Dreams, Darkness, and the Final Inning

Sunday, August 23, 2020.

It is 3:30 on Sunday morning. I am sobbing. I woke up this way. A dream so dark and black and lonely that I started sobbing in the dream and dragged the darkness to the surface with me.

A dream so isolating and utterly desolate that sobbing is the only thing I can do to try to dissipate that darkness.

In the dream, my mom is sitting by herself. On a train. By the window. Something has happened but I don’t remember what. But it’s something that has caused her to be ostracized. Laughed at. Something that she couldn’t help. Couldn’t change. But something that is nonetheless a part of her now.

I get the sense that not only had I been bullying her, but also that I had a complete lack of understanding about how it felt to be her. To have this thing happen to her.

I get the sense that I am a huge part of the reason she is now alone on the train wearing her sunglasses to cover up her tears. But they escape from under her glasses anyway and slide down her cheeks. Whatever it is that has happened, she is broken. Utterly and completely devastated.

I look at her. Taking in the way she is sitting. Understanding that she is trying to shrink into her seat so that no one will recognize her and mock her all over again. I am slammed with guilt. I can’t breathe.

Every mistake I’ve made the last six years. Every bit of every piece of every mistake, lack of patience, snippy responses, every instance of my inability to climb in the boat with her, every second of lacking empathy. Every single time my irritation got the better of me. Every time my words flew out of my mouth before I thought about what I was saying. Every mistake. All of them. I remember all of them and they are steam-rolling me.

And suddenly, I know unequivocally that she remembers them, too.

I walk to her and sit next to her. I take off her glasses so I can see her eyes. They are a mixture of pain and love and hope and fear and hatred and sadness. But they are predominantly filled with confusion.

There is a moment where neither of us breathes and then she takes my hand like she always does. She pulls me closer and rests her head on my chest.

I whisper that I am sorry.

It’s all I can think to say.

But what I want to say is that I’m sorry I wasn’t a better person. I’m sorry that I wasn’t cut out to be a caregiver. I’m sorry that I failed you at least once a day. I came up short in my own expectations, so I know I fell well short of yours. I’m sorry that so many times in the middle of the night I didn’t let you be you…instead begging you to sleep and telling you that we couldn’t keep doing this. I’m sorry that I made you feel badly for all the things you couldn’t help. I know I did. You know I did.

I’m sorry that for all the great times we carved out the last six years, in the last two, we had so many moments where we didn’t understand each other, where we didn’t connect, where you got frustrated and I got impatient. I’m sorry that sometimes at the end of the day, I felt relief that you were finally in bed and I could breathe for the first time all day.

I’m sorry for all those times we’d just gotten ourselves buckled into the car and you said you had to pee and I couldn’t contain my disbelief and frustration.

I’m sorry for all the things we had to do to keep you going…all the breathing treatments and medications and percussion vest treatments.

I’m sorry for all the times you must have felt small because you didn’t get a choice. I’m sorry for all the times I told you had had to do something and you said no and I made you do it anyway. I’m sorry for all those times I spoke to you like you were a child and I your parent because the truth is, you have never stopped being the parent.

I’m sorry for all those times, and there were more than I want to admit, where I was a horrible human being, an awful caregiver, and a crappy daughter. I’m sorry that caregiving for me has been such a beautifully cruel dance between getting it exactly right and being an asshole.

I’m sorry that I couldn’t do this the way you would have done it…with a heart always filled with love and patience.

That’s what I wished I’d said.

But instead, all I could say was I’m sorry.

She starts to say something and that’s when I wake up.

Sobbing.

Suddenly, I don’t want to live past our goodbye.

The guilt is crushing.

The depression real.

The exhaustion disorienting.

I’ve had dreams like this before. Where I wake up sobbing. They are always dreams where my mom has died. But in reality, she’s always been very much on the life side of the equation. And I’ve been able to check myself back into reality with that knowledge.

But I realize in this moment that the next dream I have like this will be in the after. She won’t be with us anymore.

I start sobbing all over again.

It’s not a surprise to me that I’m feeling all the things I am.

As my therapist said Friday, I have never been under more stress in my entire life. And that’s saying something. My auto-inflammatory and auto-immune issues are in almost constant flare. In addition to a plethora of issues including joint swelling, pain, fatigue and fevers, I’ve got rashes…quick and dirty. They happen from taking a shower, sweating, being in the sun, being hot, being cold. They burn and itch for an hour, sometimes longer and then they go away. This has been happening everyday for the last two weeks.

This stress, plus my mom’s decline has caused me to start using food as a crutch…again.

