by Mike Glenn
Table of Contents
Introduction
Chapter 1: Put On Your Oxygen Mask
Chapter 2: Meet My Mom
Chapter 3: Don’t Mess with John
Chapter 4: Something’s Wrong with Mom
Chapter 5: Taking the Car Keys
Chapter 6: Trusting Me to Do the Best I Can
Chapter 7: Finding a Place for Mom
Chapter 8: The Confrontation
Chapter 9: I Don’t Want to Remember
Chapter 10: This Is All Your Fault
Chapter 11: What Kind of Son Am I?
Chapter 12: When My Mom Cussed Me Out
Chapter 13: Mom Prays When She Plays
Chapter 14: I Can’t Be Dad
Chapter 15: You Have No Right
Chapter 16: Take Me Home
Chapter 17: The Only Man Who’ll Need Two Votes to Get into Heaven
Chapter 18: Until I Can’t Say Goodbye Anymore
Chapter 19: Things No One Will Tell You (But You Need to Hear Anyway)
Chapter 20: Loving Your Parents When You Really Don’t Like Them
Chapter 21: The Best of “Coffee with Mom” Tweets
Acknowledgments
In poignant flashes and bittersweet recollections, Mike Glenn walks us through a journey of conversations with his mother during her decline with dementia. Grab a copy of Coffee with Mom and be reminded of one critically important message: Time is a very great gift, especially in a season of goodbye.
Karen Kingsbury, #1 New York Times bestselling author
There are 5.8 million Americans living with Alzheimer’s disease, which has also been described as a family disease, because it affects so many people surrounding the patient. Pastor Mike Glenn gives us a window into the details of his mother’s battle with this illness, and the ways he learned to cope and love her through it all. Coffee with Mom helps us not feel so alone in our own journeys. Alzheimer’s is the only killer in the top ten in this country with no treatment or cure, and I’m grateful to Mike for helping to raise awareness through his personal, vulnerable, and honest story.
Kimberly Williams-Paisley, actress, author
Some days my ninety-year-old mother calls me and tells me how my ninety-year-old father, her husband of more than six decades, is doing. Sometimes I want to say, “Mercy, mom, he’s ninety,” and sometimes I do, but most times I just listen because there’s not much to say. Or do. But listen. There is no promise that we will age gracefully or that the aged will be gracious in their old age. Sometimes we and they do, but not very often if what I hear from others is accurate. Aging is hard but I’m not sure it is as hard as caring for the aging. Most of the time you aren’t sure you are caring well, even when your caring comes straight from a heart of love for your aging mom or dad. Mike Glenn’s story of his mom is a story of a woman gradually dying, of a son gradually grieving, of a life gradually ending, and of a pastor gradually letting go of an unforgettable life of an unforgettable mom. He learned what kind of son he was—a mighty fine one, if you ask me. This is a love story, a son for a mother. Mike, my friend, had to learn that he was okay with his caring for his mom. He was better than okay.”
Dr. Scot McKnight, author, speaker, professor
Mike Glenn and I walked a similar journey and, in the end, had the distinct honor of caring for and serving the first person that cared for and served each of us. In my case—it was my dad who struggled with dementia in his latter years. In Mike’s case, it was his mom who was diagnosed with Alzheimer’s. In both cases, it became one of the most difficult and one of the most honoring opportunities of our lives. Mike and I have been friends for years. We have so many of the same interests and concerns. We both are crusaders for justice, for racial unity, and so many other things. But I believe our strongest connecting point was each of our callings to being a caregiver to a parent patient. Whether you find yourself in a similar situation or whether you know someone who is—this is a fabulous love story of a son loving and caring for his mother.
Michael W. Smith, singer, songwriter
Mike Glenn’s sharing of his mom’s wit, wisdom, and the heart break of Alzheimer’s is a treasure. I followed their story personally as his friend and through the tweets of her thoughts of the day. I laughed, cried, and was proud of both of them on their final journey together. You will be too.
