Our day starts like most of them have the last couple of weeks.
Will she know me?
Will she be her?
Or is this alternate, manic Mom?
Will I be strong enough to get through the day without losing my composure?
Without leaving the room?
Our night was better than most, but still rough. We were up about every hour…she pulled her cannula out a few times. Choked on the fluid slowly building up in her lungs. She had to be sat up and her lungs given some persistent, gentle pounding.
There was the bathroom, of course.
And a scheduled breathing treatment.
I wake up at 4:30 a little too relieved that it is finally Thursday.
After meds and breathing treatments at 7:00 o’clock, she goes back to sleep. Fitfully.
Mom wakes up at 9:30. Earlier than normal. But we roll, right?
After a shower and breakfast, I give her two options for the next part of the day.
Do you want to hang here until 12:45 when we have to leave for my doctor’s appointment? Or do you want to leave now and go sit by the lakefront for a little bit before my appointment?
Mom: “Well. What would you choose if you were alone?”
Whoa. Surprisingly empathetic and deeper than normal thinking.
Me: “I’d go to the lake.”
Her: “Then that’s what we should do.”
So that’s what we do.
It is lovely. Like absolutely. She sits. Watches the waves. Enjoys the wind on her face. The sun on her arms. I hunt for glass within yards of her.
I give myself twenty minutes to walk, periodically coming back to give her the glass I collect. Which she immediately examines and turns over in her hands.
Eventually, I sit down on the grass next to her and we hold hands until we have to go.
“That was lovely,” she says.
“It really was,” I reply.
We head to Froedtert, where it turns out that having a conversation on the lakefront in the wind, while the person calling is trying to change an appointment results in confusion. My appointment isn’t until next Thursday.
My lady is a little agitated in the wheelchair on the way back across the skywalk. Asking if she couldn’t just sit on one of the benches. “Wouldn’t it be easier?” she asks.
I explain that we are heading to the car. If she sits on the bench I’d just have to come back and get her.
Good thought, though, I say.
We settle back in the car, I give her two more options for the day.
Do you want to go home now or do you want to go back to the lakefront and get a rootbeer float?
Those rootbeer floats had been our go to last summer. A source of fun and hilarity as my lady usually wound up turning her float into total chaos.
“I’ll do whatever, but a root beer float sounds nice,” she answers.
“Then that’s what we’ll do,” I laugh.
Everything is status quo. We order corndogs, a rootbeer float for her and a rootbeer for me.
I leave her for a couple minutes to wait for our order. She watches the cars and the seagulls.
When I come back, we are all good. She does, indeed, make a mess of her float.
About halfway through her destroying her float, I remind her that she has a corndog to eat…if she wants.
“Ohhhhh. That’s a surprise!” she sort of half squeals.
“Because I didn’t think I’d get one, too,” she says with judgment in her tone.
Here’s where everything in me would like to tell her that the corndog has been sitting in front of her the whole time. But what’s the point? Her brain sees what it sees. And it didn’t see the corndog right in front of her.
She opens the container and immediately dips the dog into her float, dripping custard and rootbeer all over herself. She doesn’t notice, so neither do I.
For just a second, I take a deep breath and think,”This feels so normal.” It is like a moment from last summer recaptured.
My soul soars.
The empty outdoor dining space starts to fill up. A quartet of teenagers rides up on their bikes and takes the table upwind from us. No masks.
In fact, I look around and even the people not eating or drinking aren’t wearing masks.
My anxiety kicks up. Mom has finished her corndog…most of it…and she’s dumped the last bit into what was left of her float. But then she starts to try to drink the float through the corndog stick. I give her my rootbeer. Which she happily starts sucking down.
Me; “So we’ve got to get going, Mom. It’s getting crowded and there are a lot of people without masks.”
For what felt like the hundredth time…
Me: “Because there’s a pandemic with a disease that attacks your lungs. You need to be wearing a mask to protect yourself and others. A lot of people here aren’t, so we need to go, okay?”
Her: “No. I don’t want to.”
Me: “I get that. But we need to go.”