If you know me, you know for years I dealt with anorexia and bulimia. Food was an obsession…the denying of it meant control. The eating of it was filled with pleasure. An addict. And lately, I haven’t been able to stop thinking about it, stop shoving it in my mouth. I’d eat dinner. Then dessert. Then another dessert. Then another dinner. And more dessert. If I was at my parents, I was heading to the fridge and just shoving food (anything) in my mouth for the dopamine rush of it.

Consciously doing it. Guiltily doing it. Shamefully doing it.

Honestly. I’m a mess. But I’m admitting it and getting help.

And then, Thursday.

Thursday our lady’s oxygen levels dropped into the low 80s. She became agitated and spoke gibberish. She was still in the palliative part of the hospice program, so while we called hospice, there really wasn’t much we could do.

We really did think we were heading into her final at bat. And I started to re-live the last six years. The great times, the soaring emotions, the bad times, the ugly, and the everyday.

But her oxygen levels start to come back up after turning her machine up another 2L. In that moment, it wasn’t about prolonging life, but about providing comfort. And it did. Her agitation calmed.

It was a wake-up call for us, though. We were completely unprepared to help her in these moments. Moments that will increase in frequency as the infection she can’t fight takes over. As her disease progresses.

The Hospice Alliance was amazing. They called first thing Friday morning to begin the process of admitting my mom to the hospice part of the program. I had an appointment scheduled with my therapist in the afternoon and they understood how important that was, so they came out well in advance of that.

By Friday at 5:30 p.m., all their equipment was delivered. Modified wheelchair, hospital bed, a new oxygenator, and portable tanks.

When I got home at 6:30, a hospice nurse was already on her way to teach me how and when to administer comfort medications.

By Friday night, my mom was back to herself…usual, unusual, but coherent.

We all (me, Dad, and the caregiving team) collectively breathed a sigh of relief for the gift of more time.

But we know that somehow we flew right past the seventh inning stretch and wound up in the ninth without even realizing it.

After Thursday night, we get that we are taking our last at bats. Our time together is much shorter than we thought.

But no one wants to see her suffer. No one wants her to be in discomfort and agitation not being able to breathe more than we want her to be at peace. And if at peace means not in this world, as hard as it will be to say goodbye, then that’s what it means.

If my dream has given me any wisdom, it’s that. I’ve made so many mistakes the last six years that can’t be changed, but can be learned from.

I’m determined to do this part right, to help her say goodbye with love and strength and a calmness I don’t normally possess.

So here we are, in the final inning, flying blind, but with guidance from hospice nurses and doctors. And trying desperately to keep our home and hearts filled with hope and love.

The Talk

July 15, 2020

When we first found out about my mom’s prognosis, I was talking to my best friends. And Suzie, looking on the upside of things, said that it was good that we had time. That way, she said, you can tell your mom everything you need to say.

And I kind pshawed it saying that I think I’ve pretty much said it all.

But then Monday came around.

I went to get my mom up around 1:30, per the norm. Maybe it was a little early because we had to leave so I could get a Covid test for a procedure Wednesday.

She was her usual smiley self waking up. (I so did not inherit that from her, I snarl and I’ll bite your hand off.). She lollygagged a little and then sat up.

Sometimes if I forget to sit down and badly sing “Baby Mine” from Dumbo to her, she won’t stand up. Which was the case on Monday.

So she sat. And stood. Waiting. Until I remembered.

I sat down next to her on the bed and she snuggled in. Bad rendition of “Baby Mine” complete, my mom wiped her eyes.

She was crying.

My mom.

My iron mom.

Crying.

I didn’t say anything, I just sat there. Dumb.

She dug in like a tick snuggling her head into the crook of my neck and pushing her whole body up against mine. Unwrapped my arms around her trying not to cry.

Failed.

But then the words just started coming.

“What an amazing life you have. You know that, right?”

She nodded.

“I couldn’t have asked for a better mom…a better best friend. The perfect Louise to my Thelma.

“OMG the things we did! The trouble we got in.

“You remember that time we drove from APT to the Dells when it was storming? There were trees down all over the road and the wind and the lightning? And Dad told us how crazy we were because there had been wind shears in the area? And we were all like ‘What were we supposed to do? We had nowhere else to go’?”

“Or that log cabin in Mineral Point? With the loft? Where every time we had to pee in the middle of the night, we had to climb down that treacherous ladder?”

I laughed through tears I really didn’t know
were there until that second.
“Oh man the times we had! How many plays have we seen? At least a hundred?”

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She nodded. Maybe we had. Maybe we hadn’t. But we’d sure seen a lot over the years between musicals and plays in Milwaukee and Chicago with my dad and plays at APT just the two of us. If we hadn’t, she sure has with her annual ladies trips to Stratford, Ontario to see Shakespeare and Shaw.

