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 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.

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

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.

Tuesday, August 29, 2017

Finding The New Normal

It's been exactly one month since my mom left this life. In some ways, it seems longer and in other ways, I can't believe how quickly that month passed. It has been such a mix of emotions for me and I admit that it has been much harder than I imagined it would be. While I am glad that she is free from her suffering, I miss her immensely. I feel like I am finally able to mourn her loss fully and completely. Bits and pieces have been going for a long time now, but it's been difficult to fully grieve while she was still here physically. And we learned to love her even with her disease, so there's almost a second loss here. It's a complicated grief process.

For the two weeks following Mom's passing, we had family in town. My adopted-daughter was here, some aunts and uncles and friends from out of town had come in. My brother and his family stayed here (at my dad's house) until Mom's services were over and it was a big comfort to me to have him here. I worried about my dad, so it was a relief to know that Joe was there during that rough transition and Dad didn't have to be alone in the house while everything was so fresh. We drew close together during that time and in many ways I feel like our bond was strengthened. So many times throughout this journey, I have felt alone and it was nice to have sibling support to get through this. As a family, we made funeral arrangements together and ran our errands together and spent every evening at dinner together. I think there was maybe one hour of time throughout that entire two weeks that I was ever alone.

The week of the funeral, my boys went back to school. The week after, my daughter started junior high but she only had half days that entire week, so I wasn't alone for most of the day. Last week was my first full week of this new life I am adapting to without Mom. It was such a strange feeling to get the kids off to school and not have anywhere pressing that I needed to be. I almost didn't know what to do with myself. Don't get me wrong-there are plenty of things I could or should be doing with my time. My sewing business has orders to fill. The foundation always has work to be done. The housework and laundry are never ending. There's grocery shopping/errands, meal prepping, bill paying...yet I have been struggling with the motivation to get any of it done. I have been slowly pushing myself to get up and be productive (it's not in my nature to sit around and do nothing), but I admit there have been a few days where I've gone back to bed for a bit to cry, or visited Mom's grave instead of tending to my chores. Other times, I have taken time out to read a book or to write in my journal or look through pictures, or do other things that I'm usually "too busy" to do. I'm learning to be patient with myself and allow myself the time I need to grieve. I have always felt like I needed to be strong and pull myself together for everyone, but I'm realizing that I need to take the time for myself to grieve. It doesn't mean I'm weak. Sometimes all I need is a good cry and then I'm able to pull myself together to get through the rest of the day.

As for my dad, he went back to work a couple of weeks ago. He's like me (or I'm like him); staying busy is how we get by. Fortunately (or maybe unfortunately, depending on how you look at it, ha ha) my sister and I live close by. Her kids are over there often while she works and we go over often and invite him out. He has made it his Sunday tradition to visit Mom's grave after church each week. This past Sunday I went with him. He leaves her flowers in his Big Gulp cups, since they haven't installed the vase yet (I say that that is how Mom knows it's from him; anyone who knows Dad knows that he likes his Big Gulps). The cemetery had also been taking their sweet time on getting Mom's temporary marker in, so Dad took the liberty of making one himself. As it turned out, they finally got her marker in, but I like Dad's better.

The sadness in losing my mom will never go away; I don't expect it to. I will always think about what she's missing while I'm raising her grandbabies; about what they are missing by not having their grandma in their life; about what we all are missing by not having her here. I only hope that the sad moments will become less and less as time begins to heal my wounded heart.

Thursday, August 24, 2017

Mom's Eulogy

I mentioned in a previous post that Mom had started talking about what she'd want at her funeral years before she was diagnosed. She named a family friend from church, Dave Robinson, as a good person to give a eulogy. He had given the eulogy for our good friend, Travis Alexander. I think it may have been after that when she mentioned how well spoken Dave was and how he'd be great at this. We asked Dave if he'd do the job and he was very humbled and honored (and I think very surprised) by our request. We couldn't have asked a better man to do the job. He came and sat with our family for an evening while we talked and shared stories of Mom, he taking notes on his laptop. He combined his words from our interviews with my writing and we also found a precious letter written from my mom to my dad, which he used at the end.