Her: “You can go. I’m going to wait for my husband.”
Did you catch that subtle shift?
I didn’t. Not soon enough anyway.
She called my dad “her husband.” She has always called him “Dad” or to other people, “Don.” She recently started with the “my husband” reference.
And now that I’m sitting here thinking about it, it usually happens when she’s feeling vulnerable. But it also means, when she does it with me, that I am no longer me.
Regardless, I’m not sure that what happened next would have changed at all had I known I was no longer Lora, her daughter.
“Dad’s not here, Mom. He’s at home waiting for us. So let’s get a move on.”
“I’m not going anywhere. I don’t know you. I’m waiting for my husband.”
I do the only thing I can in that moment. I grab my phone and call my dad. I explain what’s going on and put the phone on speaker. Unfortunately, my speaker stinks and she’s hard of hearing on her best days, let alone on a confused one.
But my dad does try to explain that he’s at home and that she needs to come with me so we can go home.
I do put her mask on. Which probably doesn’t help the situation.
But I persist in explaining that we’ve got to go.
She persists in resistance.
Ten minutes later, I do finally get her to get up from the picnic table to transfer to the wheelchair.
But this happens mid-transfer…
“I’m going to scream! I don’t want to go! I’m going to tell people you’re kidnapping me!”
“Mom, they all just watched us sit here for forty-five minutes. No one will believe that your daughter is trying to kidnap you.”
“YES, THEY WILL!”
Me quieter, “okay. It’s okay…”
I buckle her in. Which I rarely do. But because of her concussion and her being combative, for her safety, the situation requires it.
This is absolutely NOT what her mental and emotional state require.
All the way to the car she engages in a tirade of swearing at me and saying she doesn’t know me. I volley back that I’m her daughter. She’s safe. We’re okay. We’re just going to the car to go home.
“I’M NOT GOING HOME WITH YOU!”
Again, if I am in her brain I would’ve understood that she thinks I mean my home (wherever she thinks that was.).
We get to the car, and now she’s full on in STRANGER DANGER mode.
So I pull out her State ID, my driver’s license, and her car registration.
Aside: We’ve been traveling with her wallet in the go-bag. I threw it in for a doctor’s appointment where we’d needed her insurance cards and never took it out. It’s been helpful after physical therapy where she insists she has to drive. Instead of me being the total bad guy and explaining she has Alzheimer’s and can’t drive, I simply tell her that she didn’t pass her last driver’s test and now has a State ID so she can vote.
Back to the present…
I hope that seeing my name and picture and her name and picture along with her car registration will bring her back.
Me: *showing her our IDs* “See? See my name? Lora Ann Kaelber. And see yours? Estella Yvonne Kaelber? We have the same last name.”
“That doesn’t mean shit. A lot of people have the same last name.”
“Hey, okay, well that’s true. But see here on yours? The address? (I read the address to her.). And see here on mine? (Again, I read the address.).”
Her: “So what, people can live-in the same place and not know each other. I don’t know you.”
Well, that’s certainly true. She’s out-logic’ed my logic.
So I try with the registration because earlier she’d said that her car wasn’t her car. I explain that this is really her car. Here look at the registration. It’s got your name on it, I say.
“That doesn’t mean anything. You stole my car and you’re trying to kidnap me.”
To which ensued a “No, I’m not/Yes, you are” argument.
If you’re a caregiver, you’re laughing now because every now and then you just need to do it. Even though this argument always goes nowhere, sometimes you just have to make it known that you are, in fact, right. Or maybe you don’t. Maybe it’s just me.
But at this point, I just need some steam to leave my head.
My anxiety is in sixth gear now. Because we’re in the parking lot. The people here didn’t just watch us having a great time eating food together. They don’t know she’s having a reality break.
She is…very loud now. Her eyes are wild. She is not in her body. Her delusion has her firmly in it’s nefarious grasp. I’m just barely hanging on praying no one calls the police.
With a lot of effort, a lot of yelling on her part and a lot of physical resistance, she does finally get i into the car. At this point, she’s hit me and pulled my hair. I do not hold this against her because I understand she thinks she doesn’t know me.