I stopped. I had to wipe my nose.

“I’m not sure why I’m crying,” I croaked, “but my nose is really running.”

She waited.

And then she started rocking.

“Do you remember the hours and hours and hours we used to swing on the green swing at the lake?” A bench swing between two trees facing the lake. I’d lay my head on her lap and we’d swing. She’d sing. I’d eventually fall asleep.

“I’m really not sure if you really liked to. I kind of figured out that this was probably the only way you could get me to nap.”

She rocked a little harder.

“And all those picnics we went on? To Boyscout Island? Those were the best. I fell in love with turtles and orange Kool-Aid there.”

She’d pack a lunch for my brother and her and me, and we’d load the paddle boat up with our supplies. And she and my brother would paddle over to the island. I don’t know that it was truly an island so much as an undeveloped hill on the lake maybe once used by Scouts. It was sandy gravel and turtles liked to come up and lay their eggs. You couldn’t get there with the ski boat so it had it to be the paddle boat. And that was a lot of work to paddle that far.

“Oh man and the hours and hours and hours you spent sitting in the boat, driving us around just so we could ski for hours on end.”

I could hear her in my head then, saying, “that was just part of being a mom.”

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“Oh and the hours and hours and hours you spent dragging us up Wilmot Mountain on the rope tow just so we could learn to snow ski? Man, you must have had wicked arms!”

She stopped rocking.

I had no idea whether she remembered any of this. But that was my job now, to carry it for both of us.

I laughed then. Because if I didn’t I would start full-on sobbing.

“Oh my God, that trip to New Mexico! Hahahaha!”

She put her head up and turned to look at me with a question on her face…some spark maybe. Then she settled back into the crook of my neck.

“When we tried to get to Taos, and you were navigating? And somehow instead of taking a turn for a different highway, we went the wrong way and wound up down some one lane dirt road by the river? And there was that angry guy with a gun? Jesus, what were we thinking not turning around sooner?”

We couldn’t, for the record. The whole road was a slope and we were in a rental car. The guy was pissed we were on his land, which I totally get. It was one of the very rare times my mom acted like a total ditz. He turned us around and we split. Only laughing when we were back on black-topped road.

Mama Bear always.

“And then we almost started a fire in the room when we thought a fire in the fireplace would be perfect with the snow in Santa Fe?”

I laughed again.

“Leave it to us not to check the damper!

“The O’Keeffe museum was amazing, wasn’t it?” She nodded.

“Oh and remember when we went up to Los Alamos to see where Fat Man and Little Boy were created? Oh man, that road, I was so freaked out and you kept telling me to hush because I was making you nervous driving? And then we pulled over because you needed a break? Those pictures we took were awesome!”

I paused. She didn’t move. Waiting.

“I think New Mexico was my favorite trip. Though, Pennsylvania was pretty great, too.”

“I know you weren’t feeling well…”

The Pennsylvania trip in 2001 is when the constant infections she’d been battling in her lungs reared its ugly head. She’d not been feeling great but wanted to go anyway. We were spending the night in the middle of Pennsylvania between Mill Run and Uniontown.

She’d had a couple coughing fits. Seemed okay and we turned out the lights. She’d gotten up to go to the bathroom and started coughing. And then went back to bed. But when I got up a few minutes later, there was blood in the sink.

So I turned on the lights. She’d not wanted to make a big deal. But there was a decent amount of blood. She said her pulmonologist had told her unless it was a Coke can full, it was okay.

I was not convinced.

We drove back to Uniontown. Spent the night at the Emergency Department. They called it a lung infection. Put her on an antibiotic. And sent us on our way.

“You were such a trooper wanting to continue our trip even though you felt like crap. Falling Water was amazing. And so was the other house, Kentucky Knob.”

“I’m so glad we got to do all those things.”

She’d already been there with my dad, but I had (and still do) a small obsession with Falling Water. She’d fed it heartily.

“But then, I bet Alaska was your favorite trip. Dad says it’s his. I can’t imagine how beautiful that was. And two whole weeks just the two of you. How crazy awesome was that?”

She nodded again.

I’d said something then about our annual trip to Florida pulling the ski boat through the Smokies and singing to the Outlaws. I started singing “Put Another Log on the Fire.” She swung her leg to the beat.

The singing was actually to keep the tears away but as soon as I stopped, they really started to flow.

“I’m not sure why I’m crying. Silly me.” She pushed in closer.

The fans had been blowing on us. I moved my hand up her arm and her skin was cold. I grabbed her fuzzy blankie and wrapped it around her and she tried to make the non-existent space between us even more non-existent. She started swinging her leg again.

“You are such an artist,” I said. And her leg stopped swinging.

