to know that she was living with a terminal illness.

Mom was able to be home until the very end. This is not typical of this disease. It was so important to my dad to keep her at home and I know that's what Mom would have wanted, too. No doubt she lived longer because she was able to stay home. It wasn't easy, but it was a big blessing to us to have her home.

Mom never got violent. So many people with FTD become violent and end up having to be sedated or living in a facility. I don't know how we would've been able to manage her at home with caregivers and grandkids and so on if she had become violent.

We always had the help we needed. During our transitional time, we had sweet ladies from our church come over to volunteer and watch Mom. We had family help for a period as well and every time we started to get worried about needing to hire another caregiver or two, someone turned up.

Up until the very end, Mom never became fully incontinent. While she spent her last year in diapers, it was mostly just pee that we had to change and she still used the toilet on occasion. I won't get into full details on the toilet issues, but what a blessing it was to not have to change poopy diapers on a daily basis. I know that was one thing my dad worried about and don't get me wrong, we did have messes to clean on occasion. Since she went through the toileting motions everyday, it helped significantly to ease that burden.

Mom was healthy. Pneumonia and UTI's are common and frequent in dementia patients and we were lucky to not have even one UTI, infection or pneumonia incident. We had one hospitalization earlier on to remove her gall bladder; other than that we rarely had to take her to the doctors for any kinds of sicknesses. It made it more difficult getting her qualified for hospice, but how fortunate for her and for us that we didn't have to deal with the challenges of sicknesses and hospitals!

Mom never forgot Dad, and I believe she never forgot me either. She said both of our names up until a few months before she passed away. Even though she couldn't speak any words those last few months, she knew who my dad was and she seemed to know who I was. She forgot most everyone else (although she may have known deep down and was unable to communicate it), but I am especially thankful that she always knew my dad.

When her time was nearing the end, there was a lot of fear and anxiety. The biggest thing we worried about was her being in pain and having a dramatic, painful, end-of-life experience. We prayed a lot, especially my dad. He asked God to spare her the pain, to let her go in her sleep. That is exactly how she went. Her passing was very peaceful and she didn't seem to be in any pain during those last few days.

Lots of prayers went up for family members (who wanted to say their good-byes) to make it in time to see Mom before she went. The night nurse on that Tuesday night before had thought she'd pass through that night, or by the end of the day Wednesday. The last visiting family member flew in Friday morning and Mom passed Saturday morning. Everybody made it to see her and she spent that last week surrounded by so many people who loved her.

Let's not forget to mention the timing of it all. The big bummer was that we missed my cousin's wedding. BUT, the timing of everything was truly amazing. When Mom started to take a turn, and I had a big gala that I was putting on for the foundation, I became worried. I admit that I did pray that nothing would happen before the event, and she was spared during that time. Having everything happen during the summer allowed my brother and his family to be here for most of the summer, both to spend time with her and to be with her during her last moments. I will forever be grateful that they were here with me during those last two weeks, especially when the hospice doctor came to give his assessment. All of the grandkids were out of school and able to be where they wanted to be: by grandma's side. We opted out of the extra curricular activities over the summer, a decision I had struggled with but had turned out to be another blessing.

Family, friends, church family...we were blessed with so many great people who helped us to get through this hard time from meals to the funeral luncheon to gifts and cards. I've written a lot about this on my other posts, so I won't get lengthy here, but I do believe people were inspired to do all that they did to help us get through. They were our angels.

There are so many other little miracles we saw along the way. Like the time when we had to take her car keys away and it turned out she had a flat tire and wouldn't have been able to drive that day, anyway. Or the time that she wandered onto a busy street and a church member just happened to be passing by and found her, putting her in their car and driving her home. Or the time when my sister arrived, just in the nick of time, to intercept my dad's coin collection that she was attempting to spend on her sleep aid medicine at the store. Or even the fact that the cashiers at the store watched out for her during that time (when she would sneak out of the house to try and buy her meds!) We always seemed to be one step ahead of disaster and it was nothing short of a miracle.

We all have our own beliefs and I am certainly not trying to force mine on anyone. To me, it seems obvious that there were moments of divine intervention, so many more than I even wrote about. So many prayers were answered along the way. I cannot be convinced that any of this was coincidence. I will always mourn the loss of my mom. Maybe the day will come where I won't sit and wonder why. Maybe. Mom didn't find a cure, but God helped us through. I am grateful for the tender mercies and the blessings that we have been given throughout this journey.