It takes me five tries to get the wheelchair in the trunk because she keeps trying to get out. She is a fall risk and so while I’m trying to be respectful of her current reality as much as possible, I also have to keep her safe from herself.
Hey Lexus, child locks on the front passenger door would be great right about now.
I understand that some of you reading this are appalled that she got in the car against her will. At this point, I don’t care if you judge.
She was yelling that I was kidnapping her. My first objective in life is to keep her safe. Right on the heels of that is to make sure my dad and I are being taken care of or taking care of ourselves.
A contact with the police, in the frame of mind that she’s in, plus the bruises she has from her fall on Monday might lead to further investigation…we have nothing to hide but, honestly, who needs that…? So judge if you want to. I just wanted us in the car and away from people.
Problem is she doesn’t want to be in the car.
So we’re on Lincoln Memorial now almost to the beach house and even though the doors are locked, that doesn’t mean shit.
She opens the door.
I’m sorry for the faint of heart about this next part, but…
Me: “JESUS FUCKING CHRIST!!!! ARE YOU TRYING TO KILL US????”
I reach over and grab the door and hold it shut.
She, for her part, is now shifted into screaming “HELP! HELP! SHE’S KIDNAPPING ME!!!”
And, my ninety-five pound mother is surprisingly strong. She pushes against the door with all her might.
Thank God for small favors that Lincoln Memorial is almost deserted going north because I have to swerve into the other lane to avoid the door possibly swinging into someone or something.
We battle for control of the door, repeating those same two things…JFC/ SHE’S KIDNAPPING ME!… until I can pull off the road just north of Bradford Beach.
I park and she’s out the door like a shot. Yelling the whole time, “HELP! HELP! SHE’S KIDNAPPING ME!!”
I run to keep her from falling because Jesus that’s the last thing we need now, right?
“STAY AWAY FROM ME! YOU’RE CRAZY!!”
There’s a guy in the clearing enjoying the sun and a book. He looks up and stands up.
Me: “It’s okay. She has Alzheimer’s.”
He sits back down, nodding like he understands. Right now, I’m just thankful he believes me.
She sits down in the car with her feet on the pavement and wails, “WHY WON’T ANYBODY BELIEVE ME???”
“I’m sorry,” I say. “I’m not trying to kidnap you. I just want to get you to your house.”
“That’s what you say. But I know you’re trying to kidnap me.”
After about ten minutes of this back and forth, her eyes still wild with fear, I remember that some dear friend a couple years ago gave me the number for the Caregiver Hotline.
Caregiver Lifeline is what it is.
So I call it.
And this wonderful woman named Stephanie answers.
She is unprepared for our scenario, but is very calm. She asks me to give her just a second while she looks some things up. Because I’m desperate, I skipp the eye roll that probably would’ve happened otherwise.
But here’s the thing, whatever resources Stephanie uses to help us, are right at her fingertips. She is knowledgeable in how to find what she’s looking for quickly. It is literally just seconds before she’s starting in on calming both of us down.
First thing she says is that my mom is panicking. Obvious, right? But hearing someone else say that put a different perspective on it for me. Because in this moment, I am also panicking.
It is like an epiphany.
Like: Ohhhh, right…okay. I know exactly what that feels like. And we all know anxiety lies to us.
So my mom is basically me when I’m having a panic attack, only her reality is super altered to the point of delusion and mine is only altered to the point that my anxiety twisting the truth.
“I need you to try to bring her back into her body, get her to feel the things around her,” Stephanie says soothingly.
Hey, my therapist says that.
“Talk to her about her surroundings. Tell her about the wind and the sun.”
So I do. “Hey, can you see how blue the sky is today? Isn’t that amazing how blue it is? And there aren’t any clouds today. *pause* Look at how green the trees are. And the wind, see how they’re flipping the leaves over turning the trees a different color every so often?”
I’m used to doing this because this is an exercise I do. (Thanks, Sara!)!
