by Mike Glenn
Mom felt fine, and as far as she knew, she was reading the world correctly. There was no bump on the head, and then things were different. She just woke up one morning and things didn’t work the way they did the day before. She couldn’t remember. She couldn’t put things together. She couldn’t finish a simple task. She couldn’t remember recipes she had prepared for years.
But there was nothing in her body or mind telling her anything was wrong. In fact, her mind was telling her things that weren’t true. She didn’t lose anything. It was stolen from her. She didn’t bang up the car. Some vandal had hit it with a hammer. She wasn’t missing money from her checkbook; she had just forgotten to write down a check. No matter, she would say, the forgotten check would show up. When it didn’t, the bank tellers were thieves.
And sooner or later, she would work it around until it was my fault. I guess it was my fault, or at least my responsibility. She was my mom. I was her son, and I was the one who would have to make the hard choices about her life.
That meant taking the keys from her for her own safety and the safety of everyone else. I would sell her car. If she wasn’t driving, she didn’t need a car. I would sell her house and most of her furniture, and I would choose the retirement center where she would live.
She would bring this up to me every day for the next four years. If we didn’t talk about it every day, we talked about it the day after.
When was I going to get her a car?
When was I going to take her back home?
How could I do this to her?
What had I done with all of her money?
How could I sleep at night knowing all I had done? To be honest, at first, I didn’t sleep well at all. I worried I hadn’t made the right decision. I worried I was hurting Mom. Then one night I realized Mom might have been angry, but she was safe. The world was safer because Mom wasn’t driving.
Coffee with Mom: “When you buy me a car, I can drive over and have coffee with you in the morning.”
It might have been hard. It might have been uncomfortable, but everyone was safe, and I could live with that. Sometimes life gives you hard choices, and other times life doesn’t give you any choice at all. Either way, you still have to choose and carry the consequences of that choice for good or bad.
Chapter 6
Trusting Me to Do the Best I Can
Coffee with Mom: “So, I have to remember to take this pill that will help me remember everything else?”
One of the hardest things about dealing with a parent who has Alzheimer’s is there’s never a clear-cut answer on what to do next. Even if you know “what” to do, knowing “when” to do it is just as baffling. As a caregiver, you’re constantly dealing with “on one hand” and “then, on the other hand.”
Do you need to take away the car keys? Yes, I do. Are you sure? No, I’m not. So, it’s okay if she drives. No, it’s not okay that she drives. So, you’re going to take the keys from her? Sure, I guess. But when? I don’t know.
Do you need to take over the finances? I’m not sure. She seems to be doing okay right now. Are you sure? No, I’m not. I don’t think she’s behind on anything. Have you checked? No, Mom would consider that an invasion of her privacy. So, having her power cut off is okay . . . well, no. Okay, I need to take the finances, but how do I do that?
Do you need to increase her meds?
Her level of care?
Do you need to call the doctor?
Can I see her today, or would seeing me just upset her?
I guess. Maybe. I just don’t know.
Because you’re never sure, you’re always running these questions around in your brain trying to make sure you’re doing the right thing. Caring for your patient is hard, but one of the things that makes it so hard is you’re never sure you’re doing the right thing. If you could be sure, 100 percent sure, we wouldn’t mind doing the hard things.
It’s just that you’re never sure.
Guess what? Mom was never sure either. She was twenty years old when she had me. She and Dad had been married for just over a year. I was born when Dad was an airman in the Air Force. I was born in the base hospital, and they charged my dad seven dollars and fifty cents. He said later it was the best seven-fifty he had ever spent. Even with all of the benefits the military gave my dad, they were still broke and had no help from their families. They were just two young, scared kids trying to make their way in the world.
Then, I showed up.
And Mom had no clue how to deal with me either. She just got up every day and tried to figure things out. I didn’t come with an instruction manual. There was no website to check. There was just me. If I was unhappy, I cried. If I was happy, I laughed. That was pretty much it. Anything else was guesswork.
I do know this, because she told me this story a thousand times. The Lindbergh kidnapping happened in 1932. For some reason, this crime was fixated in my mother’s mind. Even though it happened before I was born, even before she was born, she was determined that no one would ever kidnap me. I was such a beautiful child (her words, not mine) that she was sure someone would want to carry me off. So, she never left me alone for the first years of my life. I wasn’t left with a sitter. I was never taken to the nursery at church. I would sit with her.
Mom would have given her life for me. I knew that. I always knew that. Whatever her faults, my mom more than compensated for them by the fierceness of her love for me. The Bible is right. Love does cover a multitude of sins.
I simply trusted Mom to do what was best for me. There was never a meeting. We never discussed terms or expectations. It was just understood. If she made a decision concerning me, she would make that decision with only one criteria: what was best for Michael (Mom always called me by my full name).
