by Mike Glenn
She didn’t want to remember when Dad had his first heart attack, but she did. “I was at home,” she said, “when they called me. They told me they were taking John to the hospital. I dropped everything and rushed over to the emergency room. I could hear the doctor saying, ‘Stay with me, John. Just stay with me, John.’ When I heard that, I knew your daddy was dying. I felt just like I did when I was a little girl. I don’t ever want to feel that way again.”
According to Mom, her life would be fine if she never thought about those days again. I guess she’s right. There are days that all of us would rather forget. I know there are days I don’t want to remember.
I don’t want to remember the look on Mom’s face when I saw the dementia kick in and she didn’t know what to do next. There are moments in your life you hope you never experience. You never want to see your airline pilot panic. You never want to see your doctor stumped, and you never want to see your parents, well, human.
I don’t want to remember the anger in Mom’s face when I told her she wasn’t going back home. She was going to live in Nashville. Her face contorted in a mixture of anger, fear, disappointment, and betrayal. How could a son do this to his own mother? Her eyes filled with tears. Her mouth contorted in rage and her cheeks flushed in humiliation—all at the same time.
I don’t want to remember the moment I realized she didn’t remember anymore. Once, when I was talking to her, I asked about why she returned to school when I was in elementary and middle school. For a few years, Mom attended classes at the University of Alabama in Huntsville. “Why did you go back to school?” I asked her. “What were you going to major in?”
“I was studying for the ministry,” she said. “I was going to work in the church. Then my mother died, and everything changed after that.”
Now, there are several problems with that story. For one thing, my grandmother had been dead for years. She died when Mom was twelve. As for going into the ministry, no one knows where that came from. My mother had never talked about going into the ministry. She loved the church, but there was nothing in any conversation in any part of her life when she had mentioned a notion of being called to ministry.
What had happened? She had forgotten. She had forgotten about going back to school to get a business degree. She had forgotten when her mother had died, and she found a way to fill in the gaps of her memory with stories she did remember. I worked in a church. She loved going to church. She took that memory and put it together with the moment that changed everything in her life—the death of her mother—and added all of this together to explain another disappointment in her life, a college degree she’s sure she could have done but never had the chance.
Coffee with Mom: “I don’t think I forget. I think you make stuff up that never happened and then tell me I forgot.”
That was another moment when I realized how much of my mother I had lost. She wasn’t just losing her memory. She was losing her. This is the horrible reality of this disease. A person doesn’t just lose their memories; they lose themselves. After all, what are we without our memories? Isn’t it the shared memories that bind a relationship together? The moments we have in common that weave our lives together? What happens when we forget? When we can’t remember? What happens to our relationships? What happens to love? What happens to us?
In the movie Eternal Sunshine of the Spotless Mind, a couple goes through an experimental treatment to remove the memories of their painful breakup. The irony of the movie is the couple ends up back together. While the things that initially attracted them are still there, they’d forgotten the reasons they couldn’t stay together. All of us think that if we could forget a painful moment in our past, we’d be so much happier. The exact opposite is true. We can’t find healing until we remember, understand, and draw some kind of meaning from what happened. With Alzheimer’s and related illnesses, it’s impossible to find this kind of coherence in your life.
Without memories, we can’t find meaning in life. When my mom was losing her memory, she started stealing things in the center. Whenever I would visit her, I would always leave with a handful of things she had “picked up” from around the facility. Some of the things came from other residents; some came from the center itself. When I would ask Mom where she got these things, she would tell me, “My mother gave that to me.”
My mother, a deeply committed Southern Baptist, was now a kleptomaniac. I tried not to laugh, but it was funny at times. I could find no rhyme or reason to the things she stole. If something caught her eye, she stole it, and it became hers. A trinket that was on the table suddenly became the priceless brooch she inherited from her mother. No matter what it was, it was always something her mother had given to her.
But her mother didn’t give her those things. She couldn’t have. My mother had lost everything, including those mementoes that connected her to her mother. (I kept them.) So, she picked up things and assigned them a memory. She was trying to replace the memories she had lost with new memories.
And when she couldn’t find new memories, I would remember for her. I would tell her the stories that gave her life meaning. I would tell her about Dad and their journey. I would tell her about her sisters, and her homes, the lake house, and her grandchildren. I would tell the stories as many times as she wanted to hear them.
Coffee with Mom: “What did I want to tell you? Probably wasn’t important. I’m using my brain to remember only important things.”
It’s what love does. Love remembers. If you think about it, it’s what we do for each other in worship. We remember for each other. Life is hard. Life will catch all of us from time to time; and in the hard moments of life, we forget who God is. We forget who we are. So, we gather together and read the familiar stories, sing the well-known hymns, and we remind each other of the Father’s love and that we belong together.