Dave Ramsey, #1 bestselling author
Copyright © 2019 by Mike Glenn
All rights reserved.
Printed in the United States of America
978-1-5359-4901-9
Published by B&H Publishing Group
Nashville, Tennessee
Dewey Decimal Classification: 616.8
Subject Heading: ALZHEIMER’S DISEASE / BRAIN—DISEASES / DEMENTIA
Cover illustration © Taaron Parsons.
Unless otherwise noted, all Scripture quotations are taken from the Christian Standard Bible®, Copyright © 2017 by Holman Bible Publishers. Used by permission. Christian Standard Bible® and CSB® are federally registered trademarks of Holman Bible Publishers.
1 2 3 4 5 6 • 23 22 21 20 19
This book is dedicated to my mom, Barbara Bustin Glenn, who taught me to do the very things that aggravated her so.
And to my brothers and sisters, known and unknown, who are on this journey with someone they love.
Introduction
I didn’t start out to write a book. Like most people who are dealing with family members who have Alzheimer’s or dementia, I was just trying to survive. My mom had been diagnosed with Alzheimer’s and dementia in the fall of 2014. I had moved her to Morning Pointe Assisted Living and Memory Care in the winter of that year.
Both Jeannie, my wife, and I were working in demanding jobs. She was a triage phone nurse for the Vanderbilt Hospital Clinics in Williamson County, and I was the pastor of Brentwood Baptist Church. Our boys were married and well into their careers, and Jeannie and I were new grandparents. Our lives were full and good.
Then, we added Mom.
My family situation meant I would become Mom’s primary and sole caregiver. We chose Morning Pointe in Brentwood because it was very close to our house. We could be there in minutes. It was also on my way to the church. I could stop by and have coffee with her on my way into my office.
That’s what I did. For four years, not every morning, but several times a week, I would stop and have coffee with Mom while she ate her breakfast. Sometimes she’d be in a good mood, and we’d laugh as we told old family stories. Other days, she’d be angry, and I’d be accused, attacked, and condemned, and yes, some days, cussed out. Still other days, she’d be sad and unable to find a reason to live.
In our conversations, she would say things, and I’d write them down. Some of them were funny, some were angry, and others were just the stuff of life. They were all honest, and they were all her. Friends would accuse me of making up her quotes, but I didn’t. I would edit them to fit into the limitations of Twitter, but other than that, everything in Coffee with Mom is 100 percent her.
When I started publishing her quotes, people started coming up to me and telling me their own stories. “My mom said that,” they would say. Or, “I went through that with my dad.” Or simply, “I’m praying for you.” I soon discovered I was in a very large family of people who were related by having a loved one with Alzheimer’s or dementia. They didn’t talk about it a lot because they knew no one would understand. Unless you’ve been there, you don’t know what it does to your soul to see the woman who taught you about integrity and honesty start stealing everything that wasn
’t nailed down. When you asked her about it, she’d tell you her mother gave it to her and fight you if you tried to take it away.
Caring for an Alzheimer’s patient means you hurt all the time. “Coffee with Mom” was one of the ways I dealt with my own grief. I was surprised to find out it had helped a few others as well.
In the following pages, I share some of our stories. This isn’t a comprehensive history of the last four years of Mom’s life nor is it any kind of medical account. This is one son’s story of trying to love his mom the best way he knew how.
First, you need to hear something I wrote for you called “Put On Your Oxygen Mask.” Chances are you are here because you don’t know if you can do this. Breathe. With the Lord’s help, you can. Second, I want you to meet Mom. This is one way our stories are not the same—there’s no one else like my mom. And you can probably say the same about yours. To know my mom, you’ve got to know about John, so I will introduce you to my dad too. The remainder of the book, I hope, will narrate our stories in a way that will share some things we learned along the journey. Some things we did well. Others we could have done better. But my hope is that you find your story inside of, or adjacent to, my story. I hope you’ll see that you are not alone.
