Trusting Me to Do the Best I Can

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? Well, on one hand…

Do you need to take over the finances? Well, on one hand…

Do you need to increase her meds? Her level of care? Well, on one hand…

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% sure—you wouldn’t mind doing the hard things.

It’s just that you’re never sure.

As I have thought about this, here’s where I’ve landed. Perhaps it will be helpful to you.

When I was little, I trusted Mom to do what was best for me. Nothing was ever said, and we never really talked about it. I just knew that my mom was doing her best to do what was right and good for me.

I didn’t ask that she be perfect. I didn’t demand she do everything the way I would have done it. I just wanted her, to the best of her ability, to do what was best for me.

Now, my mother is old. My mother is sick. She can’t make the decisions she used to make. She can’t do the things she used to do. Although we’ve never talked about it, she, like me a long time ago, is simply trusting I’ll do the right thing.

She didn’t do everything perfectly. She didn’t even do everything right, but I turned out OK.

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 her I trusted her.

I think she’ll be alright with that.

I will be too.

 

Mom’s Not OK

When people ask me how my mom’s doing, I usually say she’s doing OK. I’m not lying. I’m just not telling the whole truth.

What I mean by OK is she’s not in any immediate crisis. Her health remains impressively good. She doesn’t take any medication (except her dementia medicine). She remains active and engaged. Most days, she’s still sharp in her conversation and still has her sense of humor. While she’s a little less steady in her walk than she was, she still gets around pretty well.

Unless you know her, you won’t pick up the subtle changes in her. The other day she told me a story. While I was listening to the story, I was thinking how coherent this story was. She told it with confidence and all of the details lined up. Here was the problem. The three people in the story didn’t live at the same time nor at the same place. She had pulled people from three different times in her life and conflated them into the same story.

She can’t really tell time. She doesn’t know if I’ve been there an hour or ten minutes. She can’t keep track of her days. She didn’t remember my birthday. She won’t remember hers. She won’t remember our family stories until I start retelling her. She’ll sparkle in a moment of recognition, but tomorrow she won’t remember what we talked about.

My mom is quietly slipping away from me. Every time I see her, it’s like she’s a little further away and I have to shout louder to find her. I know she’s in there. I can see the twinkle in her eyes (OK, sometimes it’s fire), but I see flashes of the woman I’ve always known as my mom.

I lose her a little bit every day, and I grieve a little bit every day. It’s like a tooth ache that won’t go away. It’s never enough to make you stop, but it never goes away. I now read Psalm 23 very differently. Together my mom and I are walking through the valley of the shadow of death. She won’t make it through. Maybe this year, maybe next year, she’ll slip into the shadows, and she won’t come back.

The irony of this moment is she’s grieving for what she can’t remember. I’m grieving for what I can’t forget.

Mom’s not OK. And neither am I.

The reason I’m writing this is, since my mom’s diagnosis, countless numbers of friends and strangers have offered encouragement and support. “We’ve been there,” they will say, and then they’ll tell me their story of their parents or their in-laws. Sometimes, they just give me a sad smile and pat me on the arm. They know. I know. We can’t say in words what we know. You probably know someone who is going through this in their own family. I’m writing to remind you that your friends aren’t OK. They’ll tell you they are, but they’re not. So, pray for them. Grant them a little grace for the day, a little mercy for the journey. Their mom or dad is not OK, and neither are they.

I know. My mom’s not OK and neither am I.

I Miss My Mom (When You Become the Parent to Your Parent)

There’s something about little boys and their moms. For some reason, being around your mom makes you feel like you’re 9 years old—regardless of how old you may be at the time. My mom never recognized that I had grown up, married, and raised children of my own. Sure, she loved my sons, but to her, they were “her” grandsons much more than they were ever my sons. She never recognized that I had a career that required a lot of self-discipline and wise decision making. She always had to add her advice to make sure I was doing the things I needed to do to grow up healthy.

To understand my mom, you have to know her mother died when she was 14. Overnight, she became the mother of her three younger sisters. My mom was never an adolescent. She went from being a child to be an adult overnight. My mom has always been in charge. She’s extremely strong, and she only respects strength. Silence, to my mom, meant either you agreed or you didn’t know. Either way, she felt empowered to make the decision—whatever that decision may be.

And now, she’s not in charge. I make all of the decisions. I tell her what doctors she’ll see. I pay her bills. Her friends call me to see if she can go to lunch the way my friends used to call her to see if I could come out and play. She’s knows this, and it frustrates her.

She wants a car. The doctor says she can’t drive. She still fights me every day to go buy her a car. She points out the kind of car she wants. She even tells me what color she wants. My mom knows I’m not going to buy her a car. It’s a point of pride for her.

She reminds me of times when I messed up while I was growing up. (Funny, for all of the things she can’t remember anymore, she can remember a surprising number of my failures.) She does this to remind me I’m not qualified to be in charge of her life.

Her fights with me have a desperate quality about them—like she’s trying to grab hold of something so she won’t just slip away.

But she is slipping away. Every day it seems she gets a little further away. I told my wife it’s like my mom is getting further and further away from her eyes. When I look into my mom’s eyes, I know she’s in there. She’s in there somewhere, but she’s getting harder and harder to find.

Like I said, when a boy is around his mom, he’s just 9 years old. I’m 9. I want my mom to come and tell me I can do this. I want her to tell me I’m strong, and I’ll get through this. I want her to tell me she’s known God had something special for my life the first time she held me in the hospital after I was born.

I want her to tell me it’s going to be all right.

But it’s not. It’s not going to be right until Jesus calls her home. She knows that. I know that.

I’ll miss my mom then, too.