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.

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

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!

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.