It's been exactly 4 years, 1 month and 1 week since mom's diagnosis of semantic dementia. I still remember it like it was yesterday. I had been anxiously waiting all day to talk to dad about how mom's visit at UCLA went. When I called him for a report that evening, he responded that he'd rather not talk about it over the phone and suggested that I come over a little later to talk. My stomach was in knots, a mixture of anxiousness and hesitation to hear the results, but also hope that they had figured out what was going on with mom-and were able to help her get better. I helped my husband tuck the kids in bed and raced over my dad's house. Though we suspected (due to our research on her symptoms) that there was something affecting the frontotemporal region of her brain, nothing could have prepared me for the news I was about to hear.
I remember walking in the front door and meeting my dad in the kitchen where he sat at the table. He got up and busied himself with a few things while I stood nervously nearby, waiting for him to spit it out.
"So?" I asked. "What did they say?"
The image of my dad revealing the news will forever be seared into my memory.
"Well," he started, picking up a pamphlet from the table beside him. "There's good news and there's bad news," he said, looking down at the pamphlet. "The good news is that they are pretty sure they figured out what is wrong with her. The bad news is that they say she has a brain disease called semantic dementia. And, it's not going to get any better."
His eyes wouldn't meet mine when he said it. He looked down at the floor, tears welling in his eyes as he fought the downward frown of his mouth in an effort to keep a brave front. He dabbed at the corner of his and then finally brought his eyes to meet mine; I stared back at him speechless.
Semantic dementia. Dementia. The words played over and over in my mind. What does that mean? I didn't understand. It couldn't have been dementia. It was damage as a result of her surgery, and it was supposed to get better.
Dad handed me the pamphlet and recounted their day at UCLA: the tests, the questions, the explanations from the doctor, the plan for the next steps. I felt confused and was left with many questions. I went home that night and over the next several weeks I scoured the internet for any information on FTD, specifically semantic dementia. Every medical article I read left me feeling more and more helpless, afraid and full of even more questions. Additionally, I wasn't ready yet to tell my dad everything I was learning-and he wasn't ready to hear it- because the outlook was bleak. Words and phrases such as "incontinence" and "difficulty swallowing" and "inability to speak" continually appeared over and over in my searches. I remember feeling so overwhelmed and wanting someone to talk to-someone who had been through this themselves. That search, however, was much more difficult. Aside from a yahoo support group about PPA (a variant of FTD that closely resembles SD), my search came up empty. There were plenty of people talking about Alzheimer's, but I couldn't find anyone writing or opening up about FTD.
In my state of loneliness, I decided it might be therapeutic for me to write down what was happening and how I was feeling. It was an outlet for me and also a way to track mom's progression. I wrote it in the form of a blog (this blog) but had it set to private; it was only for my eyes. A short time later, however, I mentioned to my sister about my writings and I sent her an invitation to read my private blog. She was relieved to see it written out in a way that people could easily understand what was going on with mom and she asked my permission to share it with a few of her friends. At that point, few people knew of my mom's diagnosis and it was really difficult to articulate and explain to people what that meant. Along with that, several friends and family members were put off by mom's odd behavior. After talking with my sister, I decided to send my blog along to family members to read so they could gain an understanding and empathy for what mom was going through (note: by the time mom had received a diagnosis, she did not understand what the word dementia meant).
My family thanked me for opening up and sharing and were sympathetic to what was happening. Furthermore, they were able to see my mom in a different light; rather than being put off by her oddities, they began to understand that her behavior was beyond her control and they made more efforts to be kind and understanding.
Shortly after that, my sister sent my blog to a good friend of hers, and this friend messaged me and said,
"You have a true talent for writing. Have you considered opening up this blog for others to read? You could probably help a lot of other people."
