My mom has Alzheimer’s Disease.
Most of us have read about it or seen movies about it, but until you experience what it does to a loved one, those are nothing but detached observations that can’t possibly describe the evil tyrant that Alzheimer’s is. Yes, its attack is relentless and debilitating. But the person who has the disease is not its only victim. In fact, the sad reality is that the victim seems blissfully unaware that anything is wrong with them — at least I pray that is the case — while those who love them must stand helplessly by and watch the one they love drift further and further away, even while they’re sitting right in front of you.
My mom tells stories from years ago but can’t remember that she just ate dinner. The stories are jumbled and intertwined. Sometimes she laughs or gets sad as she tells them, whether the emotion is appropriate to the story she’s telling or not. She warns us about imaginary problems and wonders why people who have been dead for many years haven’t stopped by to see her. We go along with the stories and ask questions to hear her tell more. We love to hear her tell them. We heed her warnings and encourage her to tell us more. We remind her who we are and where we live — several times a day. We tell her about the five grandsons she is shocked to learn she has — even as she can recite us their names in order if we prompt her in the right way. My wife and I explain that yes, we really did invite her to our wedding 30 years ago and, yes, that man over there has been her husband since 1956.
There are glimpses of coherence that pop in and out, but those moments seem to be showing themselves less often.
She loves to watch old movies. The beauty of that love is that you can tune into the American Movie Classics channel on TV at any point during a broadcast and she becomes completely engrossed in the story from that point forward. Unfortunately, it also means the TV is on a lot — and not just replaying old movies. The incessant news. The sports. The blathering chatter and audio pollution is ever-present in her family room. Her ears never get a rest from it. Sadly, both she, and we, have gotten too used to hearing it. It’s background noise.
But last Sunday morning we turned it off.
This was not some well-planned attempt to remove an agitating source of tension from the room. The truth is we simply hadn’t turned the TV on yet when my mom came in and sat down in her favorite chair. For no apparent reason, I noticed a stack of CDs sitting on top of my parents’ Bose stereo system. I picked the top one up and read it: “Susan Boyle: The Gift”
I had never listened to Susan Boyle before so instead of pushing a button on the TV remote, I slipped the CD in the slot and hit “play.” The first song was titled, “Perfect Day.” I had never heard it before but the music was haunting and the lyrics captivated all of us.
My mom’s reaction to Susan’s voice was instantaneous. Utter calm. Her countenance went blank. Her shoulder’s relaxed. Her eyes looked up but there was nothing there to see except a melody floating on the air.
And then she started to sing.
Sometimes she was muted and subdued, but at others she sang out with strength and confidence. I didn’t remember what a beautiful singing voice my mom had. I was stunned. The Christmas songs she loved bubbled up out of her heart. Susan Boyle was accompanying her. Song after glorious song.
“O holy night, the stars are brightly shining
It is the night of our dear Savior’s birth
Long lay the world in sin and error pining
‘Til He appeared and the soul felt its worthA thrill of hope, the weary world rejoices
For yonder breaks a new and glorious morn’
Fall on your knees, O hear the angels’ voices
O night divine, O night when Christ was born
O night divine, O night, O night divine”
All the words. In the right order. Thirty minutes of heaven on Earth, not with the incoherent lady who had sat down in her chair, but with the mom — the person — I’ve always known and loved.
The scientists can scan my mother’s brain and they will find a corroded mass of neurons crisscrossing one another on a wild goose chase to nowhere. They can tell me her prognosis is nothing but addled chaos because her machinery is falling apart. But they are wrong because my mom is not a machine; she is not just a computer made of meat.
None of us are. We are more than that. We have minds and souls that animate and make us who we really are — human beings made in the image of God. The theologians can argue about the implications of the Imago Dei. The philosophers can tell us if, and how, saying such a thing makes sense. The scientists can tell us that it is just an illusion. But the union of body and soul is the only way to make sense of the totality of what it means to be human … and it is the reason addled chaos is not my mom’s, or anyone else’s, only future. There is more to her than that.
She does not just have ears that interpret vibrations; she is a being who experiences music. She does not just accept inputs from a digital processor whose circuits have gotten corroded; she is a sentient creature whose personality comprises will and emotion. The words to those songs and the tunes that accompany them are not stored on some magnetized, spinning disk in her head. They are possessed by a mind that can access them even when its hardware is malfunctioning.
There is something about us that is not mechanical — a part of us that animates and transcends the physical things we see. Something that provides us with a continuity of personhood that extends beyond our rotting parts and attaches us to the glorious divine. It is this that gives us a future and the hope of glory. Nothing else explains what we witnessed with my mom last Sunday morning.