I haven't ever mentioned this before...I guess because I'm unsure if I can really succeed with it and I don't want to embarrass myself, but I actually started writing a book of our journey, starting at the very beginning of when Mom and Dad met. I started writing about a year ago and made it to about 50 pages, but I took a break when life got a little too crazy. I sent all that I had written over to Dave, just to help him fill in the gaps of anything he wanted to mention in his eulogy. He ended up cutting and pasting some of it, preserving the way I told the story. I love that he combined some of my mom's own words, taken from the letter and also from her journal that we had recently found. It turned out to be a beautiful eulogy and some family members, as well as friends who were unable to attend her funeral, have asked for a copy. So here it is! I hope you enjoy reading about my beautiful mother.

Deana Rae Alves

Deana Rae Alves was born Deana Rae Harrington to Beverley and Frederick Harrington on May 11, 1961 at Riverside Community Hospital. She was supposed to be Dean Raymond so that the room situation would work out at home, but, surprise, it was a girl and Dean Raymond was now to be Deana Rae. Deana was the youngest of 5 children after Michael, Ellen, Claudia and Jeff. She grew up right here in Glen Avon with many fond memories of her childhood on Gordon Way. She used to like to pick up gum off the street and recalled many rides and walks to the liquor store to buy penny candy, frozen milk shakes and sodas. There was a store called Bramletts where she would go to buy gifts for her family. Deana recalled having two great talents as a kid: choking on food and spilling her milk at dinner. She fondly remembered always having cats running around the house and loved her special dog named fudgy. She attended Glen Avon Elementary as well as Jurupa Junior High School. She was a good student with perfect attendance landing her name on a school plaque…she also became the school spelling bee champion.

One childhood story that stood out to her is shared in her own words: “I believe it was the spring of 1970, only a few days before my ninth birthday. My big sister, Ellen, took me to the Riverside Plaza to shop for a present for my brother Jeff and myself (Jeff’s birthday was exactly one week before mine and he was going to be eleven). I remember we picked two shiny sirens for our bicycles. Oh, the excitement I felt at the moment. I couldn’t wait to show Jeff and hook them up to our bikes. At last he finished the installation and off we raced, each one taking turns being cops and robbers. We live on an L shaped, dead-end street which had just enough of a grade to build up some good speed. The wind raced through my hair as I pushed the button on my siren and was yelling “pull over!” The last thing I remember was looking down at the blurry asphalt. I was down. I didn’t feel the pain as the street shaved the right side off my face. Jeff looked over his shoulder as I went down and prepared to transform from robber to ambulance driver, thinking I was just faking, but, as he neared the scene he realized I wasn’t moving. Someone picked me up and took me inside, bloody face, shaking and tried to comfort me. Ellen was scared and that scared me. Dad raced through the intersection, honked his horn and didn’t stop. He quizzed me in the truck holding up fingers and asking me my name. When we got to the hospital, the emergency room nurse said it wasn’t an emergency and we would have to go to walk in. There was a 2 hour wait and Dad blew his stack yelling at the nurse and screaming for a doctor, “my daughter had an accident and doesn’t know up from down and you tell me I have to wait 2 hours??!!” The doctor came out, looked around, accepted me in, cleaned my face, did x-rays and gave me a shot.”

