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  • Victor Milani

Brotherly Love — An Editorial From Mark Wentz

Updated: Apr 27, 2020

As we prepare to move into another month of uncertainties of what the future holds for us as individuals, as a family, and as a country because of the coronavirus pandemic, I find the vast majority of my own anxieties revolving around my younger brother, Scott, age 59. Scott, who has Downs syndrome, as well as other physical disabilities and abnormalities, had been under mine and my wife’s care since 2000.

All that changed in October 2017, when I suddenly and unexpectedly loss my wife, Geri. Now, as Scott’s sole caregiver, I found myself navigating uncharted waters. While I had mastered the daily tasks of grooming and bathing him, and making sure he ate and had the things he needed, including all of the love he required and deserved, I was not prepared as to how to protect his dignity when the dementia he was now diagnosed with, was trying to rob him of his. Things worsened over the next few months as Scott’s health began to rapidly decline. In August 2018, he fell victim to the first of two bouts of aspirational pneumonia he would be subjected to within a one-year period. His treatment included having to be placed into a medically induced coma for more than two weeks and then endure months of physical, occupational, and speech therapy. In between these two bouts of pneumonia and therapy, Scott returned home to live with me. He was also introduced at this time to someone new who had come into my life, Kimberly.

Kim cared for Scott with the same love and compassion that Geri had for all those years before. They quickly became the best of friends and Scott loved the time she spent with him. All was going well until Scott contracted the second bout of aspirational pneumonia. This round was worse than the first and I was left with no alternative other than to have him placed into long-term care, something I had resisted for years. After consulting with his doctors and speaking with counselors and family members, I made the very tough decision to place Scott into the memory care unit at the Avenue of Macedonia. I quickly came to the realization he was better cared for there than I could care for him at home. And, better yet, Scott adjusted quickly to his new surroundings. With a sense of relief, I found time for myself while still maintaining a close relationship with Scott. Kim and I visited him every day, oftentimes several times a day. All seemed positive until we were abruptly confronted with the newest challenge for family caregivers, and undoubtedly, the most serious— the novel coronavirus.

Covid-19 changed everything! Suddenly, family caregivers were prevented from entering the facility to see and interact with loved ones. We were unable to visit with them, speak with them, and hug them hello or kiss our loved ones goodbye. We are now dependent on a weekly update phone call and an occasional cellphone photo taken by a staff member, or a drive-by in the car and a wave. Unfortunately, Scott’s mental and physical condition doesn’t even allow for some of the small, permittable, safe distancing practices they have put in place. I worry, given his lack of mental acuity and mid-level dementia, that he may come to believe he has been abandoned or, worse yet, may simply forget who we are through no fault of his or ours. I cannot think of a worse thing than to love someone so unconditionally and then come to the realization they cannot love you back because they no longer recognize you. As this pandemic works its way through our lives, I fear for the worse and hope for the best, but most of all, I miss being with my brother, whom I love so very dearly.

-Written by Mark Wentz

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