“That’s good. Keep going,” Stephanie whispers. I can feel my pounding heart start to come down a notch.
“Can you see the water. It’s so blue today, isn’t it?”
“That’s great. Keep going.”
So I keep repeating variations on the same theme about our surroundings.
“Can you try having her take deep breaths?” Stephanie gives me the words to say. Using a five count, I ask my mom to breathe in and hold it. We do this a few times, but because of her lung situation, I know she’s not going to be able to follow me in practice. But she’s sort of listening.
And then someone walks by and she spins herself right back up again.
“Help! Help! She’s trying to kidnap me!”
The person doesn’t even look her way, they just walk right by.
So we start over with trying to ground ourselves in our surroundings.
“Look at how green the trees are…”
My mom is following my words, but she’s still wildly looking around for other people to help her. She’s gripping the seatbelt for dear life.
Seeing that she’s using that as a sensory grounder, I get up and grab a piece of sea glass we’d collected earlier. It’s a larger white piece. I hold it up so she can see.
“Hey, do you remember this from earlier today? This piece of glass we picked up on the beach?”
I hold the glass out to her and she takes it. It is our first non-confrontational interaction in about forty-five minutes.
She turns it over in her hands a couple of times. I have no idea what’s going through her head. She might throw it at me.
“That’s great. That’s really good,” Stephanie says.
I almost start crying. The urge is over-whelming.
“Yeah,” my mom says, and she points to a chip in the glass, “and this part wasn’t there.”
I have no clue what she’s talking about, but I agree. “That’s right,” I nod.
I point south towards the place where we were earlier in the afternoon. “We were right down that way when we picked that up. Gosh that was fun, wasn’t it? It was just lovely.”
And again, someone walks by.
“Help! Help! She’s trying to kidnap me!”
It’s a group of people this time and they pause.
Me: “It’s okay. I’m her daughter. She has Alzheimer’s. It’s just a rough day.” I hold my breath.
And just like that, my anxiety is ramped back up.
One of them says to my mom, “You’ll be okay.”
“WHY DON’T THEY BELIEVE ME?” she moans.
And just like that we’re back where we started and I’m starting to spin out. My heart is pounding. I’m sweating and shaking. Totally about to lose it.
Stephanie continues to throw out suggestions and we continue to try them. But every time we start to make some headway, someone walks by.
My tears are breaking through.
Why can’t she see that I’m daughter? That she’s safe?
Right, I get it.
But in this moment, I just so desperately want my mom back.
And then finally, someone walks by…
“Help! Help! My daughter”…pause of confusion… “is trying to kidnap me!”
A breakthrough. Her delusion is starting to crumble.
Me: “Did you hear that?”
Stephanie: “I did. This is good.”
My mom deflates a little and shuts her eyes. And at that moment, the phone disconnects. Instead of calling Stephanie back, I call my dad.
I explain what has happened since we spoke about an hour ago. He’s floored. He’s also trying not to laugh because from any outside perspective, I suppose, this is funny. But I’ve literally just walked through hell with my mom.
And we’re still walking.
We try again to put the phone on speaker. He’s trying to tell her that I’m their daughter. That she’s safe and that I want to take her home. He says that he’s waiting for her to come home. But we’re on Lincoln Memorial and my phone doesn’t connect to the bluetooth in the car…the phone part, not the music part. So she hears none of this.
“She can’t hear you, Dad.”
So he and I start running scenarios. My dad is full of ideas in which we somehow tie the passenger side doors together around the column.
“Do you have any rope?”
“Any duct tape?”
“Yes, but it’s too thick to tie around the door.”
“What about… is there a child lock on the door?”
“No. We looked into this on Monday when she was getting out of the car. There’s no front seat child lock. And I can’t put her in the back seat, even if I could get her there. I wouldn’t want her to feel trapped.”
“Like that’s the thing. For some reason, she’s feeling trapped. So even if I could get the doors secured, I wouldn’t want to do that. Plus, what if she somehow gets them undone on the interstate? Then we’re totally fucked. Trying to keep the door shut on Memorial was hard enough.”