At age 13, she moved across town to Overland Street in Riverside. Her Dad had just remarried a woman named Edie. Moving into Edie’s house meant having three new step-brothers and a step sister. It was her step-siblings who dragged her across the street to introduce her to the gang (affectionately called the Overland Street Gang). This mischievous group of neighborhood kids met secretly behind the bushes, out of their parent’s view, as they passed around cigarettes. Deana would have never thought about touching a cigarette, but, in an effort to fit in and be “cool”, she accepted the cigarette and drew it to her lips. She tried to make it seem like she knew what she was doing, but, it was evident by her lack of inhaling the tobacco that she knew very little about smoking. As the kids talked and laughed lightheartedly, 13 year old Deana couldn’t help herself from glancing up at the boy standing across from her who introduced himself as “Buddy”. She recognized him as the boy who lived next door; she’d noticed him before. He was one year her senior, but a couple of inches shorter. Still, there was something about that short Italian boy, his olive skin, his shaggy dark hair and his light hazel eyes that drew her to him. He was quite the contrast of her own pale, freckled skin, red hair and blue eyes. Their eyes met a couple of times and it seemed like their comments to each other may have even been a little flirtatious, but, she knew a boy like him would never look twice at a girl like her. “Boys don’t like freckle-faced redheads”, she’d told herself. Little did she know, but he had a thing for redheads. Later on in life, he would tell her that he loved her freckles…that he always wanted to connect the dots.

Throughout the next couple of weeks after their first meeting, Deana would hang around outside, catching glimpses of him but never daring to initiate a full conversation with him. Sometimes she would sit on the curb and watch him play football in the street where he would take off his shirt puffing out his bare olive-skinned chest. Every now and then they would coincidentally meet in the backyard where Buddy bred rabbits. Other times he would be working in the garage and she would see him there. He pretended to be focused on whatever job he was doing but he always knew she was there and always kept cool. One day when he was hanging out in the garage with his friend DJ and having grease on his hands, Deana approached the driveway. He glanced over at her and turned to DJ saying, “Don’t just stand there, get the lady a seat”. She was both flattered and impressed with that gesture. He called her a lady. It was the first time that she felt a boy ever noticed her and treated her like the young lady that she was becoming. If she wasn’t smitten before then, she was most definitely smitten from that moment on. They spent the next couple of hours talking about everything getting to know each other better.

On July 3rd, Deana and her brother Jeff were hanging out in their backyard when Bud saw them outside and came over to join them. They engaged in some light conversation, which led to them flirting when suddenly Jeff blurted out,

“Why don’t you just kiss him already? You know you like him!”

Deana turned five different shades of red but Bud wore a grin on his face. Jeff had confirmed his hopes that the freckled faced girl-next door was crushing on him. It wasn’t long after Jeff went into the house that Bud pulled her in, wrapping his arms around her waist and kissed her, Deana kissed him back…their first kiss. Later that day, Buddy slid the homemade copper ring that he wore off his finger and onto hers asking, “Will you go steady with me?”

Over the next couple of years, their relationship continued to bloom. They spent their fair share of time making out. They would make out over the fence, in the fort, you name it they made out there. They were crazy for each other. One day, they were making out pretty heavy in the garage. Bud had her pressed up against the washing machine. The pressure must have been just too much on Deana because all of a sudden she let one slip out against the washer. The sound reverberated and she was absolutely mortified, but, Bud, in only the way he could spin things, simply laughed and told her “Hey, everyone farts.”

Later in life, Bud would share these stories with his own young kids in front of Deana. She would stand by and blush when he’d share them. He never let her forget the washing machine incident and she never stopped blushing over it.

No teenage romance goes without some drama…there were times of breakup. During one such breakup, they were outside hanging out and still flirting with each other. Somehow the conversation amongst their friends had taken a turn and Deana made the comment to Bud: “Maybe for a man, but not for a boy” Well, Bud was not about to take that shot to his ego in front of his friends. He chased her around the yard, tackled her to the ground and she landed on her shoulder. She let out a painful scream and stood up, turning her back to hide her tears as she ran back into her house. Soon Deana’s father emerged from the house yelling at him: If you ever touch my daughter again I’ll kick your ****” Deana appeared a couple of days later with a brace on her shoulder. Bud felt terrible and Deana never let him forget about it. Later on in life, when they would have a small disagreement, Bud would say to Deana: “Keep that up and I’ll give you a matching collar bone” :)