“With the painting, and the needlepoint, the calligraphy, and the cross-stitch. Oh man, my tree skirt is a masterpiece! And all the scrap books!

“Man, you’re a busy lady!”

And you were at every concert, every game, every play and musical and track meet. And jeez every single water ski show and tournament. You were there for everything. You didn’t miss a single thing. You just have been exhausted.”

She nodded.

And it occurred to me then, sitting there holding onto her, she burrowed in for safety, that we’d been here before. At a precipice of life change, except my mom had been holding me together. And I knew how I’d felt then, someone else holding me together. How safe it had felt.

So we just sat for a few minutes more. Rocking. Silent.

And then I asked her the one question, I had left to ask.

“Your life has been amazing.”

She nodded.

“Would you change anything?”

She stopped rocking.

Head burrowed into my chest, she shook it hard.

“No…. No.”

And just like that I had no more to say.

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Help! Help! She’s Trying to Kidnap Me!

Our day starts like most of them have the last couple of weeks. 

With unknowns. 

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?

Without crying? 

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.

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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.

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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.

“Why’s that?”

“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.

And then.

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.”

Her: “Why?”

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. 

Total non-starter. 

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: “Okay.”

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.”

Touché.

“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.” 

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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. 

Seriously.

So I call it.

1.855.227.3640

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. 

Alzheimer’s.

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?”

“No.”

“Any duct tape?” 

“No.”

“A towel?”

“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.”

“Okay.”

“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.”

“Okay.”

“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.  

Always.

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This was from earlier in the week.

Caregiving

This day began Sunday at 4:30 am. It is as long as our longest day together and getting longer.

This morning after zero sleep, my lady insisted that we “get to Twin Lakes.” The kind of insistence that cannot be distracted. So we piled into the car in pajamas to go to Twin Lakes.

I dreamed of donuts on our ride. Of Bode’s delicious donuts. Exhausted. But donuts.

But Mom. In one of those moods where listening is more of a mild suggestion. So I asked her to stay in the car. Locked the door and went in.

Hey. Oh. Yup. That’s my car alarm.

swear

As I ask her to please please stay in the car, some part of my brain wonders why I want these donuts so badly. But I do. Maybe I need the dopamine rush. Still. They’re out of reach because I know she’s not going to sit.

So I’m about to get in the car when a woman with her young son offers to watch my mom while I grab donuts after I explain about the Alzheimer’s and not sleeping.

OMG. Really? Who are you guardian donut angel.

But wait it gets better.

So I stand on line, anxiety flaring bc it’s Bode’s and it’s packed.

I turn around and watch this kind angel soothe my mom and keep her distracted.

When I come out she tells me she’s a nurse. Or maybe she did that initially. Either way she asks some more questions. I tell her about being on palliative care. And she’s full of ideas of different combos of meds that might help. She truly was a godsend in the moment, in the day.

We drove back to the house and my lady was no less anxious and off the chain than when we left. But what are you going to do besides swear, be frustrated and just try to roll with it?

She keeps forgetting who I am. So I’ve come up with an alternate persona. My name is Sam. I’m a caregiver. She talks about her 8 year old daughter, Lora who would love my hair. And about how her mom is still up north. She laughs when she says that Lora likes to dance.

Because she’s so antsy, I decide to take her to the beach before my rheumatology appt today.

So we’re there like maybe five minutes and I look up and see someone who looks so damn familiar…from afar.

Hello, Bestie!! Just what this heart needed. A hug, a conversation. Time spent just together. It was another godsend moment.

And then it started to rain. So we left. We stopped at my apartment to pee and quick change clothes before heading to my appointment.

But my lady had other plans. Remember about listening being a mild suggestion? Yeah, so I asked her to stop and wait for me while I locked the door.

She didn’t. She performed the most amazing dismount from her walker I’ve ever seen. There was a spin even.

Problem was the wall jumped up and cracked her head …twice.

Out. Like. A. Light.

An ambulance ride later, we have been at Froedtert for five hours and counting. Everyone has been amazing.

For my lady’s part, she is fiesty as hell and ready to go. She’s asking for my dad who can’t be here because visitors are limited to one.

For my part, I’m exhausted and ready to eat my own arm.

She has a concussion…We’re waiting on the results of a CT scan to determine if the compression fractures in back are from today or older and if she needs a brace.

I’m sure she’ll be fine in the end. She’s Teflon, after all. That’s her superpower…well, one of many.

We still have to drive back to Pleasant Prairie, do meds and breathing treatments and then see if sleep will join us for the night…even for a little bit.

I’ve never felt more ready for Thursday night when Claudia comes on duty.

