Welcome To The Club We Never Wanted To Belong To

I am sure that most of us have known someone who has lost their spouse. It’s hard to put yourself in those shoes and know how the loss of the love of your life makes one feel. . . but now all of us know, because we have unceremoniously been initiated as members of that club. It matters not how we got here. We are all here, like or not. I am here because my husband, Brian, died on April 1, 2021 from complications of Parkinson’s Disease. Many of you probably know someone with Parkinson’s. It is ranked as one of the worst incurable neurological diseases, right behind ALS, with Alzheimer’s following close behind in third place. After discovering a slight tremor in his right hand, Brian was diagnosed with PD in 2007. Together we battled this disease, which Brian described as “inscidious and cruel,” for 13 years. For the first eight years his symptoms were minimal and almost unnoticeable, so we were able to go about our lives in a pretty normal manner, with little disruption from the disease. In fact, we could almost ignore it. However, in 2017, it seemed to ramp up its relentless path of destruction on his body, and eventually his mind as well, and our lives changed drastically. Throughout our Parkinson’s journey together, I was always his Care Partner, but, as the disease continued it steady progression, my role gradually changed to Caregiver, rather than Care Partner. When this happened, it became increasingly difficult for the two of us to navigate the fine line between caregiver and “patient,” and the role that we cherished most, husband and wife. By the time we found ourselves trapped in the Pandemic in March of 2020, I had become a 24/7 caregiver, all the while watching helplessly as Brian’s difficulties increased on almost every front: his gait froze and falls became the norm rather than the exception; tremors returned; he grasped for words; his speech became slurred and soft; vivid hallucinations tormented him daily; and, probably worst of all, Lewy Body Dementia took up residence in that wonderful brain of his making everything that much more difficult. As we got deeper and deeper into the Pandemic, he lost all of the things that were helping to delay the disease; his Rock Steady Boxing class; therapies; social engagements; time spent with friends; our date nights together.

Then, just as the Pandemic seemed to be turning a corner and we were beginning to see light at the end of the tunnel, Parkinson’s played its final hand, and a series of falls injured Brian’s back and put him in the hospital. While he was there he developed aspiration pneumonia, a common complication of Parkinson’s, and it cost him his life. He made his last trip home in an ambulance and was on Hospice for two days, and left us early on April 1, with me by his side, holding his hand, watching him take his final breath and slip away forever. If you have ever been a caregiver for someone who you love, especially 24/7 caregiving over an extended period of time, you can understand what happened to me when suddenly, all of what had been my life for so many years — my role, my reason for getting up in the morning, my sole purpose in life — literally disappeared in a heartbeat. I felt as if I’d hit a brick wall, and my world, as I knew it, quickly fell apart.

Grieving is tough. It traps you. If you have lost a loved one, you know this. It descends on you like a thick fog and tries to smother your very soul. Each person’s grief journey is unique, and there is no one way to deal with the pain, sadness and loneliness that accompanies the walk down the path towards healing. After Brian died, it was difficult for me to explain to others how his death made me feel. I have always turned to writing to get me through tough times, and when I sat down to write about how I felt, the words came tumbling out of my head. Everyone needs to find their own way to cope with grief, their own path on the grief journey. Trying to ignore grief, pushing away emotions, or stuffing the pain and anguish inside just enough to get through the day does not work, especially for me. Research has shown that doing this just makes our grief journey longer. While it was difficult to let myself mourn, cry (sometimes loudly and for long periods of time), and authentically express my emotions, I came to accept that it is was the norm for me at that point in my life. And now, here I am, almost 7 months out from his death, and have found a way to share my story in the hopes that doing so can help others who, like myself, find themselves staring down the loss of a love and the reality of going forward in life alone. Perhaps Zig Ziglar says it best: “Grief is the recognition that you’ve lost someone you love. It’s the price you pay for loving someone, because if there were no love, there’d be no grief.”

So, I invite you to join me on this journey through uncharted waters, sharing our tears, our sadness, our emptiness, and our possibilities, as we make our way through the darkness of grief and into the light of a new life, with new hopes and new possibilities, all the while keeping the love we have for our spouse tucked away in that special place in our heart that has always been reserved just for them.

“If you are looking for a happy ending and can’t find one, start a new beginning instead.” (Author unknown)

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