During her junior year, Deana found religion. Her brother Jeff had started going back to the LDS church of their childhood and began teaching her once again about things. She took to it and was baptized while still living on Overland next to Bud. As time rolled on, Deana would have to move with her father who got a divorce once again. She would have to finish out her senior year at Corona High School instead of Arlington HS. Now in the Church and away from Bud, she became more involved, attending church regularly with other LDS kids. Upon graduation, she met and became serious with a man named Eddie, also known as Fat Taco Eddie. They had talks about getting married, but, despite the blooming relationship, she was still calling Bud on the phone and having long conversations. Things ended abruptly with Eddie when she found out he wasn’t being totally honest with her. Later in life in the 90s, Deana ran into Fat Taco (Eddie) at the Hostess discount store. She was wearing a tight spandex outfit and Fat Taco had a really, really big wife…Deana walked out of there proudly saying to herself, “I got the good end of the stick.”

Deana continued to call and talk to Bud, but she didn’t want a relationship with him anymore because of his drinking and smoking. Bud still had feelings for her but he wasn’t ready to give up that lifestyle. Still, they saw each other now and then and continued their phone conversations. It wasn’t long before religion started to come up in their conversations. Deana would share scriptures with him and teach him things about the church she had joined. She told him about one of the fundamental beliefs of the religion; that families were meant to be together forever. This idea piqued his interest, having been the child of a broken home. One night in September of 1980, after a long night of pondering, Bud woke up and decided he was done with it. He was done with the drinking and the smoking; he was done with that lifestyle. He quit it all cold turkey and never looked back.

Not long after, Deana called again. In the course of their conversation, Bud told her that he had quit drinking and smoking and explained that he was changing his life; he didn’t want to end up like his parents. Deana replied, “I’ll be right over”. She showed up on the doorstep and they had a “heart to heart”. They talked a lot about life, they envisioned their future; their hopes and dreams. Pretty soon, the conversation included the words “one day when we're married”. There was no formal proposal, they made the decision that they wanted to spend the rest of their lives together and never looked back.

Things moved swiftly, and on November 16, 1980, Bud was baptized by his soon to be brother-in-law Jeff. It was a beautiful day for all…he had left behind the lifestyle of partying and was excited to move forward with Deana on their new forever journey together.

Things were falling into place and it was an exciting time for the young couple. Unfortunately, a wrench was thrown into their wedding plans when Bud was let go from his job at the transmission shop just six weeks before the wedding. Over lunch the next day, they began discussing their plans. They realized now they wouldn’t have the funds to put on the lavish affair they had originally been planning. The invitations had not been sent out yet, so, it was decided…forego their original plans and bump up the wedding to only two weeks away. February 28, 1981 was the day. The ceremony was small; only family and close friends were invited into the Church’s small Relief Society room. The Chapel was already reserved for another event but it didn’t matter to them. The people who mattered could all fit into that small room. They each had their best friends by their side at the altar; Jana as the maid-of-honor and Kenny as the best man. No entourage of bridesmaids and groomsmen followed; they were content with only the two friends. The ceremony was followed by a small and simple reception and then they were off to a short weekend honeymoon to Disneyland staying at the nearby Hilton hotel.

The early years of their marriage brought about very humble beginnings. Both worked hard to make ends meet. Deana worked at TG&Y…she was the breadwinner for the first couple of months. Bud spent the first month looking for work and found odd jobs. By May, he had landed a job with the phone company. After living with Bud’s mom for the first month, they were able to get a small one bedroom apartment of their own. It was furnished with secondhand furniture…they were poor, but they were happy.

Very soon after they were married, Deana discovered she was pregnant. She was just 19 years old and Bud was 20. They were young, naive and could barely make ends meet. They felt a little bit stressed about how they would support a baby. Deana was sick and throwing up, struggling to get to work each day.

One afternoon in June, Bud received a phone call at work from Deana, she had just finished with her routine prenatal appointment at the doctor’s office….she said, “I have something to tell you, We’re having twins! Bud nearly fell over in his seat. Panic sunk in; how could they afford two babies when they were barely scraping by to take care of themselves?