But it’s Monday so I’ll day dream about donuts and the beach and sleep. And I’ll thank God for the small gifts of today.

#caregiving

Anger in the Waiting Space

Tuesday night, I was angry. It wasn’t all day and it wasn’t for very long. And for a hot minute, I couldn’t really figure out why.

Earlier in the day, my friend Dan had sent a link to a tweet from someone who followed me. She’d taken a photo I’d posted of my mom painting and added the caption “A virus that is particularly threatening to the older generation continues to loom. Yet up and down the country, life goes on.”

Uh.

Yeah. No.

Just no.

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She claimed because it was in the public domain, it was free for the taking.

Um.

Yeah. No.

Just no.

It was a fairly quick interaction. Invasive. And stupid. But quick and dirty.

Still given that we’d just signed up for palliative care through hospice…life wasn’t just going on. So my anger lingered.

I went about the rest of my day. But when my mom chose to take her pills orally versus having them crushed and put in pudding, and then refused to take them, I got snarky.

It’s an old frustration. Her doodling around and tossing her pills on the floor in lieu of putting them in her mouth. It’s not that she doesn’t want to take them, it’s that she knows she controls the situation. She knows I wait on her to take them. And she knows I can’t go anywhere until the pills in her hand go in her mouth.

We’ve been doing this dance for four years.

But Tuesday night, I found myself more irritated than I normally am by this dance. I was actually a little angry. Still.

And when she finally had swallowed the last of them, and she was doing her nebulizer treatments, I sat back and let out a long sigh.

Why today, why this moment, why did that make me angry?

My answer is this: I’ve had moments where this disease has pissed me off. But I don’t think I’ve ever really moved through the anger stage of grief. I’ve never really gotten angry over the slow, plodding, destructive loss of my mom.

And Tuesday night was the culmination of a few days of building anger. Sunday night my mom had been kind of a dick.

There are times when she’s a dick and she doesn’t know it. But Sunday night she was an intentional dick full of sarcasm and meanness. At one point at 2:30 in the morning after she told me I was funny looking and had really never been a very nice person, I told her that she was being an asshole. To which she laughed and said, “Oooo you said a naughty word.”

I laughed. But still, I was angry. Angry that we were still up at 2:30 in the morning. Angry that she was being a total dick. Angry, in that moment, that this was my life and I hated it.

So Tuesday night after having to protect her and her image from some clueless hack on social media, it seemed like just one more thing on the long, long list of role reversals we’ve had.

And that, that pissed me off.

Everything was pissing me off.

I’m angry that she’s more my kid now than my mom. I’m angry that the disease made her dependent on me. I’m angry at myself for being angry about that. I’m angry about the thousands of moments and memories of a lifetime that were stolen by Alzheimer’s. I’m angry that we missed so much these last six years. I’m angry that my parents together have missed so much.

I’m angry that this happened at all.

I’m angry that she got sick before I was born, double pneumonia that left her lungs permanently scarred. I’m angry that there wasn’t enough time for my parents to travel like they wanted to when my dad retired. I’m angry that the woman who’s held me together, kept my feet on the ground, now sometimes doesn’t know what feet are and doesn’t know who I am.

I’m angry that we’re nearing the end of this journey and sooner than any of us would like. I’m angry that we’ll have to say goodbye.

I’m angry that we’re in this place now. This waiting space where we don’t really know how to be or act or what to say, or think, or feel.

I’m just mad.

Damn hot.

Everyday I wake up now and I feel it. Anger. And angst. And the question that hangs over us…is today the day? All day long, every single day, I wonder is this the last time we…?

So Tuesday night when I got short with her, I was hit by a ton of guilty bricks because what if these were the last words and emotions she had from me?

Truth be told, I think this a hundred times a day about everything. Last time I sing Baby of Mine when she wakes for the day? Last shower? Last time I hand her her toothbrush? Last breakfast?

I’m driving myself fucking insane with guilt and anger and resentment and anticipatory regret and sadness and all of the 50 million emotions crashing into me all day long in this damn waiting space.

As my dad said this week, we are wound up tight.

There are a ton of books out there on hospice and end of life. And living well on hospice. I took a class on living and dying in college by a professor who helped bring hospice to Kenosha. I get the five stages of grief. I’ve lived through them through the loss of a best friend, grandparents, a brother.

I get them. I understand them.

But here in this waiting space, I’m not sure how to process this kind anger. Virulent and persistent and never-ending.

It’s a space where death is impending, perhaps imminent, but we just don’t know. A place where we’re constantly trying to fend off her infections. One where her cough is constantly wet and productive. One where we’re constantly wondering “is this an infection? Is this what will send us to the edge and over?”