From the food I ate to the clothes I wore, from the schools I attended to the place I went to church—all of that was done to achieve the best for her son. I didn’t ask that she be perfect. I didn’t demand she do everything the way I would have done them. I just wanted her, to the best of her ability, to do what was best for me.
Coffee with Mom: “I tried to raise you right. I really did, but you turned out all wrong.”
Now, my mother was old. My mother was sick. She couldn’t make the decisions she used to make. She can’t do the things she used to do. Now, I was making decisions for her. The same criteria that applied to her as my mom now applied to me as her son. There was only one question: Is what I’m doing in the best interest of my mom?
Have I chosen the best doctors I could find?
Is the memory unit at Morning Pointe taking good care of her?
Is she taking her medicine?
Are her clothes clean?
Is she getting bathed enough?
Is she eating?
Is she socially engaged?
Have we noticed any changes?
What do these changes indicate?
Does she need a new level of care?
Questions, questions, there were always questions, and I was having to answer them. Was I getting the right answer? More importantly, was I making each decision with love for my mom?
As when I was a child, we never met about this. There was no formal signing of an agreement spelling out what I would be responsible for and what actions I could and could not take. There were no outlines restricting my access and use of Mom’s finances. I had access to all of her money. There was only one question that needed to be asked: Did I spend the money in Mom’s best interest?
That’s it. Maybe I made all the right decisions. Maybe I didn’t. Maybe I should have caught something more quickly than I did. Maybe I should have acted more decisively and with more strength and confidence. But I didn’t. I simply did the best I could. With the information I had, I made the best decisions I could. Mom was simply trusting me to do the right thing.
Was I perfect? No, I wasn’t. There are a lot of things I would have done differently just like there are things my mom would have done differently in raising me.
She didn’t do everything perfectly. She didn’t even do everything right, but I turned out okay.
I’m not going to do everything perfectly. I’m not going to do everything right, but to the best of my ability, given the information I have, I’m going to do what’s best for her. She’s trusting me just like I trusted her.
Coffee with Mom: “I won’t tell you my New Year’s resolutions. You’ll sabotage every one of them.”
I think she’ll be all right with that.
I will be too.
Chapter 7
Finding a Place for Mom
Coffee with Mom: “If having me up here is such a blessing, I’m going to move in with you and bless you every day.”
I kept waiting for some kind of sign from heaven. I wanted a clear indicator of arriving at another decision point on the journey of taking care of my mom. I wanted a video game called “Taking Care of Mom,” and when you came to a crossroads, the game would tell you things have changed, and you need to make a decision.
There was never a definitive moment on this journey. At least, there wasn’t for me.
The best we could do was “it’s this way if we do this and it’s that way if we do that.” We were always weighing one option against the other. Each one had plusses and minuses, and more times than not, we would make a tentative decision, agreeing if it didn’t work out, we’d rethink everything.
One of the hard parts of this journey is you’re never sure you’re doing the right thing. You think you are. You’re pretty convinced you are. From all you can tell you’re making the right decision, but you never know. This uncertainty can become a weight on its own.
We had now come to one of those crossroads. From all of the doctors’ visits, all of the neurological testing, all of the occupational therapies compiled with what her friends were telling me and what I had seen, I was now convinced she couldn’t live alone.
And that was only the first decision in this process. It was also the first fight. “Why can’t I live alone?” my mom would ask. She would ask the question, however, in such a way that I knew she wasn’t waiting for my answer. She had already made up her mind. To her, the answer was obvious. She had lived alone since Dad had died two years before. She had been on her own since she was a teenager. She had done just fine taking care of herself, and there wasn’t any reason to change now.
Besides, where was she going to move? Nashville? She didn’t know anybody in Nashville. All of her friends lived in Huntsville. Her church was in Huntsville, her bank, and all of her doctors . . . what was she going to do in Nashville?
She had a home in Huntsville. This was the home she and Dad had built. She had built it just the way she wanted her house to be built. She had it laid out just perfectly with all of her furniture just where she wanted it. Where was she going to find a house like this in Nashville?
According to her, I hadn’t thought this thing through at all.
Now, remember, the challenge of dealing with an Alzheimer’s patient is they don’t look like anything is wrong. My mom didn’t look sick. She looked like my mom. She was still strong and energetic, and her eyes still focused on me like two brown lasers. She was using the same tone of voice she used when I was a child. That tone of voice that told me the meeting was finished, the discussion was over, and now, we were all going to agree to do what my mother said.
So, I tried to reason with her. “There are a lot of good reasons, Mom, you should consider moving to Nashville. I have a good church. You’ll love my church, Mom. We have great music, lots of good people, and you can get involved. We have a lot of good communities for senior adults, you can take trips with your new friends, and we have the best doctors in the world in Nashville.” The Chamber of Commerce would have been proud of the sales job I did for Nashville and surrounding communities.
None of this made any difference. None at all. I was trying to reason with someone who was losing their ability to reason. I know. It looks ridiculous as I write it, but that’s where I was. I had always been able to reason with her. Now, I couldn’t.