On a bright, sunny day in early October, Deana started having contractions, she labored for hours…this was a difficult labor. Soon it was apparent that one of the babies was in distress. They would have to perform an emergency c section and Bud was not allowed to come into the delivery room. As they wheeled her away, leaving him alone, he worried about his wife…would she be ok? Would the kids be ok? In this worried state, all his anxieties and fears slid down his cheeks in tears as he prayed to God that He would watch over his new wife and his babies. God heard his prayers and soon the doctors came to report two healthy babies, a boy and a girl, Joe and Cassandra…they marveled at the little babies in their arms. It was October 7, 1981

Life was a little rocky for the new little family. Within one year, Bud and Deana had become engaged, dealt with unemployment, gotten married and had two babies. Deana’s Mom fortunately lived just down the street from their apartment. Grandma was patient and nurturing. Deana’s relationship with her mother grew a lot during this time of her life. Eleven months later on September 11, 1982, Bud & Deana would take their two little children to the Los Angeles LDS Temple, kneel around an altar and be sealed together as a family for time and all eternity. This was a highlight of their lives…a joyous occasion never to be forgotten.

The summer of 1983 brought another round of stress for the family. Bud received a notice that they were phasing out his job at the phone company. After giving birth to the twins, Deana had to give up her job at TG&Y to take care of the babies. That very night, when Bud arrived home from work after finding out the bad news, Deana gave him a bit of good news. “Nancy Ballantyne called today and said they are looking to hire some more guys at Continental and she and George are wondering if you’d want to come work for them”. Bud didn’t know anything about tile at the time, but, with the dark cloud looming overhead about his upcoming joblessness, this news was a ray of sunshine. He was a hard worker and a quick learner. He accepted the job and ended up working there for twenty years before branching out on his own and starting his own company.

A year after this new job, Deana gave birth to another baby girl, Christina on July 10, 1984. She was another unexpected pregnancy and, by this time, the twins were three years old. This birth was much more smooth and pleasant. Deana was much more relaxed and Bud was allowed to witness the birth this time.

With the family growing and Bud’s job succeeding, they soon outgrew their apartment and moved into a small three bedroom, rental home. Later on one night, while sitting at the dinner table, Deana told Bud that she had toured a home earlier that day…they had begun the search to buy a home and Deana felt like she had located “the one”. It was a modest 1200 s.f. home with four bedrooms, two bathrooms a living room and kitchen. The back yard wasn’t huge but it would accommodate the kids nicely. Soon, the trip was made to view the house on Candlelight as a family. It needed a lot of work, but, Deana saw potential in it. Bud was not thrilled but Deana was, but he figured they would fix it up, stay in it for a year or so before they sold and upgraded to another house. Thirty years later, it is still the place called home.

Deana was the epitome of a homemaker and a good mother, she took great care of her home and the kids. She always had dinner on the table at night…very rarely eating out. She loved to bake and would make each child a cake, including Joe and Cassandra their own cakes on their shared birthday. She loved holidays and would spend time baking goodies to hand out to family and neighbors, her most famous goodie being her English toffee. She was a room mother for each of her children and present at all their events…she even became a supervisor at their school and was known as the “nice supervisor”. When it came to cleaning, Deana ran a tight ship. She took great pride in her home and every child was expected to do their part. She had a rotating chore schedule during the week and Saturdays were reserved for deep cleaning. She would blast songs from favorites like Queen dancing around with a broom sometimes grabbing the kids and making them dance with her trying to liven things up during the boring cleaning. Deana loved tending to her garden, with Bud gone many Saturdays working, she enjoyed mowing the lawns, pruning the flowers and working in the vegetable garden.

She was a penny pincher - didn’t shop for anything unless it was on sale. She would save money all year long from the family budget along with recycling for family vacations and Christmas presents. The kids would go to pic n save with the recycling money to buy Christmas presents for each other.

She was a very good driver….she was only in one little fender bender accident…in Corona at a stop light. The kids were fighting in the back seat, she let off the brake and tapped the guy in front of her. Also when she was very young she clipped a big rig.

