I was 46 when my dad stopped talking. I know the exact day, because I went to my first game at Wrigley field and was soaking in the glow of a Cubs win when I called home. After my mom gave the phone to my dad, there was silence. She began whispering in the background, reminding him to say \u201cHappy Birthday\u201d to me and gently pressing the phone into his ear so he could hear my voice. He made a sound in the back of his throat, said \u201cHapp\u201d\u2026and trailed off. I know he said \u201cHapp\u201d and not \u201cHap\u201d because he pressed on with the \u201cpppppp\u201d sound for a long second before he gave up. I heard the phone drop and my mom came back on to let me know he had walked away. Still present in body and soul, my dad\u2019s brain \u2013 ravaged by dementia \u2013 had taken away a father\u2019s birthday wish to his daughter.<\/p>\n\n\n\n
The previous year my dad had written me a letter.\u00a0\u00a0I keep it in my beside table, slightly wrinkled from my tears, and the opening and closing of the neat tri-fold seams he made when he mailed it to me.\u00a0\u00a0By then I already knew something very awful was going on with his brain, but I did not know what.\u00a0\u00a0What I did know was that he was not the same.\u00a0\u00a0His beautiful letter was a sincere tribute a father makes to his daughter so that she will never forget how much he loves her.\u00a0\u00a0Brief and to the point, he made certain I knew how proud he was of me for my life\u2019s work (namely, raising my three sons alone).\u00a0\u00a0He reminded me of how bossy I was when I was a toddler, and that he enjoyed being the guy I bossed around.\u00a0\u00a0My dad.\u00a0\u00a0My hero.\u00a0\u00a0The letter he wrote \u2013 while clearly \u201coff\u201d and signs of what was to come \u2013 is the most treasured gift I have ever received.<\/p>\n\n\n\n
The early signs of my dad\u2019s Dementia with Lewy Bodies (DLB) were chalked up to him having a hearing disorder.\u00a0\u00a0I remember just after my 44th<\/sup>\u00a0birthday he shared with me that he had a hearing test.\u00a0\u00a0He knew something was wrong, but he was confused what it was.\u00a0\u00a0At that point, most of the conversations anyone had with him about it were medical\/factual, and so I looked at him and asked him how he was feeling about everything.\u00a0\u00a0His hazel eyes became wet and gray and he said, \u201cnot good\u201d.\u00a0\u00a0It would be well over a year before he was diagnosed, and like a puzzle taking shape, each terrible piece was snapping together.\u00a0\u00a0I believed he had a hearing disorder and hugged him (hard) and reminded him I loved him.\u00a0\u00a0In my na\u00efve state I imagined what hugging him with a hearing aid would feel like.\u00a0\u00a0I was willing and wanting to believe there was a specific and physical problem that could be identified and corrected.\u00a0\u00a0I am not so sure he was.<\/p>\n\n\n\n My dad remained physically and mentally active until just months before his brain truly succumbed to the frightening symptoms of DLB.\u00a0\u00a0He biked, traveled, cooked, volunteered and was an extraordinary husband\/father\/grandfather\/brother\/uncle.\u00a0\u00a0The world was his oyster \u2013 and he sometimes prepared an enormous platters of succulent oysters for his onlooking grandchildren, with their big eyes and even bigger appetites.\u00a0\u00a0His progression into not talking was slowly, and yet all at once.\u00a0\u00a0When he first began to have trouble talking, I found that patience, positive eye contact, and small reminders prevailed.\u00a0\u00a0I started a weekly video chat with him and he willingly and studiously accepted the \u201cbrain homework\u201d I gave him.\u00a0\u00a0He explored writing and reading poetry, drawing sketches of his dog, researching and listening to musicians, and digging up old records from the 60s.\u00a0\u00a0Our global pandemic provided the backdrop to house-bound activities, and he was my enthusiastic partner in creatively deciding what we could explore next.\u00a0\u00a0In one of our final calls, he spent ten minutes describing to me what sensations he had when picking up an almond and eating it \u2013 a homework assignment from a brain-fit group class he had done that he was excited to share with me.\u00a0\u00a0I was quite certain (and damn proud!) that I had reverted my dad\u2019s DLB, and that he was going to be OK.\u00a0\u00a0<\/p>\n\n\n\n And then\u2026and then suddenly he just was not. He skipped calls or showed up and only sporadically and oddly spoke. He ignored text messages or sent replies that made no sense. He slipped into a place where I could not find him. Finally, he was gone. My birthday call was the last time I heard him say anything other than \u201cyes\u201d, which he uses out of context and with no clear intent. Does \u201cyes\u201d mean \u201cyes, I understand\u201d? Does \u201cyes\u201d mean \u201cyes, I love you too\u201d? Or does \u201cyes\u201d, just mean \u201cyes, I know you are talking\u201d? I want to believe \u201cyes\u201d means \u201cyes, you are loved my dear daughter, even when I can not tell you anymore\u201d.<\/p>\n\n\n\n With my dad not able to talk, my world has gone quiet\u2026and yet I am certain a new chapter has begun. When I next have the chance to see him in person, I will be quiet(er) too. I will hold his hand and sit as we watch the trees blow in the wind. I will draw simple pictures and pass him the pencil to add to it. I will put records on and smile at him, perhaps tapping a tune on his leg. I will eat almonds with him and tell him what sensations I experience. I will let him lead and be ready to follow. I know very little right now, but I do know that somewhere deep inside the mask of DLB, my dad is there. He is calling me, just not in the words I spent my life listening to. I am so grateful that I can still hear him.<\/p>\n","protected":false},"excerpt":{"rendered":" I was 46 when my dad stopped talking. I know the exact day, because I went to my first game at Wrigley field and was soaking in the glow of a Cubs win when I called home. After my mom gave the phone to my dad, there was silence. She began whispering in the background, reminding him to say \u201cHappy Birthday\u201d to me and gently pressing the phone into his ear so he could hear my voice. He made a sound in the back of his throat, said \u201cHapp\u201d\u2026and trailed off. I know he said \u201cHapp\u201d and not \u201cHap\u201d because he pressed on with the \u201cpppppp\u201d sound for a long second before he gave up. I heard the phone drop and my mom came back on to let me know he had walked away. Still present in body and soul, my dad\u2019s brain \u2013 ravaged by dementia \u2013 had taken away a father\u2019s birthday wish to his daughter. The previous year my dad had written me a letter.