After my husband and his comforting sleep companion/ our dog are asleep, most nights I grab my laptop and try to focus and gather my thoughts. Usually this form of "me time" is accompanied by a healthy pour of red wine, essential oil candles, and a not-yet-ready-for-bed kid, as well as music that is regularly found on playlists that have the words chill, folk, indie, Americana, or acoustic. Some nights, my daughter adamantly states her preference to listen to Taylor Swift or a mix of TS and Selena Gomez these days, and lately I've surprised myself with adding the new Harry Styles album to the mix.
And now, I have these lyrics in my head: I was thinking about who you are
Your delicate point of view,
I was thinking about you.
Over the last few months, there were many nights I was able to express my feelings through my words, but as of late, I’ve spent way too many minutes staring at this screen trying to sort through the dozens of thoughts that have been running around in my mind. There have been some moments where I’ve come up with blog titles or a few sentences, but unfortunately nothing more has made its way outside of my head.
Some of these thoughts are ones that have been there for a very long time, along with many questions and unexpressed emotions that have seemingly remained inside of me, sometimes voiced at times to close confidantes.
After mentioning this struggle to one of my best friends, she shared her wise thoughts, "It sounds (to me) like you just might be dealing with a little bit of burnout." I think she is absolutely right. She also offered me great advice to step back from this blog if doing it doesn't have the kind of therapeutic value that I initially found in it.
Her words spoke to me and led me to think about why I find it so important to be more open about this journey of ours.
So why is so important to me?
Maybe it’s because I am a very empathetic person, and through this journey, have had my eyes opened to the universal struggles that people suffer physically, mentally, and emotionally from rare and/or regularly misunderstood diseases and want to do more to help this large community, which includes my husband.
And maybe it’s because I’ve been mentally drained by our own diagnosis chase and search for support and know all too well the stress that families, loved ones, and caregivers face, and hope I can help raise awareness and inspire some changes.
But despite knowing what’s on my mind and in my heart, I still find it difficult to really explain what this whole rollercoaster of a journey has been like for me, for him, and for us as a family. One day the words will come, but for now I’ll share of my the thoughts I’ve had.
I think the first thought that I'll share is always on my mind: My husband is the one who suffers the most.
This thought runs through my mind at least a dozen times a day as I think about all of the struggles that he had endured over the years, while still maintaining some sort of awareness and trying to cope with debilitating pain and Parkinsonism-like symptoms. There is so much more to say about the depth of his individual struggles, but over the last few weeks I've learned that now isn't the time for me to share all of his side of the story as it seems like we may still be trying to figure some of it out ourselves.
Another reason why I feel the need to pull back a bit is because I'm really starting to wonder: Is the Behavioral-variant FTD diagnosis is accurate, or has my gut instinct always been right and the monster that we've been battling for nearly eight years is Lewy Body Dementia.
I was going to hold back saying this, but mentioning this allows me to be more open about a this huge internal struggle of mine, especially after sharing our story and the FTD diagnosis that we received two-and-a-half years ago.
But this is actually a big part of our story: The struggles that my husband faces as the patient, and the ones that I endure as his spouse, caregiver, and advocate. And the never-ending journey that we've been on with very little support or guidance due to the unknowns of diseases such as Frontotemporal Degeneration and Lewy Body Dementia.
Is it FTD? Is it Lewy Body? It it a mixed form of dementia and possibly a combination of two? Or could this be something else entirely, which at this point I doubt? The difficult truth that haunts me at times is that we just may not get the answer until his brain can be autopsied, as was the case for Robin Williams, who finally received the diagnosis of Lewy Body Dementia through brain autopsy despite having doctors agree that his autopsy revealed the “worse pathologies they had seen.”
Maybe it's better for my husband If there isn’t a answer or diagnosis?
Maybe as hard as it's been for me to not know for sure, maybe it's better for him?
I don't know, but lately I've been really trying to step back and let life guide me. In doing so, I'll fully admit that there are many times throughout the day where I find myself thinking just how crazy all of this has been, and continues to be. My husband and I appropriately termed this journey as a MINDF*CK many years ago, and it's still the only word I have to describe what this has been like for us, and continues to be.
So while I’d like to keep sharing our journey as a way to raise awareness for these extremely difficult diseases, I hope you understand that I am really still trying to figure a lot of things out. I have felt incredibly alone in this journey at times, but so has my husband, probably even more so than I even realize. But being able to share some of it through this blog and connect with others through social media groups has given me some of the support and guidance that I’ve always sought to find.
He recently said to me, "No one really knows what's going on other than me and you." He's absolutely right, and I hope that one day I can be even more open about this journey and shed light on how devastating these diseases are, especially for my husband and all of those who suffer like him who are most affected.
When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.
Fred Rogers