Deana was a young Mom and grew up herself right along side her family…learning as all parents do through the ups and downs of daily life.

She would wake the kids up by singing “oh what a beautiful morning” and then saying “rise and shine”. If they didn’t get up, she would squirt them in the face with a water bottle (oh how they hated that). On one occasion, when Christina was talking back in front of her Aunt, Deana reflexively swung her hand around accidentally hitting Christina on the lip just right catching a tooth and busting open her lip…she was horrified. On another occasion, she broke a wooden spoon on Joe’s butt. She would use a wooden spoon on him because it would hurt her to use her hand. That spoon remained in the kitchen for years to come. She would play Nintendo Dr. Mario with Joe and also enjoy her time in Scouts with him. She would cherish the time Joe took her on a date to the Museum of Tolerance when he was 20. Deana would always feed Joe’s ego telling him how handsome he was and that the only person more handsome than him was his Dad. She hated when Bud would teach Joe “code words” while on the job…these code words were about girls and it just bugged her…the boys just loved bugging her.

She loved old black and white movies and musicals…loved to watch the Turner Classic Movie Channel. She loved movies like the Sound of Music, the Ten Commandment and West Side Story. She would sing the songs and then try to make her own corny songs out of them. Her All-Time favorite was An Affair to Remember, she always cried at the ending.

Never once did the kids see their parents fight…just little occasional disagreements.
Every day Dad kissed Mom goodbye in the morning and then kissed her when he got home from work. Sometimes he would grab her butt and make out in the kitchen. When the kids would say “oooo” Mom would say back “at least you know your parents love each other”.

Deana started taking night classes while the kids were in school and went for an early childhood degree because she wanted to be a school teacher. She didn’t make it to a bachelors to be a kindergarten teacher but did get her early childhood associates degree and worked in the head start program. She gained many friends while working as a head start teacher.

Deana made sure that her family was raised in the Church of Jesus Christ of Latter-Day Saints. She would make sure everyone was always up each Sunday and at Church in this very building, the 44th St. building (that her father helped to build). She and Bud participated in the church by accepting callings. Bishop Frank Vargas remembers when she was called to be the Young Women’s President, she felt very inadequate but went on to be a wonderful leader that all the young women loved.

Time marched on and the kids all married bringing beautiful in-laws and grandchildren onto the scene. Time and aging also brought an unexpected twist into her life. On March 7, 2012, Deana was diagnosed with Semantic Dementia - A Rare Kind of Dementia under the Frontal Temporal Lobe…this coming after an exhausting two years of going to all kinds of specialists trying to figure things out.

The next five years would be a difficult and challenging time. Watching Deana fade away slowly over time was painful, it was not fair. Why was she of all people struck with this robber of all things normal? She was too young to have something like this strike her. Christina said it best recently in a heart wrenching post:

“This morning at 6:40 am, my mommy took her last breath after being comatose for 3 days. She was 56 years old. Dementia is a monster that began robbing me of my mother piece by piece before she was even 50 years old. Nobody can know how horrendous it is to watch your loved one deteriorate before your eyes until you witness it yourself. Life isn't fair and makes no sense at times, but Heavenly Father never promised it would be. Stolen from us was a loving mother and grandmother, devoted wife, exceptional preschool teacher, and compassionate friend. Mama, I miss you more than words can express. You didn't deserve this premature ending. I will carry you in my heart now and forever.”

Deana Rae Alves passed away on July 29th 2017 in the presence of all of her family in her own home…the little home on Candlelight.

Deana’s short life was full and rewarding wrapped inside a romance many of us only dream of…in her own words:

“I recall when we first saw each other. I was thirteen and your were fourteen. I don’t think we were even introduced, you were just there. Sitting on the grass in your oversized jacket, puffing on a cigarette. The young hoodlum! For some strange reason I felt like I was supposed to impress you by acting like a silly, flirtatious girl. I think I succeeded only in making a fool of myself.

A few months later, I became the girl next door. Every day filled with anxiety, hoping to see you smile at me as I got home from school. I hoped my step-brothers would bring you around so I could see you, never thinking you would like me too.