The thought hadn't crossed my mind; I didn't want to do anything to further my dad's pain or make him uncomfortable. Yet, I couldn't forget the feeling of isolation and loneliness I felt those months after mom's diagnosis; a feeling that nobody around me understood the heartache I was going through. I thought on the idea for a couple of weeks before mustering up enough courage to talk to my dad. With his blessing, I opened up my blog to share with other people. Over the [nearly] past 4 years, I have had many people email and reach out to me to thank me for writing while sharing their own experiences of their mom/dad/brother/grandma/etc with FTD. It has been such a blessing to me to connect with all of these people. There are moments I have doubted myself for writing, but every time I receive a new message of gratitude from someone else across the globe who is struggling like me, I know I am doing the right thing. By sharing their stories with me, it helps me to know that I am not alone in this either. There are other people out there who understand exactly the heartache my family is experiencing.
That was a bit of a long introduction to what this post is really about. But the past few days have brought up a lot of past memories and recollections and I feel it's an important background for what I'm going to write about next.
Several months ago, a friend sent me a link to an interview in Redbook magazine with Kimberly Williams-Paisley (who you all know as the adorable bride on the screen hit "Father of the Bride"...one of my and my dad's favorite movies!!) It was a heartwrenching interview, actually written a few years ago, about Kimberly's mother's disease: FTD (specifically, primary progressive aphasia, which is the sister disease to my mom's semantic dementia). As I read her interview, I felt a connection to this person, who I had never met. I could relate to so much of what she said and at times I felt like I was reading something that I had written myself! It was an indescribable feeling to know that I wasn't alone in what I was dealing with and the personal battles I was facing. I thought to myself, finally! Someone who know exactly what I am going through and that could relate to me! (nevermind that she's a celebrity who I'll never meet, ha ha).
After a little more research, I learned that she was a writing a book-a memoir about her family's journey with this disease. I haven't admitted this on my blog before...but I actually started writing my own memoir of our family's journey a couple of years ago, using excerpts of my blog, after the promptings and encouragement of several readers and family members (it's a long work in progress). I couldn't wait to read her book. As soon as I learned of the release date and preorders were made available, I ordered a copy of her book, entitled: "Where The Light Gets In." The day the book was released, it arrived on my doorstep.
I have spent the past few days engrossed in this book; every quiet moment I could sneak in, I buried my nose in her words. There were parts where I literally laughed out loud and exclaimed to my husband "Jeff, this is just like mom!" And other parts where I had to hold back the tears (I couldn't have any other parents at swim practice see tears sliding down my cheeks!). I could relate to all of the emotions she wrote about in her journey: the fear, the anger, the denial, the acceptance of her mom (in fact, one section of the book reminded me of the blog post I wrote for another site, about learning to love my mom again). I could especially relate to Kimberly's sister, Ashley, who like me, bore the burden of knowledge from reading and educating herself on what was to come, while other family members weren't quite ready to hear it. I believe Ashley and I were even on the same yahoo ppa support group!
I appreciate that Kimberly put it all out there; she didn't hold back. I know from experience how vulnerable you become when you open up and share with the world, especially not knowing how people will receive it. But I appreciate that she did this. Her words have helped me and I know they have/will help so many others who are going through this. (And, she's inspired me to start writing again!)
I wish this book would have been available the minute I learned of my mom's disease. It would've been such a comfort to me in those lonely times to know that I was, in fact, not alone in what I was facing. I am sharing and recommending this book to all of my readers: whether you are just starting out in your journey, whether you find yourselves in the later stages, or even if you are a reader not stricken by this tragedy known as dementia, Kimberly's book was an uplifting book and sent an inspiring message of family and unconditional love.
So, if you haven't gotten your copy yet, go buy it. In fact, go buy it on Amazon. And when you do, please take 20 seconds to register yourself on Amazon Smile as your gateway to enter Amazon shopping (bookmark it!) You can select The DEANA Foundation as your favorite charity and every time you shop, the foundation will receive a small portion of what you spend. It is such an easy and practically effortless way that you can help the foundation, in turn helping families affected by dementia.