Based on the true story of Dr. Oliver Sacks, Penny Marshall’s drama Awakenings (1990) centers on Dr. Malcolm Sayer (Robin Williams) and his patient Leonard Lowe (Robert De Niro). In the film, Sayer uses a drug designed to treat Parkinson’s Disease to awaken catatonic patients in a Bronx hospital. The most dramatic and amazing results are found in Leonard. Although Leonard completely awakens, the results are temporary, and he reverts to his catatonic state.
Dr. Sayer tells a group of hospital grant donors that although Leonard’s “awakening” did not last, another type of awakening — learning to appreciate and live life — took place. While not as dramatic as the movie, my Dad, who suffers from severe Dementia, recently awakened.
On June 1, 2015, I published “I Wish I Could Flip a Switch and Wake Up My Father — My Perspective on Dementia/Alzheimer’s.” In it, I describe my family’s experiences with my father who suffers from Dementia (as a result of a stroke 10 years earlier) and how, over time, the stages get progressively worse.
I wrote the story for two reasons: it was cathartic, and I hoped it might help others. In closing, I urged readers to accept and cherish their loved one in each stage, and as long as he is still on this earth, treat him as part of life and include him. I know my father is in there.
When I penned this story — although my father’s dementia had progressed to the point where he barely spoke, he had no short term memory, and needed assistance taking care of himself — he still recognized me and the family. He was also amiable, and we could take him out to movies and restaurants, which he enjoyed. These positive things prevented me from feeling total despair and gave me some comfort.
Since then, however, the Dementia has worsened. My father was hospitalized with pneumonia for 10 days. It took a lot out of him. He is now fully incontinent and needs to be fed. He often gets agitated and cries in pain like a child (although no one is hurting him) when we shave him or bathe him. Sadly, those special times of going to the movies and out to lunch are no longer possible. And although I still follow my own advice of “acceptance” and “inclusion” (we still watch TV together and enjoy a meal at home), I was overwhelmed with sadness.
My father was and is my hero. Growing up with three older brothers, he became the protective “older brother” for each of his friends. He was never afraid to take on the local bully. In fact, he was an undefeated boxer in the army, going 26–0.
My father’s toughness and drive served him well in life. He turned his street smarts into a successful business and marketing career. He is also a generous man who treats others with respect and kindness. No matter his lot in life, he shows his appreciation to those kind to him (e.g., he’s always been a generous tipper).
My Dad was perhaps the most protective of and most loving toward his wife and three children. His messages to us growing up — seemingly contradictory but ultimately reasonable — were these: you can do anything you put your mind to, and as long as you do your best, that’s okay.
Funny and charming, my father also had his quirks, like only wanting “a “sliver of cake” then eating five slivers, or putting a long brown or black sock across eyes when he took a nap or went to sleep. My father is my best friend, so to see his strong presence deteriorate over time is heartbreaking.
But last week, the switch was flipped, and my father awakened.
Due to a second bout of pneumonia and hypertension, my dad was treated with a high dose of steroids and antibiotics. About 24 hours into his hospital stay, he began to AWAKE.
He asked me, “How are you doing?” The importance of what he said didn’t dawn on me immediately because he my father no longer initiated conversation or spoke in full sentences. He hadn’t asked me about my own life or well-being for years.
I responded, “I’m okay, Dad.” Then, he said, “You know I love you very much.” Smiling, I suddenly realized my father was much more alert — not quite the man before his stroke, but a strong resemblance to him.
He then asked, “What happened to me?” I responded, “You have pneumonia. You are being treated, and hopefully can go home soon.” (I realize now he might have been asking, “Where have I been these past 10 years?”)
My father’s awakening continued for two days, and my brother videotaped it all. Among the things we were able to experience…
My father told my brother it was great to have a son like him and that he was grateful for his children and grandchildren, answering with that’s interesting or that’s fabulous when we gave him family updates. He also asked my sister about her beloved dog, which she adopted while he was in the early stages of Dementia. She also mentioned it was Labor Day, to which he quipped, “Yeah, I’m working real hard.”
We also talked with my father about sports, Jewish athletes in particular (which always delighted him because there have been so few). Also mentioned was Wayne Chrebet, my father’s favorite football player who overcame unbelievable odds to succeed in the NFL. Talking about his own boxing career, my Dad said he was underestimated like Chrebet and often surprised his opponents. With tears in his eyes, my Dad recalled the holiday picture of him and his grandchildren dressed in Wayne Chrebet’s jersey. He then asked, “What is Chrebet doing now?” I Googled it and told him.
Perhaps the most remarkable aspect of my dad’s awakening was his interaction with my Mom, who lives with him every day and clearly suffers the most from seeing my Dad’s worsening condition.
At one point, he told my Mom she “was the love of his life.” After 62 years of marriage, I’m sure the words had special meaning for her. Maybe equally as amazing was when he asked Mom for some money so he could tip the nurses and aides who’ve been so nice to him or when he asked Mom for a sock for his eyes so he could take a nap.
Sadly, my father’s Awakening was temporary, and he reverted to his full-blown Dementia. Our emotions were mixed — blessed that we had the time with Dad when he was alert, but sad it didn’t last. We were filled with questions.
Why did this happen? A medical reason perhaps? My father’s neurologist said he has never seen anything like it in his 30 years of practice. My brother, an internist and cardiologist, theorizes that my father suffered from hypoadrenalism, or a lack of steroids, and when he was infused with high doses of steroids, his body and mind temporarily healed and he became much more alert. I guess this makes sense medically, and my brother says he spoke to other doctors who have seen this kind of effect from steroids. But I have trouble understanding how someone suffering with Dementia, a progressive mental disease with loss of function, suddenly can become more alert.
Maybe it’s a miracle? I’m not a religious person and have never given much thought to miracles, but this seems to me to be as logical a conclusion as steroids’ reversing an irreversible progressive disease. Plus, miracles don’t have to be logical.
Maybe my father was sending his family a message? Besides the expressions of love, maybe there is more meaning to his conversations with us: never to underestimate him because he will continue to surprise us and fight, just like the fighter he has been his whole life.
Can we recreate what happened to my Dad? First, even if there is a medical explanation, infusing my Dad with high-dose steroids provides great medical risks to his health and is not an option. Second, we can pray for another miracle, but miracles typically don’t happen twice, do they? Third, we can accept the two-day awakening and cherish it, even if we can’t duplicate it.
I brought my 25-year-old son and 22-year-old daughter to visit my Dad, but when they arrived, he’d already reverted back to his prior mental state. My daughter was overwhelmed with emotion. We, then, showed her the video my brother shot, and she saw her grandfather say, “I’m very happy just to be here and alive.”
My Dad is now home, and we’ve started (hopefully long-term) hospice care. But even in my anguish, I’ve found hope. It’s a hope that comes not only from my father, but also from the film Awakenings: although the “awakening” may not last, another type of awakening — learning your suffering loved one appreciates and lives life — can take place.
I know my father is in there.
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