Soon we began to talk to each other. I would watch you work on lawnmower engines in your garage. too embarrassed to let you know I was crazy about you for fear you would think I was ugly and didn’t like me. Fact it-it’s not easy growing up read-haired and freckled!

I remember one time as I watched you in your garage you turned to D.J. and said, “Don’t just stand there, pull up a seat for the lady!” Wow! Was my fourteen year old heart a flutter. Then came the moment of truth. My brother Jeff blurted out, “Why don’t you just tell him you like him.” I wanted to crawl in a hole and die!

What a rocky romance. For two years, off and on, off and on. It finally ended in the summer of ’77. We buried our feelings for each other over the next three years. Occasionally they would resurface only for me to run away from them.

Our lives were quite different. Even though I had strong feelings for you I never saw you as the marrying kind. Sure, we kidded around about it when we were young, but, who really thought we would get married one day.

I dated other guys and went back to church while you smoked and partied. Then one day you gave it all up and there I was, ready to be serious with you.

Through all our arguments and bad times I never regretted the day I said, “I do”. We have both grown and matured but we’ve always been able to compromise, which is why our love grows stronger. You have been a wonderful husband. Loving, giving and supportive. Here are a few lines you dedicated to me:

If the sun refused to shine, I would still be loving you. When mountains crumble to the sea, there will still be you and me. And so today my world it smiles. Your hand in mine, we walk the miles. Thanks to you it will be done, for you to me are the only one! All my love eternally, your wife, Deana.

Monday, August 21, 2017

The Last Week

I remember a conversation my dad and I had a few months ago. Somehow we got onto the subject of when that time would come that Mom would pass away; I don't know how it came up, but when we were talking about people coming to the funeral, dad said "There won't be a lot of people there, nobody's gonna come."

I felt sad that my dad felt this way. I don't think he said it because Mom was never loved. I think he said it because he felt like she was forgotten. Dementia can be a very lonely road. The very sad truth is that a lot of people stop calling and visiting once a person is diagnosed with this disease. I think there are many reasons for it. Sometimes people just don't know what to say or how to act. Maybe they didn't know if visiting was appropriate. Maybe they thought there was no sense in visiting someone who couldn't remember them. Maybe they just wanted to remember her the way she was. It's also a very long, drawn out disease and for everyone who is not living it everyday, life goes on. Everyone has their own hardships that they are dealing with and we each have our own lives and families to focus on. Whatever the case may be, it is still hard for the people who are here with her, living this disease and mourning the loss day in and day out. There are many times of loneliness and wondering if people care. I'm not writing any of this to shame or guilt anyone; I don't want anyone reading it to feel that way. Grief is a very personal thing.

During the last week of Mom's life, we let friends and family members know of the situation and opened the door for anyone to come visit. I think that Dad was very surprised by the response that we received. Mom always had a steady flow of visitors; there was always someone by her side. I can say for myself, that these visits are what got us through what was one of the hardest weeks of our lives. We felt so much love for us and for my mom. Tears were shed but sweet memories were also shared and beautiful moments were witnessed. We had people show up who have been here regularly, who haven't been here regularly; some came from out of town. My dad asked me to take pictures of every person who came to visit Mom, so I'm sharing them on this post.

One of Mom's dearest friends from high school, Cheryl, came down almost as soon as she heard the news. Cheryl has kept in touch over the years and has been calling to check in on Mom. She has been such a concerned and loving friend. She lives in Northern California and as soon as I made the call to her that Mom had taken a turn, she made arrangements to make a visit. She had no vacation time left, but that didn't stop her. She spent all afternoon on Saturday driving down, arriving to her mother's house late in the evening. She spent all morning until late afternoon on Sunday with Mom before turning back around and driving back home. Fortunately for Cheryl, Mom was still awake and even walking around (this was one week before she passed). She was able to sit with her, talk to her and love on her. A very sweet thing happened when Cheryl was there. She was sitting by Mom's bedside as Mom napped and her hand came out from under the covers. She grabbed Cheryl's hand and very slowly brought it back under the covers, holding tight and snuggling it against her heart. (This happened with some other people over the next few days, but Cheryl was the first). This is just my own personal belief, but I believe that in that last week of her life, Mom was aware of who was with her. I think her spirit knew each person that was there and although unable to communicate it verbally, she communicated it through touch. How grateful I am that her dear friend made that last visit to her. (Cheryl doesn't like her pictures online, but she approved this older photo of them together, taken the year Mom was diagnosed, 2012).

