Alzheimer’s and Brain Awareness month is upon us, with June 21st being the longest day of the entire year. “The sun brightens our skies longer than on any other day in 2019. The summer solstice is here: our longest day and shortest night of the year. After [today], daylight begins to wane for the next six months,” as reported in The Washington Post. For the more than 15 million caregivers providing 18 billion+ hours of their time, unpaid to care for loved ones with Alzheimer’s disease, today is symbolic of their journey. Simply put, every day experienced feels like the longest day. Facebook pages will turn purple, people will wear the color purple and hold the ribbon, walk for awareness, and join the conversation to #ENDALZ.
While this campaign of voices may appear as being tied to the Alzheimer’s Association, it is not about one organization or one event. It is about people who are facing long hard fought days — every single day — in the journey through Alzheimer’s. Their days rarely end with the setting of the sun. In fact, another long day of caregiving can often become an evening fraught with sundowning, as strength gets mustered to handle anxiety, fear, and panic. Creating calm is a chore with ever changing requirements. What worked yesterday may not work tonight. Oh, how we praise God if it does!
As I write this blog I’m experiencing a brain fog due to having a cold virus. Illness has a way of jarring our appreciation for many things … energy, creativity, well-being, time, appetite, etc. It’s taken me all day to compose, and I am so grateful for being able to push though the fog. Living with Alzheimer’s has a way of jarring appreciation for the amazing brain, and all that can and might and does go wrong.
It wasn’t until I spent time with a dear friend and fellow author (of When Your Grandma Forgets) that I got the full sense of sundown syndrome. The neurological phenomenon is associated with increased confusion and restlessness in patients with delirium or some form of dementia. True to its name, it occurred as the sun was setting. as darkness was moving in. It was as if darkness, and panic, moved into the soul.
My friend’s wife June was years ahead of my mother in confronting Alzheimer’s disease; I had a lot to learn and still do. She had spent the day with us (being present and even communicating some) at a seminar. Together with Dr. Tariot of Banner Alzheimer’s Institute, Bob Deits and I were honored to help deliver an inside look into physical, psycho-social and spiritual sides of living with the disease.
My mother’s confusion heightened in the evening hours when she reached the mid-stages, and panic would come over her face. I found ways to distract her or just hold her until it passed; similar to how she held onto her “Busy Betty” doll. Role reversal was something I got accustomed to in the course of Alzheimer’s. I saw it as a chance to live out the scripture of becoming like children to enter the kingdom of heaven. Seeing my Mom child-like was as if being prepared for eternity; I was privileged to witness the slow transition. Tender thinking helped reframe the sadness in all that Alzheimer’s stole.
June Deits showed me a different side of sundowning; a side that would make you wish the sun never had to set. Oddly enough, sundowning is observed in many dementia patients living in Alaska — where the sun doesn’t complete set for 82 days of the summer season, according to the Anchorage Daily News. An internal darkness sets in, like a flip of a switch. For June, she went from contentment to confusion to all out panic, within minutes. My friend Bob scurried from room to room, turning on every light, as June’s pleas got louder. “Take me home! I want to go home!”
She had entered a fog inside where no light could be seen. Sitting in the house where they had lived most of their marriage and raised a family had become suddenly totally foreign. Finally, it was the video of her and Bob dancing to their favorite Tango music that brought her back. She looked at me with tears in her eyes and said, “I’m sorry. It gets like that sometimes.” I reached out to give her a reassuring hug … my heart ached in knowing she knew. During all that confusion and panic she was keenly aware of being trapped inside of her own mind. “There is nothing to be sorry about,” I told her. Then, Bob took her hand for yet another dance.
Sundowners remains on my “food for thought” list of things to be understood and remedied. Like the colorful mess of a circuit board, that mayhem keeps thoughts from connecting — making the here and now completely out of one’s reach. Loved ones and care-partners deserve answers; sadly, there are none. In the meantime, night camps are emerging where participants with Alzheimer’s and similar diseases have “structured series of singalongs, crafts and therapy sessions that lasts until dawn.” The idea is a win-win survival tactic for loved ones diagnosed who don’t sleep and caregivers who must get some sleep. Places like the Hebrew Home at Riverdale in the Bronx are providing such life-saving, life-enabling programs.
In closing, I dedicate this longest day of the year to an amazing woman whose wisdom is bound to provide food for thought for generations to come. As is all too common in the dementia journey, there is a new gaping hole among the fellow warriors. This time it came abruptly and had nothing to do with the disease. Like the blink of an eye, Pamela Van Ahn is gone. She began the 1st free-standing memory cafe, open daily like a coffee house with many perks. Pam and her sister Jean opened “Amy’s Place” so that families could come into a safe haven, have a bite to eat, enjoy a program, or just sit with the comfort of being understood and valued, no matter what point in the journey of forgetfulness.
Just like that, Pam’s heroic journey is done. As a nurse, she had taken it upon herself to become primary caregiver for their mother diagnosed with Lewy Bodies; a form of dementia riddled with paranoia and hallucinations throughout the disease, causing severe cognitive impairment. Pam understood better than most what it is to ache for normalcy, and still she embraced others who face similar chaos with arms wide open, filled with amazing love. Pamela Jo Van Ahn was a visionary award nominee and executive director of Caring Together in Hope. There is no doubt, her compassionate gifts will remain as fiber in all she has touched.
No one knows the time nor the hour the lights will go out. We must decide to live each day for the gift that it is. Sending my love and prayers to Pam’s family, and piles of courage to her sister Jean in carrying on at Amy’s Place. In memory of Pam, we will keep on caring together in hope.