On the day I was diagnosed, I awoke with an old Western song trudging through my head like a covered wagon on a rocky road. “I’m heading for the last roundup,” the singing cowboy mourned. No explanation presented itself. But later the point came home, loud and clear.
“I’m afraid you have probable Lewy body dementia,” the neurologist said. Then, with a frankness most physicians would stifle, he added, “You’re in trouble.”
Lewy body dementia (LBD) is the second-most common cause of dementia behind Alzheimer’s disease, but is by far the least known. Although an estimated 1.4 million Americans have been diagnosed with LBD, it is the most misdiagnosed form of dementia, according to the Lewy Body Dementia Association. There are few current clinical trials. And many medications cause more problems than they solve.
LBD is an umbrella term for dementia with Lewy bodies and Parkinson’s disease with dementia. Its graceless name is the result of having been discovered by Dr. Friedrich Lewy in 1912. He recognized how tiny abnormal protein deposits in the brain affected thinking and/or movement.
If you are afflicted with LBD, you are indeed heading for the last roundup. From the time of diagnosis, average life expectancy is 5 to 7 years, according to the Lewy Body Dementia Association. But it can range from 2 to 20, depending on factors such as health, severity of symptoms, and age. If you are in your late 60s or 70s and have very good care, you may last longer, for example.
I am not younger than 80. And while I am still around, I want to share a way through the dark of dementia. In the process, I can shed some light on a disease that greatly diminishes those who have it.
The path is prayer. God is the divine physician, the first responder whenever we are in dire straits. And all of us will be embraced by a love that far surpasses whatever damage disease can inflict on us.
So here’s my story—told through the conversational prayers that have kept me sane and faithful.
Good morning, my sweet Lord. I hope you don’t mind the intimacy of my address. Since we all call our loved ones by affectionate nicknames, I assume you must approve of the practice. Not to overstate my case, but I need you—now—before the disease I call “Evil Uncle Lewy” gets me down permanently! He invaded my life like a creature from the black lagoon, terrifying me with a hallucination of creepy characters crawling toward my bedroom in the middle of the night. My husband was away. I was completely alone. They kept coming toward me. I felt my heart shrink. I had no voice. I opened my mouth but no sound came out. Yet you heard me. And they withdrew.
I later learned that hallucinations, seeing things that are not there, are one of the key symptoms of LBD. They haven’t all been as disturbing as the night invaders. But the imaginary exotic insects and children hanging by their knees from tree branches are unsettling. It’s really unsettling, Lord. I know they are figments of my befogged brain. Yet I am still startled when they appear.
Please consider this a standing request: Steady me when I am seeing things. You know what I mean. I am relying on you, dear One.
Ever-attentive Listener, you know only too well that throughout my adult life I have secretly prided myself on my ability to earn my keep as a writer. As the first college graduate in my extended family, I was well pleased with my modest success. Uncle Lewy has made short work of that. LBD is shrinking my brain and wreaking havoc on my memory. I forget my address and phone number. I can’t remember the article I just read in the daily paper. Names escape me. I am at times unable to retain the facts on which a decision must be made.
I would complain that it is humiliating. But I sense that you would allow yourself a telegraphed smile at the mention of a virtue you personify. So yes, Lord, I will try to be more humble in accepting the limitations this disease imposes.
May I make two simple requests, which I trust you will honor? One: No matter how much damage Uncle Lewy does to my memory, I would be devastated if I forgot my husband, Dave, my primary caretaker, or our son, David, who died under tragic circumstances eight years ago. I pray for them both daily, as you know. To forget would be a betrayal.
Two: Although it is awful to contemplate, what if, before the end, I forget you, my God? I do trust. Help, Thou, my lack of trust.
