In the last two posts, I opened up about how our family has been greatly impacted by my husband's chronic illness and the Covid pandemic, that began a few months following a diagnosis. But I’m not sure if I’ve really explained what it’s been like for our family to live through this challenging time while facing a progressive and incurable disease.
I really want to share more of this journey as a way to show our gratitude to everyone who has ever supported us with their generosity, kindness, friendship, and prayers. It is also a way that I can raise awareness for Frontotemporal Degeneration (FTD) and other neurocognitive disorders, and advocate for those who have face these diseases and are deserving of the unconditional support from those of us who can show our love by fighting for them.
I know many have asked me, ”How’s your husband?”, with lots of others wondering how he’s been since first learning of his health issues or hearing the diagnosis, especially as we’ve been distanced from others over the years, much like everyone else.
Over the past two years, I've shared updates with friends of ours through texts, emails, and phone calls when they've asked about my husband. With a few friends that I've gotten to see in person, mostly through playdates or locally in the community, I've opened up more about our daily struggles and voiced my continued concerns. My colleagues at the hospital heard even more as we all found ourselves connecting with each other daily as the pandemic continued on. And then there was our family, especially my mom, who provided me with an outlet to let it all out every time I needed someone to call, as they listened attentively and trusted my perspective and instinct that my husband's struggles were real.
I was also extremely fortunate to find a therapist who not only understand neurological disorders and the medical field, but also made me feel safe and comfortable, enough so that I trusted her with some of my internal thoughts and struggles that I barely ever voiced aloud before. While many times I wondered if we should be switch to being friends so that I could better reciprocate the support services, I think that her natural talents in therapy as what I need now and I am lucky to have her guiding me through this challenging journey.
But if one of us ever moves away and she can no longer be my therapist, then we get to be friends and I will repay her with many bottles of wine and all my wisdom.
As I reflect back on these past two years, which have ironically coincided with the pandemic, I recognize that the ones that have provided me with the most comfort are those that I live with, but also love and care for the most: My daughter, my dog, and my husband.
The four of us faced all of the challenges of these past two years together, and also relied on one another to fight through the additional obstacles that our family has faced through this disease, which impacts my husband the most but has hurt all of us, and all of those who love him.
But despite the many difficulties, we found the beauty of slowing down and enjoying time together, especially our "Family Time" in the evenings that usually included watching Wheel of Fortune and/or "The Zoo Show" (Disney Plus's show, Secrets of the Zoo) or iPad time (for our daughter) while my husband and I watching some adult comedy show or mini-series, while our dog cuddled up next to us and chewed on a bone before falling asleep.
Family Time is something that I will always be able to remember when I think back on this time of our lives and think of it as a happy place for all of us (especially our dog).
So I guess the question, “How is your husband?" remains to be unanswered at this time, at least through this blog post. I guess I can give the answers that he's always given to those who have asked him which are "Okay" and "Fine".
I'll say this for now: He's not okay or fine. He hasn't been for awhile, really since this all began on July 16, 2014.
Maybe I should have shared this more publicly before, but when you think about the time frame of his formal diagnosis (Late 2019) and the world that we have all been living in since then, I guess we just needed the time to process it all and figure out what life looked like for us.
To be honest, I thought about it many times, while also struggling with my own bouts of loneliness and depression, but held back out of respect due to his wishes for privacy and the shared hope that the FTD diagnosis would be proven wrong with medication management.
And really, I still held onto my instinctual belief that his true diagnosis was Dementia with Lewy Bodies and not Frontotemporal Degeneration.
But with a recent appointment with a neurologist showing a concerning cognitive decline, as well as other health and financial struggles, I felt as though I had no other choice but to be more open with our struggles and stay focused on is to keeping our family together as long as we possibly can. After all, this home is our happy place and we have faced a pandemic with chronic health issues together, and more than anything, it just feels right for now.
And if I'm being completely honest, I actually cried my eyes out while laying in bed with my daughter and said a prayer asking for help.
And the following night, I felt the strength to start this blog.