\u00a0\u00a0I keep it in my beside table, slightly wrinkled from my tears, and the opening and closing of the neat tri-fold seams he made when he mailed it to me.\u00a0\u00a0By then I already knew something very awful was going on with his brain, but I did not know what.\u00a0\u00a0What I did know was that he was not the same.\u00a0\u00a0His beautiful letter was a sincere tribute a father makes to his daughter so that she will never forget how much he loves her.\u00a0\u00a0Brief and to the point, he made certain I knew how proud he was of me for my life\u2019s work (namely, raising my three sons alone).\u00a0\u00a0He reminded me of how bossy I was when I was a toddler, and that he enjoyed being the guy I bossed around.\u00a0\u00a0My dad.\u00a0\u00a0My hero.\u00a0\u00a0The letter he wrote \u2013 while clearly \u201coff\u201d and signs of what was to come \u2013 is the most treasured gift I have ever received. The early signs of my dad\u2019s Dementia with Lewy Bodies (DLB) were chalked up to him having a hearing disorder.\u00a0\u00a0I remember just after my 44th\u00a0birthday he shared with me that he had a hearing test.\u00a0\u00a0He knew something was wrong, but he was confused what it was.\u00a0\u00a0At that point, most of the conversations anyone had with him about it were medical\/factual, and so I looked at him and asked him how he was feeling about everything.\u00a0\u00a0His hazel eyes became wet and gray and he said, \u201cnot good\u201d.\u00a0\u00a0It would be well over a year before he was diagnosed, and like a puzzle taking shape, each terrible piece was snapping together.\u00a0\u00a0I believed he had a hearing disorder and hugged him (hard) and reminded him I loved him.\u00a0\u00a0In my na\u00efve state I imagined what hugging him with a hearing aid would feel like.\u00a0\u00a0I was willing and wanting to believe there was a specific and physical problem that could be identified and corrected.\u00a0\u00a0I am not so sure he was. My dad remained physically and mentally active until just months before his brain truly succumbed to the frightening symptoms of DLB.\u00a0\u00a0He biked, traveled, cooked, volunteered and was an extraordinary husband\/father\/grandfather\/brother\/uncle.\u00a0\u00a0The world was his oyster \u2013 and he sometimes prepared an enormous platters of succulent oysters for his onlooking grandchildren, with their big eyes and even bigger appetites.\u00a0\u00a0His progression into not talking was slowly, and yet all at once.\u00a0\u00a0When he first began to have trouble talking, I found that patience, positive eye contact, and small reminders prevailed.\u00a0\u00a0I started a weekly video chat with him and he willingly and studiously accepted the \u201cbrain homework\u201d I gave him.\u00a0\u00a0He explored writing and reading poetry, drawing sketches of his dog, researching and listening to musicians, and digging up old records from the 60s.\u00a0\u00a0Our global pandemic provided the backdrop to house-bound activities, and he was my enthusiastic partner in creatively deciding what we could explore next.\u00a0\u00a0In one of our final calls, he spent ten minutes describing to me what sensations he had when picking up an almond and eating it \u2013 a homework assignment from a brain-fit group class he had done that he was excited to share with me.\u00a0\u00a0I was quite certain (and damn proud!) that I had reverted my dad\u2019s DLB, and that he was going to be OK.\u00a0\u00a0 And then\u2026and then suddenly he just was not. He skipped calls or showed up and only sporadically and oddly spoke. He ignored text messages or sent replies that made no sense. He slipped into a place where I could not find him. Finally, he was gone. My birthday call was the last time I heard him say anything other than \u201cyes\u201d, which he uses out of context and with no clear intent. Does \u201cyes\u201d mean \u201cyes, I understand\u201d? Does \u201cyes\u201d mean \u201cyes, I love you too\u201d? Or does \u201cyes\u201d, just mean \u201cyes, I know you are talking\u201d? I want to believe \u201cyes\u201d means \u201cyes, you are loved my dear daughter, even when I can not tell you anymore\u201d. With my dad not able to talk, my world has gone quiet\u2026and yet I am certain a new chapter has begun. When I next have the chance to see him in person, I will be quiet(er) too. I will hold his hand and sit as we watch the trees blow in the wind. I will draw simple pictures and pass him the pencil to add to it. I will put records on and smile at him, perhaps tapping a tune on his leg. I will eat almonds with him and tell him what sensations I experience. I will let him lead and be ready to follow. I know very little right now, but I do know that somewhere deep inside the mask of DLB, my dad is there. He is calling me, just not in the words I spent my life listening to. I am so grateful that I can still hear him.<\/p>\n","protected":false},"author":1,"featured_media":612,"comment_status":"closed","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[34,32],"tags":[],"class_list":["post-722","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-dementia","category-life-lessons"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/posts\/722","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/comments?post=722"}],"version-history":[{"count":6,"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/posts\/722\/revisions"}],"predecessor-version":[{"id":730,"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/posts\/722\/revisions\/730"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/media\/612"}],"wp:attachment":[{"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/media?parent=722"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/categories?post=722"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.3boysandmylens.com\/blog\/wp-json\/wp\/v2\/tags?post=722"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}