It’s a space where you can’t help but get teary when your lady reaches out, grabs your hand, and says, “I love you” spontaneously. A place where we take more pictures. Try to pack more in. A space where you never quite feel like you’re on solid ground.

We’re standing with a foot in both worlds.

And that makes me angry.

The unknown is so piss worthy.

We have our foot in one world that’s a complete mess. I mean in the long run, the Black Lives Matter movement is going to save us all. But not before COVID-19 kills too many of us.

The virus is cramping us, keeping us isolated when we should be adventuring and celebrating. I feel stuck. She is antsy. My dad is wound up tight trying to hold everything together.

And that ticks me off. It shouldn’t be like this.

The other world is one that only she is traveling to. It’s a giant unknown. But it’s a world that most people hold faith in. After all, could anything be worse than our current reality?

But this other world, the one where she goes, it means that she’s gone and we’re left holding all the pieces in our present reality.

And that makes me so damn mad.

Resentful.

Full of crushing sadness.

So.

What happens now?

Since our world came to a full-stop and then immediately kicked into a different gear, I’ve been trying to wrap my head and heart around these weird and complex feelings that come with being in the waiting space. Trying to deal with pure and unadulterated anger.

Just a few weeks ago, we were running a well-oiled machine. One filled with caregivers and laughter and hope and love.

Just a few weeks ago, we were doing our thing. Just a few weeks ago our normal was…normal.

Now, though, with a relative timeline to the end of our family’s journey, to the end of my mom’s battle with Alzheimer’s, our well-oiled machine feels like the wheels are shredding and the engine is being held together with duct tape. Our laughter still happens but it’s colored with sadness. Tears of anger and sadness happen at the drop of a hat.

There is no more relatively unencumbered emotion. There is no emotion that isn’t colored with at least a tinge of anger or regret or sadness.

And I get it. My therapist will say this is normal. It’s normal to be angry in this space. She will say that we have to work through this by acknowledging it, by pinpointing what’s causing it.

She’ll say this because anger is a secondary emotion. There’s a primary emotion that causes anger no matter how quickly we cycle to it, there’s always an emotion that precedes anger.

Always.

So what’s my deal? What’s preceding my anger?

In a word: fear.

It’s fear.

Paralyzing. Anxiety-inducing. There’s a serial killer locked basement in the basement with you.

Fear.

I’m scared of everything that comes with being in the waiting space…of all the “normal” emotions…loss, emptiness, sadness, depression.

I’m scared of all the emotions that people don’t talk about…relief, frustration, resentment…hope.

I’m scared of the guilt that comes with the unspoken emotions.

I’m freaked out about what happens after this is over. Who am I then? What will I do?

I’m terrified of this isolation we’re in. It’s really just the three of us in this emotional tub. I feel like I’m losing touch with my friends. People don’t know what to say much beyond I’m sorry. I don’t want to see people because the second they ask how I am, I lose it.

And that’s okay. But there’s just a heaviness there that wasn’t before and it’s making it hard to connect and stay connected.

But weirdly, or maybe not, my biggest fear is fear of the loss of my anger.

Because if I lose the anger, I feel like this whole precarious tower of barely holding it togetherness crumbles into a steaming pile of crushing sadness. If I lose the anger, my anxiety will come screaming back and I’ll wind up in my closet, burying myself under all the crap there trying to hide from the panic.

I’m afraid of cracking.

The fear is not just in me. It’s a part of me. It’s been part of who I am for six years now. It causes panic attacks and anxiety. And for awhile, turning it into anger seemed to keep some of those fears and anxiety at bay. But now I just feel guilty for being angry. Even if it doesn’t outwardly come out in my interactions with my mom or my dad, I definitely feel it coloring everything.

But it also energizes me to keep moving. To get up in the morning after a sleepless night (and there are always sleepless nights) and do my job, make sure my mom is cared for and loved. And to make sure she knows it.

If I have an enemy to battle (Alzheimer’s and all the shit that comes with it), then I can’t stop. It’s not in my nature to stop. No matter how tired I am. No matter how cloudy my thoughts are from sleep-deprivation.

I need that. I feed off of it.

So.

Maybe.

Just maybe.

The challenge here isn’t to try to make the anger go away or dissipate. Maybe fighting the anger and the Alzheimer’s is too much. Maybe the fighting is the problem.

Maybe there’s a way for anger and I to co-exist in this waiting space without destroying each other.

I really don’t know. But I do know that I can’t keep ripping myself to pieces because I’m pissed off about everything and then pissed off at myself for being pissed off and then guilty about that because it’s coloring everything else I do.

It’s exactly the opposite of the headspace I should be in during the time we have left. And that has to change.

Somehow.