“I just need her to be calm. And I don’t know how long that’s going to take, but that’s what needs to happen before we come home.”
We talk for a few minutes longer. I don’t know if she’s listening to us. Or if she fell asleep and her brain half re-booted, but…
She opens her eyes and starts fidgeting around in the passenger seat.
“Okay. I think it’s time I go,” she says sitting up a little straighter.
“Dad, I think we might be able to go now. Hold on.”
I get up from my spot on the curb. Fuck! Man is my back fucked from battling over the door. But as I get in, I see her putting her leg up like she’s going to try to get in the driver’s seat. So I slide in quickly.
She looks at me funny. I hold my breath. “I’m going to drive.” She is adamant.
“Oh, hey, I think it’s better if I do.”
She kind of slumps back into the seat saying nothing.
“I think this is it,” I relay to my dad. “Hopefully, we’ll see you in a little bit. If not, I’ll call you back.”
“I love you,” he says.
“I love you, too.”
I ask her to put her seatbelt on and she does.
I take a giant breath, hold it, and slowly let it out and then pull out into the street.
The rest of the ride is uneventful. She sleeps mostly. I am resolved to say nothing. I have no idea at this point what might set her off.
About five minutes from my parents’ house, my mom wakes up, “I’d like to go to the cottage first.” (A home they sold in 2009.).
I grip the wheel tighter, keep my eyes straight ahead and pretend that she hasn’t said anything. We’re still on the interstate. Whatever I say could trigger her.
I can feel her staring at me, waiting for an answer. But I am resolute. We are not going to go through this again. She gives up and looks out the window.
I am fifty million shades of a hundred thousand different emotions as we pull into the garage.
As I help her out of the car, she asks me what’s wrong.
I should have taken a breath, but it just flies out, “We just spent an hour and half in Milwaukee with you yelling at strangers that I was trying to kidnap you. I know it’s not your fault. I know you can’t help it. But I’m sorry. I’m fried and a little hurt. So I’m sorry that I’m not myself.”
The look on her face was *not* one of complete lack of recognition like she sometimes gives when someone asks her if she remembers something. It’s not blotto.
The look she gives me is one of total recognition weighted heavy with regret.
She pauses. I can see her stomach dropping to the floor.
“All I can say is that I’m sorry. I don’t know what happened.”
“It’s okay,” I say. I move toward her and she buries her head into the crook of my neck. She grabs on to me like I’m the only thing holding her here. And we stay that way for a minute. Maybe two.
There are two hours left in my week. Two hours before Claudia gets there. I’m exhausted and edgy. She can tell. It’s great.
I skip sitting down with my parents for dinner. I just can’t. I need some space. Plus, all the stuff I wanted to get together to take with me back to my apartment for the weekend is still scattered everywhere. Literally.
Finally, at about 6,40, we’re sitting in the family room and I realize I’m not going to see her for three days. This isn’t her fault and whatever I’m feeling is my baggage, not hers.
So I ask, “do you want to come snuggle with me on the couch?”
It takes her a couple of tries to understand what I’m trying to say. But she moves over to the couch and snuggles in. We sit like that until Claudia comes.
I cry quietly. Tears a
roll down my cheeks. Snot threatens to drip out of my nose.
I tell her I love her. “I’m heading back to my house for a few days. But I’ll be back,” I say.
“I hope so,” she says.
“I will. I love you so much.”
“I love you, too.”
I say goodbye to my dad and when he asks when I’ll be back, I jokingly say never.
The longest week we’ve ever had together has come to a close. We’re all exhausted.
Alzheimer’s has kicked our asses this week. I mean that literally. Pounded us into the ground time and time again. My body is literally battle-worn. I can hardly bend over. I have a bruise on my leg from where she kicked me.
But here’s what I know…This, this right here, this is what love is. It is unconditional. It is hard. It is fierce. And it happens despite everything. Or maybe because of it. It is a force with which to be reckoned.
Alzheimer’s can knock us down all it wants, we will always rise again. We will always be here standing resolute in love.
This was from earlier in the week.