Maternal Comforter, thank you for your unlimited patience in attending to my story. You embrace me as a mother holds her whining child on her lap, saying: “There, there, now. Tell me all about it.” No detail is too insignificant to hold your attention. Assured of your acceptance, I dare to complain of a symptom that may sound piddling. But to endure it, day after day, night after night, sometimes for hours, is becoming too much for me. My wrongly wired brain acts like a manic disc jockey who keeps playing the same requests over and over. However, the songs are never my choice. And they are sung in a metallic robotic voice that I find myself interiorly singing along with, against my will.
The playlist is a musician’s nightmare: “America the Beautiful” followed by “Ob-La-Di, Ob-La-Da” followed by “My Boyfriend’s Back” followed by “O Come, All Ye Faithful.” Each is repeated ad infinitum. Only insistent prayer will make it stop for a time, Lord. Help me to grin and bear it. Or fire that DJ and set me free.
Heart Dweller, the psalmists testify that you give sleep to those who are deprived of it. As a fortunate one who slept eight to 10 hours a night until recently, I once took that gift for granted. LBD gave me reason to reform my thankless ways. Insomnia is a common symptom of Evil Uncle Lewy’s presence. And sleeping well is considered by many to be proof that all’s right in their undisturbed lives. When my 90-year-old father was asked if he had had a good night’s sleep, he invariably replied, “Of course. I’ve got a clear conscience.”
I hate to mention it, Lord, but I sometimes hate to go to bed because I know what most often comes next. First, there is the arranging and rearranging of the sheets, which are never quite right. Then come the mechanical singers who have left all their lullabies at home. Next are the leg and foot muscle cramps that grip like vises and won’t let go. Then there are the worn-out worries about the future plots Uncle Lewy has for my demise. Finally, there is the required clock watching to verify exactly how much sleep I am missing.
I hear a familiar voice that quiets me: “Be still and know that I am God!” (Ps 46:11).
I am well counseled. Thank you, who dwells in my heart. You are my peace, whether I sleep or wake.
Mender of Broken Hearts, my body is beginning to betray me. My hands shake with the expected tremors. My toes curl up like aggravated turtles. I have fallen twice. When I consider the probable LBD late-stage symptoms, my brain comes to a full stop, unwilling to go any further. Who among us is ready to take on paralysis, inability to read or write or follow a simple conversation, garbled speech, choking on food or water, acting out with violent speech or physical attack, incontinence, and complete dependence on a caretaker? Although some people with LBD are fortunate enough to end their days at home or in hospice, many have no choice but to enter a nursing home. Help me to remember, Lord, that my own father (Alzheimer’s) and my sister Carole (multiple sclerosis) had to bear that placement. Yet I still fear that I will not be able to “age in place” or die among loved ones.
There is some comfort in the truism that not everyone experiences every symptom before death overtakes them. I’ll happily pass up any of the symptoms that evade Evil Uncle Lewy’s attention.
My Love, my Light, my Life, do you remember when I was 16 and had a habit of walking to St. Peter’s Church in the late afternoons to pray before that larger-than-life crucifix? It depicted you in all your beautiful dark-haired and dark-eyed Jewishness, and it was impossible not to love you to death. One day I was so moved by your predicament on the cross that I had to do something. So I promised that I would always try to hold you up in an effort to prevent your torso from hanging heavily from that cross. I pictured myself doing so through concentrated prayer, willing service, or painful self-sacrifice.
My promise even now calls me to lay down my objections to whatever LBD may do to my body and mind. It cannot destroy my soul. I, who will seem to be lost to LBD, will be found by the one who has earned his title as Savior of the world.
How fitting that this very morning, before the sun rose, I awoke in silence. No mechanized music polluted my head. Instead, a new song appeared, sung by a lovely voice. Confident and unafraid.
“Be with me, Lord, when I am in trouble. Be with me, Lord, I pray.”
Joy filled my being as I recognized that voice. The voice was mine. The voice was me. And I would rise.
Thanks be to God!
To learn more about LBD, visit the website of the Lewy Body Dementia Association at www.LBDA.org. And pass it on.