 

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Devaluing an Alzheimer’s Life

I’ve been thinking a lot about how others value or put value or devalue the life of a person living with Alzheimer’s. It’s not really something I put a lot of thought into before these last couple weeks.

But after telling my dad, we reached out to everyone else that should know to tell them what was happening.

We did this by email.

Most people responded. Pretty much all expressing sympathy or empathy.

All but one.

And the conversation via text, edited to remove identifiers, went like this:

***

Person: “Thank you for the very heartfelt email and for all you’ve done for [Yvonne]. How are you doing?”

Me: Destroyed. Fine. A mess. Mind going a hundred miles an hour. Probably about like you are, I’d guess? Trying to pull it together [ ].

I don’t know how you manage it, but I think it’s time to [visit].”

Person: “I’m sad but have known this day was coming sooner than later. [She] has not had the quality of life that she would’ve wanted for a long time now. I can still hear her telling me on numerous occasions (well before she got cancer) to not let her live the way she’s living. So, in a sense I’m relieved for [Yvonne]. She’s been a shell of a person for a long time now and I said goodbye to her the last 2 times as if it’d be the last time that I see her. I never expected her to still be here today. I think this is easier for me being further away than for you [Don] when you’re living it day after day.”

***

This person went on to say that they’d disagreed with decisions my dad and I had made, with my mom’s input and agreement, to better her quality of life (cochlear implant, hernia surgery, etc.).

Damn.

A shell of a person for a long time?

Never expected her to to still be here?

Wow.

Not had the quality of life for a long time?

That’s harsh.

I admit at first I was pissed. And then I laughed.

What was this person saying? That we should have somehow figured out a way to euthanize her? That we should have somehow neglected to take care of her? Not fed her? Somehow actively worked to take away her will to live? Worsened her quality of life to shorten her life?

I really don’t know.

So like I said, then I started wondering about the devaluation of a life lived with Alzheimer’s. Because it seemed that in a few words, this person had devalued my mom’s.

Had it been meaningless and without value? Was it sad and pathetic? Or does she have a greater purpose?

If you know me at all, you know my answer.

But this person had me doubting myself.

My definition of quality of life was something I’d never thought about before my mom got sick. Quality of life really wasn’t a choice because, in my mind, we lived until we died and that was kind of that. So you sucked it up. Shuffled along knowing every day was a new day.

When my mom got sick, of course, sucking it up really wasn’t the goal anymore. In the first two years after diagnosis, though, everything was almost normal. So we didn’t really think much about quality of life because while she, like all of us, had her moments, she laughed and loved. Hard.

She knew something was wrong with her, but she got up everyday and did her normal everyday things, just sometimes with a little help.

But then she progressed and the question had to be asked: What is our goal here?

Quality of life was the answer. Our goal was to give her the best quality of life she could possibly have for as long as she showed us that she wanted to be here.

That hasn’t changed.

But what did that mean in practice? And this was what we came up with: Can she still receive and give joy?

If yes, then: is that receiving and giving of joy more often than not? In other words, is she able to get out and do, get out and live, laugh and love?

Or is she mostly miserable with moments of joy?

And until these last few weeks, the answer for my mom had always been yes. Yes, she was getting and giving more than she was out of the game.

She still laughs. Still loves. Still participates. But those moments are decreasing rapidly. We see it everyday now.

But.

We haven’t been going along this six year journey blindly propping her up like the corpse that was Bernie in “Weekend at Bernie’s.” We’ve asked her. She’s weighed in.

Logically, someone who is only with her rarely and then only for a few hours at a time couldn’t really see my mom’s quality of life better than someone who was with her constantly. Could they?

I posit that the answer is no.

But it wasn’t like this giving and receiving joy standard was applied once and only once. It was a constant question. Are we doing right by her? Is this the right thing? And we were asking her. Mom, here’s the situation, what do you think?

I think if you asked one hundred people, who’ve never had any experience with Alzheimer’s, if they’d rather be diagnosed with terminal cancer with only a month to live or Alzheimer’s, you’d probably get a mixed bag. Some would want to go quickly. Some would maybe see Alzheimer’s as a gift of time.

If you asked one hundred family members of people who have Alzheimer’s the same question, one hundred percent of them would say they’d rather have cancer.

Still.

Death is devastating.

I’ll say that again.

Death, any death, is devastating.

Death is loss.

Death is heartbreak.

But Alzheimer’s is a slow march into the depths of nothingness.

It is not quick. It is not forgiving.

I’ve heard Alzheimer’s called “the long goodbye.” This sounds so pleasant. I think it’s better called “the protracted and lengthy, gut-wrenching loss of a loved one.”