Every one of Mom's caregivers paid her a visit-both past and present. By Monday, we had relieved all caregivers of their duty. Yet, they still came to visit and one came almost every single day, staying throughout most of the day and continuing to care for her throughout the process. Some of her volunteer caregivers (who were "relieved" over a year ago, when Mom was transitioned into diapers) also came to visit. They all formed very sweet relationships with Mom throughout their time of caring for her and they grew to love Mom very much. (I don't know what happened to the picture of her caregiver, Linda, but she was there too. Maybe we forgot to get a picture?)

Every one of Mom's siblings came to visit her as well. The local siblings came a few times. Her brother, Jeff, flew in from Pennsylvania Thursday afternoon. We weren't sure if he was going to make it in time, but Mom held on for him.

Some of her siblings-in-law came also. My Aunt Peggy (dad's sister) flew in on Friday and my Aunt Sharon (another of dad's sisters) was with us the whole week. Uncle Tim, (Aunt Sharon's husband) was also there with us a lot. Aunt Sharon actually spent a few nights with us; she was by our side almost the entire week and I will forever be thankful for that. She is also an RN, so it was very comforting to have her there. It was comforting to have all of our family there! A couple of my cousins also came to say good-bye.

Of course all of her grandkids were with her all week. My daughter, Maurina, flew in from Colorado on Wednesday. Most of the time, they all slept over; they didn't want to leave grandma. I think they found comfort in being together. There were many tears shed but also sweet moments as they cuddled with grandma, rubbed her back and arms and gave her kisses. Hard as it was, I'm glad that they were able to be with her and I know they wouldn't have wanted it any other way. I'm sure Mom was comforted to have her sweet grandbabies by her side.

So many other friends and neighbors came to visit. I don't think they'll ever know how much that meant to us! I really do believe that Mom knew they were all there. We joked that that was probably the reason why she took so long to leave (she lasted 2-3 days longer than the nurse Tuesday night thought she would); she was enjoying being loved on by so many. There are a couple of friends that I forgot to get a photo of and I've been kicking myself ever since. One was her dear friend, Janna Marcroft, whom she's known for over 30 years! (Sorry we missed your picture Janna!!) We also missed our family friend, Carl Harris, who came to visit and left us with prayers that we greatly needed. Hopefully that's all I'm missing (and Linda). So sorry! I was so thankful for Danielle (caregiver) and for my Aunt Peggy, who took over with the picture taking. I was so emotional at times that I kind of forgot.

Of course her children and husband were by her side. On one day (I can't remember if it was Wednesday or Thursday), we had a little beauty day. I was finally able to groom her toenails and I painted them cute for her. I groomed her fingernails as well and Danielle painted them. We put a little make-up on her (just some eyebrows, eyeshadow and lipstick) because we all know that Mom would've wanted to look her best for her vistors. Here are a few pictures I wanted to include.

Dad got in the pedicure spirit and my sister-in-law, Natalie, painted his toenails! Ha ha. It helped to lighten the mood.

I know there were many others who would've loved to come visit but were unable to. We have felt everyone's love through the dozens of cards, flowers, foundation donations, gifts, meals, attendance at her funeral, etc. When Mom's time did come, people were there to love on her. Her funeral was packed; I didn't see any empty seats in the chapel. Friends and family members traveled from far just to be there; people we didn't even give thought to coming! It was a testament to me of the many people who do love and care about her and the rest of our family as well. Thank you to every single one of you who have been here for us through this difficult time.