Yes, she is in there. And her Father can hear her sing.
Bob, this is beautifully written and a lovely, heartfelt tribute to your beloved mother. Mark's Mom suffered with dementia and we can certainly relate to your comments. The comparisons of the life and soul God has given us to cherish are what we must focus on, but the scientists want to probe and diagnose the human brain. There are no easy answers. I hope on some level your sweet mother understands how truly loved she is. Thank you for this amazing tribute. I plan to share it with my friend whose dad just died this week after a very long battle with Alzheimers. He was 90. I know she will find comfort in your words. You may know her from Cincinnati Christian. I think her kids are similar ages to your sons….Jonathon and Holly Burket. My friend is Cheri Burket. Thanks again.
Thanks, Karen. I have been amazed by how many people have sent me messages saying a similar thing. This disease is all too common. I appreciate you taking the time to leave a note here, and am grateful that the words might be helpful to someone else.
And yes, we know the Burkets from CCS. A couple of our boys played basketball and baseball with Jon. Small world.
Have a great Christmas!
Wonderfully done Bob. I appreciate you sharing this intimate view of your Mom's situation and how you see it, feel it and live it. A very hard road for any of us. Seems like standing on one side of the movie screen and sitting on the other side all at the same time. Thanks again.
Brett Peloquin '81
I am thankful that Casey drew my attention to your writing about your sweet, sweet mom. As always, thanks for your beautiful insights. In this case into not just this horrible disease, but to the life we, in fact, have as a result of how we were created.
Sadly, as you know, I can so relate to your story.
Dad is a shell of his former self. It is painful to be around to the point where it hurts – sometimes too much. He speaks a word, maybe two. That’s it.
All of life’s moments are precious. We take them so much for granted. I try not to these days. The forgotten memories often roar back to remind us of very important things. I learn that every time I spend a minute with dad – even the silent ones.
He has gotten a bit feisty, sometimes angry. I’ve seen him angry twice in my life. This change is hard to handle. The docs adjust his meds. It helps for a week or two or, maybe, three. I see the future. It is anything but pretty.
Oddly, dad smiles – most of the time. That, thankfully, has not changed. Some of this has to do with these goofy (think circa 1985, foam covered) head phones on and listens to music! The 50’s, apparently, are where he ‘lives’ these days. He doesn’t snap his fingers, or bob his head or, even, sing. Those nearby are happy about that. They don’t know why. Dad, unlike your mom, does NOT have a beautiful singing voice. Some might say, “Carl can’t carry a tune in a bucket”. Actually, that would be incorrect. He carries only ONE tune in his bucket! The same one – over and over and over again. Oddly, I learned all I needed to know about singing from him. The fact that he sang – but only in church – mattered to me as a kid. (It matters more to me now.) I thought it was so very odd. Why would anyone who couldn’t sing do it anyway – loudly – AND with passion?! When I was old enough, and forward enough, to ask, he replied, “God knows my heart, when I sing”. And he smiled. I have that to hang on to – for as long as I possibly can.
Thanks for the kind words, Brett.
Bryon,
I haven't seen your dad in quite a while but I can just picture his glowing smile from the many happy times we've spent in his presence. What a kind and powerful role model he is. I would love to hear him sing too … no matter how bad it was.
Thanks for taking the time to read and comment. Keep holding on. His voice will be amazing when he sings before the Throne.
Our love and blessings to all the Sutherlys …
Bob,
We attend CPCC but have not met. John Weinberger forwarded your blog to me. I work with people with dementia and you are very correct in saying there are still "there." It is now up to us to bring them out.
I would love to meet you and your wife as we have several things in common (relatives with dementia, sons in the military, etc) I'll look for someone to introduce us on Sunday.
Thank you for sharing this. Peace to you and your family during this holy season.
Beth Rohrbaugh
Hi Beth,
Thanks for taking the time to drop a note. Sounds like we do have a lot in common! I appreciate your thoughts and Mary and I look forward to meeting you over the Christmas season.
All the best …
Bob – Thank you for sharing this beautiful story! This is a great reminder for folks visiting and caring for loved ones with Alzheimer's, not to forget the use of music as a healing agent. I found this to be the case with my own grandmother, especially spiritual music that she knew. Praise and thanks to God for your "30 minutes of heaven on earth." God is so good!
Thanks, Brian. When I told my wife I had talked to you this morning, she told me that, you being a musician might appreciate this. I have NO IDEA how you found it without me telling you about it but I guess it's just a "coincidence."
Glad you enjoyed it.