Throughout the book, you will find quotes I published online between 2014 and 2018 that came from our time together over coffee. They are labeled “Coffee with Mom.” Some are funny. Others are laugh-to-keep-from-crying funny. All of them were my mom.
Mom died in July while I was writing this book. The hardest part of my writing has been to go back and change the verbs from present tense to past tense.
So, I dedicate this book to all of those caregivers who are trying to love someone with this disease. Too many days, there are no right or wrong answers. There’s only “this is the best I can do.” This is the question that haunts us: “Am I doing everything I can do?” The short answer is we can’t do everything we want to do, but we’re probably doing all we need to do. If you’re showing up and loving them well, you’re doing the best you can do.
And in the end, we will be okay with that.
It will be enough.
Chapter 1
Put On Your Oxygen Mask
Coffee with Mom: Grief catches me at the strangest times. I can hear a song, recognize a smell, or see an old photograph, and instantly I become a nine-year-old boy who misses his mom.
The nursing supervisor slid her stethoscope carefully over my mom’s chest. She stopped, turned her head slightly, and focused her listening. She stood up and looked at me. “I’m sorry, Mr. Glenn, but I’m not getting anything. Your mother is gone.”
I was sitting in a chair next to my mom’s bed, stroking her forehead and hair, waiting for the nurse to tell me what I already knew. Mom was gone. I’d been losing her a little bit at a time for four years, and now, in the stillness of Williamson Medical Center on this Saturday afternoon, it was over.
Mom was gone.
And I cried and cried like a little boy. I cried and cried like it was the first time I had heard the news. I wasn’t ready for this. You’d think I would be, but I wasn’t ready for this. Whenever you lose your mother, you’re nine years old inside. I became an orphan in that moment.
I know that sounds funny. After all, I was sixty-one years old, and my mom was eighty-one, but that’s exactly how I felt. I was all alone in the world. I was an orphan.
Early in my ministry, I led a funeral service for the ninety-five-year-old matriarch of a family. As we left the graveside and started walking toward our cars, Charlie, her youngest son, fell apart. He began crying, his shoulders heaving as he tried to push off the weight of his grief.
“I’m an orphan,” he told me. “I’m an orphan, Mike.”
“Charlie,” I said, “you’re sixty-five years old. You’re too old to be an orphan.”
“No, I’m not,” he insisted. “I’m nobody’s little boy anymore.”
All of these years later, sitting in my mom’s hospital room, I remembered my conversation with Charlie. He was right. When your second parent dies, you’re an orphan. It doesn’t matter how old you are or how old your parent is, when they die, you feel a loneliness in the world you really can’t explain. You’re nobody’s little boy anymore.
I was an orphan.
I was surprised by the depth of my grief. I had been grieving for four years. I thought I had cried all of the tears I had to cry. I really thought when my mom did die, I wouldn’t cry that much. In fact, I had actually worried about it. What if people thought I didn’t love my mom because I didn’t cry all that much? I needn’t have worried.
With a disease like Alzheimer’s, you lose your loved one by degrees. I had been losing Mom little bit by little bit over the last four years. Every time she lost an ability, every time I had to take something away, or she forgot a story, I would grieve. Your grief is like a dull toothache that never goes away. You hurt all of the time. Your pain is never enough to shut you down, but it does rob your days of joy.
Anytime I was by myself, anytime my thoughts would wander off, I would go back to the latest confrontation with my mother and rethink everything. Could I have said something differently? Could I have done something differently? Was there something else I needed to do? I never could find a satisfactory answer. I was always second-guessing myself. That only added to the anxiety of the grief. I would go over and over every situation and every moment again and again.
When I first noticed something was wrong with Mom, I cried. I cried all of the way from Huntsville to Nashville. I did that a lot.