I tried the family angle. Jeannie, my wife, would be there to help her. The boys and their wives were here. Didn’t she want to be around her grandchildren? And soon to be coming great-grandchildren? That didn’t work either.
She especially didn’t want to be around me. I was no longer her favorite son. I was a stranger; someone she didn’t know who was now trying to take over her life, steal all of her stuff, and kidnap her to Nashville. I wasn’t her son. I couldn’t be her son. She had never raised a son of hers to act like this.
After all, I was a preacher. I should know better. Didn’t the Bible say, “Honor your mother”? Certainly, that didn’t mean throw her out in the street, take all of her stuff, and drag her up to Nashville.
But that was the thing . . . I was honoring my mother. I was trying to love my mother the best way I knew how. But it didn’t feel that way. Not to me. Not to her.
Whatever we did next, here’s the one thing I knew: Mom wasn’t going to be living by herself. In the end, she knew it too. When I finally told her, we had no choice. There wasn’t going to be an argument. She was moving. She couldn’t live alone, period.
Then, she started bargaining. Remember, when you’re dealing with an Alzheimer’s patient, they don’t look sick and sometimes they’re not sick. Sometimes, my mother would speak to me with amazing clarity and lucidity. She would stay in Huntsville. She had several ideas about how she could do it. Some of these ideas were good, and some of them, well, not so good.
First, she could live with some of her friends. I knew all of her friends. I had known these women all of my life. They were in the same condition, if not worse, than my mother. Like us, they were dealing with their children about where they were going to move and when they were going to sell their homes. That was a minor inconvenience to my mother.
If they were moving to a new place, then she would move in with them to their new place. If that didn’t work, then she would hire someone to live with her. Lots of people, she said, had caregivers who would become part of the family. She had known “lots” of people who had done that. How hard could it be to find someone who would live with her and help her out?
I laughed when she suggested that one. My mom would have fired anyone we found. She never let anyone help her in her kitchen. She was famous in our family for protecting her turf in the kitchen. You didn’t mess with her pantry. You didn’t mess with her pots and pans. She didn’t like anyone in her kitchen, and everyone in the family knew that.
Hiring someone wasn’t going to work. Living with her friends wasn’t going to work. Mom was going to have to move to Nashville. There wasn’t another choice.
But you know the old saying, “the devil is in the details”? Okay, I had made the decision Mom was going to move, but I had no idea how I was going to pull this off. How would I get her in the car if she thought I wasn’t going to bring her back? How was I going to get her stuff, the stuff she would need, without creating a violent confrontation with Mom?
Coffee with Mom: “You know what I’ve noticed? People bring other people here, but they don’t stay here themselves.”
I’d have to the think of something, but I didn’t want to do this. I didn’t want to do this at all.
But I was going to have to do this. Somehow, I was going to have to get her to move to Nashville.
First, Jeannie and I would have to find a place for Mom to live.
I took a day off, and Jeannie and I spent all day looking at places for Mom to move—and I mean all day. We must have looked at ten or eleven places. Each one looked pretty much like the other one.
Now, I have to confess I have a problem here. W
hen I was little, my grandmother suffered from “hardening of the arteries.” This was what Alzheimer’s and dementia was once called. My grandmother had regressed to the point where she no longer knew my dad. I can remember watching my dad kneel in front of his mother begging his mother to remember him. My grandmother would pat my dad on his head and tell him he was a cute boy. This would break my dad in two. This happened every time we went to see her. I grew to hate going because of what it did to my dad.
I couldn’t get that image out of my mind as we talked to the directors of memory units, retirement centers, and senior care facilities. I kept remembering what happened to my dad, and now, it was happening to me.
What were we looking for? A hospital? An apartment? A dorm room? Well, yes and no. We were overwhelmed by our options. Senior adult care has become a big business. The graying of America and the distancing of the American family—children don’t stay on the farm anymore, they’ve all moved to the big cities—means there are more and more families who need safe and engaging places for their parents to live.
For American entrepreneurs, this means opportunity, and everyone seems to have a better idea on how to best care for senior adults. There are communities filled with small apartments that encourage independent living. There are neighborhoods that specialize in senior adult amenities, such as shorter golf courses and five-star chefs to prepare cuisines for the most demanding taste.
All of this, of course, comes with a price, and even the cheapest options are expensive. We were very blessed. Dad had provided well for Mom, but even with that, we were afraid Mom would outlive her resources. The burden some of my friends are bearing is unbelievable, even heartbreaking. I thank God for my dad and how hard he worked every day. The way he provided for Mom meant our decisions wouldn’t be any more difficult than they had to be.
In the midst of our anxiety trying to make the best decision for Mom, we got a piece of timely advice from our family doctor. Pick the place, he said, that’s the most convenient for you. Think about your day, he added. What’s it going to be like trying to see your mom every day? Or how easily can you get there if there’s an emergency?
