Tonight I am a weepy mess. I can’t even rationalize why. There are so many emotions. I took my husband to a simple doctor’s appointment to draw blood this morning. I looked over, and he had tremors. It was a new symptom. One I had not noticed before. His head was shaking front to back. It was subtle. With COVID-19, I’ve stayed six feet away. The visits have been limited. My abilities to assess his declines have been stunted. It hit me. He’s declining. I remember reading online about his gene mutation on the MAPT gene. This gene mutation, while not common, can induce Parkinsonism symptoms. His right arm has been a worry for well over a year. It hangs at an awkward right angle. His muscle stiffness now makes sense. He’s never been particularly flexible, but his movements are labored.
With every new symptom, I grieve. It hits me that this is real. He won’t survive this devastating disease.
Shortly after his appointment, I walk into the local grocery. There are sunflowers. Not sure I’ve ever noticed sunflowers for sale before. It was the first and only flowers that I remember my husband buying me. It was when we first started dating. I choke back tears, again. Yet, I buy the flowers, trim the stems, and display them in the same vase from long ago. This brings me peace and tremendous grief simultaneously.
As I study the sunflowers, the deepest emotions emerge. It’s a conundrum of thoughts that I need to rationalize. For a while now, I have not felt like I have a husband. Legally, of course, I am still married. But, at some point during our FTD journey, my role shifted from spouse to caretaker. It happened slowly. There was an internal battle where I fought vigorously to hold on to the relationship that began many years prior. But, releasing the expectations bestowed upon my spouse as a spouse freed me of so much frustration. It was necessary for self-preservation. It was intentional grief. Mourn the loss of my spouse, now. Mourn the loss of the human, later.
Marriage is more than a piece of paper. It’s more than a ring on your finger. It’s a partnership. It’s the person with whom you want to share life’s daily triumphs and sorrows. It’s your other half that understands the inside jokes. It’s the human that can look at your face and know what kind of day you’ve had. It’s the being that you bounce ideas off to calm your chaotic thoughts. It’s the soul willing to plunger the toilet for the third time in a week. It’s the individual that holds you and makes everything in your world feel right. It’s the friend that brings you sunflowers.
When you let the expectations of the spousal role go, what’s left is love. It’s a profound love to care for the human that has been in your life for decades. Love for the father of your children. Love for the person that can no longer care for himself. Love for the man that doesn’t want to be dying.
The grief continues and slaps you across the face when you least expect it. Although many will not understand, my husband is gone. But, the deepest love for the human that’s my spouse remains. Sunflowers represent loyalty and longevity. I’ll love until the end, but I hate what this disease takes along the way.