Perhaps the day will come when I won’t be able to remember either. When that happens, I hope my sons will come around and tell me my stories. I hope friends will come have a cup of coffee and remind me who I used to be and who I am now.
Life is hard, and sometimes we forget.
But love remembers.
Who we were.
Who we are and where we belong.
Chapter 10
This Is All Your Fault
Coffee with Mom: “Of course I slept well. I have a very clean conscience. How well did you sleep?”
“This is all your fault,” she said. “Every bit of it. You sold my house, and now I don’t have any place to go. You sold all my stuff. All the things your daddy and I had worked so hard to get and you just up and sold them. You sold everything. I don’t have anything. I don’t have my clothes. I don’t have a car. What have you done with all my stuff? How could you make such a mess of things? Why did you do this to me? This is all your fault.”
And I guess she was right. It was all my fault. I had made those decisions. I had made the decision to move her to Nashville, to sell her house, her furniture, and her car. I invested her money for her, chose her doctors and the place she now lived.
“You kidnapped me!”
“Mom, I didn’t kidnap you.”
“What would you call it? You put me in your car and wouldn’t let me get out. You wouldn’t tell me where I was going. I call that kidnapping.”
“Mom, I had to move you up here.”
“No, you didn’t. You just decided you were in charge and I didn’t matter anymore. You kidnapped me and threw me in this prison.”
“Mom, you’re not in prison.”
“Can I go home?”
“No, you can’t.”
“Can I leave here?”
“No, you can’t.”
“Well, that’s prison, and you put me here. This is all your fault.”
I guess it was.
I didn’t mean for it to be my fault. I didn’t get up o
ne morning and say, “My life is going too well. I think I’ll just drive down to Huntsville and tear up my mother’s life.” Some days, I wished it was that easy. I wish there was a moment when I had the options in front of me. Kind of a “Mission Impossible” moment. “Mr. Glenn, your mission, should you choose to accept it . . .” Of course, I would have accepted it. There was never any question about taking care of Mom.
There was just never a moment when the big decision was made. There was no before and after moment—no ceremony, no handshakes, or solemn oaths. Nothing to sign. I can’t even tell you when it happened. The only thing I know is that one day I woke up, and I was in charge of everything. One day I made one decision. The next day I made two decisions, and before I knew it, I was making every decision.
Mom and I had always been close. We talked about everything. She would call and talk to me about decisions she had to make concerning property they owned, stuff with their lake house, and decisions she was having to make concerning Dad’s care. She may have been curious about my opinion or interested in my counsel, but the decision was always hers.
In my family, it had always been this way. To paraphrase President George W. Bush, my mom was the “decider” in my family.
Then, one day, she couldn’t decide, but she would never let on like she couldn’t decide. Mom had several tricks to cover her growing inability to catch on to what was going on around her. For instance, she stopped deciding what restaurant we would eat at. If I asked her where she wanted to go to eat, she would tell me she would be happy with whatever I decided. Or, she would say that she wasn’t all that hungry and any place I chose would be fine. When we got to the restaurant, she would have “forgotten” her reading glasses. She would ask me to read the menu, so she could “hear” what she wanted. The restaurant would be “too dark” and she wouldn’t be able to read the menu. She wouldn’t want anything this fancy. She just wanted a hamburger. Or, she would just have what I was having.
Mom had enough social skills and confidence to fake her way through most casual situations. If you had not known my mom before, you might not ever guess how sick she really was. She was doing her best to keep it hidden from me. She hated people being “in her business,” and she went to extraordinary lengths to protect her privacy.
But those days were over. I was stepping into her life. I was crossing boundaries I had never crossed in my life. And slowly, but surely, I was beginning to understand what I was up against.
Friends had called me to tell me they were worried about my mother. She was forgetting things. She was missing things she didn’t normally miss and making mistakes my mom never made. She was missing the house payment every now and then. She would forget to move money from one account to another, and checks would bounce. She told me she was overwhelmed with taking care of Daddy—that Dad would never let her alone, that he demanded her attention twenty-four hours a day, and she didn’t have time to take care of things. He would call her when she was working on things, and she’d forget where she was and what she was doing.
But now, Daddy was gone. No one was calling her. No one needed her. No, right now, she was just lost, and I had to make the decision.
Over the next four years, Mom would get lost more and more, and I would make more and more decisions. Then, one day, I was making all the decisions. What’s more, everyone was expecting me to make all the decisions. No one asked her what she wanted to do. No one asked what she thought. If we were in the doctor’s office, the doctors and nurses talked to me. If they acknowledged Mom at all, it was the usual niceties.
“They talk to me like I’m a potted plant,” she said.
But no one looked to her for decisions. Not anymore. In time, Mom gave in to that reality. Now, she never admitted that new reality, but she went with it just the same. She would say, “I’m thinking about doing this, what do you think?” I would respond, and she would say, “Okay, let’s do that.”