I cried because my mom was scared. Whenever I was visiting her and told her I had to go back to Nashville, she would beg me to stay. “Just spend the night and go home in the morning,” she would say. I would tell her I couldn’t, that I had some early morning meetings. Most of the time that was true, but sometimes it wasn’t.
Sometimes, I just couldn’t stay. I had to leave. I couldn’t stay in Huntsville, where the absence of my dad created a hole so large it allowed all of the air in the atmosphere to escape. I couldn’t breathe. The weight was too heavy, and some days I could barely walk. I knew the day was coming when I would have to take over, but on these days, I just couldn’t do it.
I know I should have been stronger. I know I should have been bolder and more confident, but here’s what I couldn’t understand or get anyone else to understand. Yes, I knew something was wrong with Mom. She had lost my dad. She was grieving. She was lonely. She was hurting. She was afraid about the future.
But I was grieving too.
Anytime I went to my mom’s and dad’s home in Huntsville, I kept looking for Dad to be there. Whenever I would walk into the house, the first thing that would hit me was my dad wasn’t there. I had to deal with my own grief. My dad was bigger than life, and his absence left a huge hole in our world.
But I never had time to cry for my dad. Mom quickly needed my full attention. From the haze of trying to grieve my dad’s death, I was having to try to discern subtle, but real, changes in my mom’s life. Where was Dad’s insurance information? Mom didn’t know.
“Mom, we need to go change the property to your name. Do you have any paperwork?” Yes, she did, somewhere. We just never found that “somewhere.” Everything we did had to be done from scratch. I had to explain to every vendor, renter, government official, and banker that I was having to get my mom’s affairs in order, and I was trying to close out Dad’s business affairs after his death. I was a little overwhelmed.
Thankfully, nearly everyone knew my parents, and was eager to help. They would pull out the needed forms and show me where to sign. Eventually, we got everything squared away, but it was needlessly difficult and tedious. Mom couldn’t find anything, but we had to look. We spent hours going through filing cabinets and stacks of paper. She kept forgetting her passwords. Every time we tried to set up someth
ing so she wouldn’t have to worry about it, she’d forget the password, or forget where we put it . . . and worry about it anyway.
Today she’d know a story, and tomorrow she wouldn’t. Today she would know everyone in the picture, but tomorrow she wouldn’t. She didn’t remember her birthday. She didn’t remember mine. It’s a cold day when your mother doesn’t remember your birthday. Sure, you know it’s the illness, but it doesn’t help. She didn’t know my birthday, and I wondered would the day come when she didn’t know me.
And you grieve again.
Here’s the reality. You can’t grieve all of the time. You can’t hold up under the constant, squeezing pressure. One of the growing concerns of the healthcare community is the health of the caregiver. If you’re the primary caregiver, especially if the patient is being kept at home, you can quickly ruin your own health. Lack of sleep, verbal abuse, and sometimes physical abuse can take a heavy toll on your life. You have to learn to take care of yourself and not feel guilty about it. No one is helped if the caregiver goes down.
Coffee with Mom: If you’re the primary caregiver, don’t forget to take care of yourself. That means rest, proper nutrition, and exercise . . . and time with God. It doesn’t help anyone if you break down too.
At first, this is hard to deal with. For one thing, you created this problem, right? You’re the one who made her unhappy, and if so, then you have to be responsible for making her happy again, right?
Wrong. You didn’t do anything to cause these problems. The illness did. You got it just like your patient did, which means you have to undergo treatment just like they are. Now, that may not mean taking medication or frequent doctors’ visits, but it does mean submitting to a disciplined regiment to make sure you’re in good enough health to take care of your loved one.
First, don’t be afraid to ask for help. I know a lot of people who have suffered from the guilt of having to put their husband or wife in a facility when they were no longer able to take care of them at home. By the time a situation has come to this, more times than not, we’re past the time when a decision should have been made. For your safety and for their safety, you have to make the hard call.