That was totally unlike my mother. First, she never asked my opinion. The old joke, “if I want your opinion I’ll give it to you” wasn’t a joke to me. It was my life. My mom only respected strength. If you asked for help, that was a sign of weakness, and Mom would never tolerate that. She would never admit that she needed help either.
Now, Mom surrendered to my thoughts and decisions. In fact, she surrendered so easily that I really didn’t trust it. I thought she was planning a trap for me. She was only waiting for me to get comfortable and then, BAM! She’d close the trap around me. No, I’m not making this up about my mom. I had seen her “play possum” before. I had seen her fake weakness or need to just entrap her target in their misdeeds. I won’t say I was afraid of my mom, but I will confess to deep respect for her strength and cunning.
When I was a kid, when my mom would ask for my help, she would mean she wanted me to bring in the groceries, to fold clothes, or mow the grass. You know, I was supposed to help. Mom knew everything that needed to be done, and she knew what I could do. She would call me and give me my little piece of something that needed to be done.
Coffee with Mom: “Why don’t you let me preach this morning? I could tell the church a thing or two about you.”
Now I was making all the decisions. I was choosing her doctors. I was picking up her medications and talking to the pharmacist. I was talking to her caregivers at Morning Pointe and making sure her clothes were clean, and she had the personal products she needed. Not all these decisions are comfortable ones for a son to make for his mother, but I got used to making them.
Making all of the decisions meant it really was all my fault. All of it was my fault. I moved her to Nashville. I chose her retirement center, and I chose her church. Of course, I chose the church I pastor. This means I chose most of her friends.
According to everyone who met her, my mom was witty and funny, the life of the party. According to my mom, she was lonely, hated Nashville, and she wanted to go home.
And this was all my fault . . . and I was okay with that.
What Mom said was my fault, I began to see as my responsibility. In some ways, this was a privilege. I was honored to be able to take care of my mother.
For one, she was my mother. Who knew her better than me? Who knew her stories? Her triumphs and losses? Who knew what she had overcome? Who knew her great loves and dreams? I did, and right now, I was the only one in the world who did. Once I was able to get comfortable with this, I found a different kind of freedom. Yes, I was making all of the decisions because they were my decisions to make, and because no one in the world loved her more than I did.
It didn’t bother me what other people thought or what my mom said. I was the one responsible, and the blame was all mine. I knew I was the one who was going to pay the band, so I didn’t feel bad at all calling the tune.
So, the question changed. The question went from “Is Mom happy?” to “Am I okay with where we are?” This doesn’t mean I became totally self-centered—quite the opposite. I became the enforcer of the standard. In the time I had my dad in the hospital, he told me in no uncertain terms how he expected me to care for my mom. I was the only one who knew what my dad had said.
My mother brought this to my attention more than once. “Your father never mentioned any of this to me.” No, he didn’t. Mom would never let my dad talk about dying. She thought it was a sign of him giving up. But he talked about dying to me. He talked about dying, what would happen when he wasn’t here anymore, and how he expected me to take care of Mom.
According to Dad, it was all my responsibility. According to Mom, it was all my fault.
And you need to know, it’s all your fault too. The faster you come to grips with this, the better off you will be.
It doesn’t matter what anybody else feels or thinks. It’s our fault. Are you happy with the doctor? Good. If not, find another one.
Don’t like the care she’s getting? Find another place. I don�
�t care what anybody else thinks or says. They aren’t living with it. They don’t know. You’re the only one who does. It’s all your responsibility; it’s all your fault.
The only thing that matters is if you can live with yourself and the decisions you make. The biggest thing you can do is do what you have to do so when the moment comes when time runs out, you can look in the mirror and say, “No regrets.”
Not that you would have done everything perfectly. No one does. You will look back and wish you hadn’t said this or that. You’ll wish you had noticed subtle changes in behavior before you did. You will be much wiser and smarter in hindsight. But don’t be too hard on yourself. No one has figured out Alzheimer’s. Don’t be angry at yourself because you didn’t figure it out sooner, faster, or better. You did the best you could, and sometimes, that’s all you can do.
Coffee with Mom: (after I said we couldn’t have coffee if she moved home) “Well, maybe I’ve had enough coffee with you.”
Yet, when it’s over—and it will be—you’ll have to live with yourself.
If you can honestly say whenever you had to decide or get something done, that in that moment, you did the best you could, you’ll be fine.
After all, it was your responsibility, your privilege, and all your fault. When the moment came, and something hard had to be done, when love required a tough call from you, you handled it.
And it was all your fault. You’ll be okay with that.
Chapter 11
What Kind of Son Am I?
Coffee with Mom: “Are you doing the funeral today?” Me: “Yes, ma’am.” Mom: “Just tell them Jesus will get you through. He’s getting me through.”