So now I’ve said that. That seems confusing. Right? I don’t want Alzheimer’s. My mom didn’t want it. But here we are six years later living with Alzheimer’s.

This person’s comment about my mom not wanting to “live like that” stems from the book “Still Alice” which is a somewhat terrifying fictional account of the thoughts and actions of a woman with Alzheimer’s.

I read it.

It terrified me.

I’m sure they discussed it. Who could read “Still Alice” and come out the other side saying, “Sure. No worries. I wouldn’t mind living like that”?

I know full well that had my mom known what the result of chemotherapy was going to be, she would have chosen not to treat it. Instead, knowing her, she would have planned a vacation, one she always wanted to take. She would have spent time with her greatest love, friends, and family. She would have tackled a pile of books. She would have said everything she needed to say.

But here’s the thing: In this life, we don’t control the hand we are given. And we are not psychics.

She did not know.

We did not know.

We all thought this would be okay. She’d go through the hell of chemo and life would pick up where it left off.
But it didn’t. And instead we were left with an unknown hand.

What were we supposed to do?

Withhold food? Neglect to give her medications? Neglect to get her medical treatment? Not do anything to improve her quality of life? Not strive every day to live our best lives? Not love her or keep her safe?

Not one medical expert has ever advocated for that until now. Until right now in this moment, not one has ever said that it’s time. Even weeks ago, when we were in the emergency department, there was never a question of whether or not to treat, but what was the least invasive way to do so given Covid-19.

The hand we were dealt wasn’t the hand anyone wanted. It wasn’t the hand any logical person would want.

But it was the hand we got. And so we played it. For six years, we played it.

And let’s be clear, we were never going to beat the house. The game was always rigged against us. It was designed so we would lose.
But I think, like everything in life, you have a choice. Not the choice to choose your hand. But the choice in how you play it.

The choice we made, collectively, was to play our hand filled with love and hope. We played our hand, stealing laughter and adventure from the Alzheimer’s dealer.

We played our hand always assessing whether our next turn would improve or negatively impact quality of life.

We played our hand following my mom’s lead.
People have a will to live or they don’t. People are either attached to this world or they aren’t.

In my mom’s case, she’s filled with it. Even now. The other day I flat out told her that her lungs were shot. That they weren’t working the way they were supposed to anymore. I told her it was going to get harder and harder to fight off infections.

Her response?

“Well that really sucks.”

Further, right before she started chemotherapy in June 2014, she apparently bought my dad a Father’s Day card. We found it just the other day in her jewelry drawer.

Mom mom loved quotes and sayings. Adored them. Cut them out, taped them to the bathroom wall, the shower door, your bedroom door, put them on the refrigerator, and filled up a notebook with them.

So in an envelope inside this card was a little cut out saying.

Here’s what it said:
“There is no moment of my life when you are not a part of me; you hold my heart; you guard my soul; you guide my dreams so tenderly.
“And if my will might be done, and all I long for could come true, with perfect joy, I would choose to share eternity with you.”

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I mean, damn. Right? Here’s a woman about to start chemotherapy telling her husband of fifty-seven years that she wants to live, for them. For them, she wants to live.

And I don’t think that’s changed. Until now, here at the end, I don’t think that ever changed.

If she’d have stopped eating or stopped getting out of bed. If she’d have stopped showing an interest in life and not just stopped showing an interest in things her brain could no longer do. If she’d have let go at any point, as hard as it would have been, we would have, too.

But she didn’t.

The smile she still has for my dad? It lights up the room. She still wants his kisses and hugs; and sometimes, she won’t let go of him.

This isn’t the life she wanted. It’s not the life anyone wanted for her. But it’s the life she got, it’s the hand we were dealt. It was the hand we played.

So because we collectively played the hand she didn’t want, does that mean her life had no value or meaning or that she was really just the shell of a person?

Here’s my answer.

Lives lived with Alzheimer’s have incredible meaning. They give. They participate. They teach. They love. They live life more fully than a lot of people ever will.

I would argue that my mom’s life has had, and will always have, more value than mine. The things she accomplished before Alzheimer’s were incredible. But the things she has accomplished after diagnosis are equally so.

I would also argue that she has given more to the people she’s spent time with in the last six years than some people will ever give. She’s always led by example, but never more than the last six years. I would argue that this is true for most people living with Alzheimer’s.

I’m not rationalizing. I’m extrapolating.

You can’t throw people away when the life they lived isn’t the life they have anymore. If that was the case, what would happen to human souls with special needs? To older folks with increased care needs? To people who get into life-altering accidents?

So does this alteration in life’s path mean that our friends and loved ones living with Alzheimer’s are shells of people? Is my mom a shell of a person?

My short answer is: No.

No. They are not.

My longer answer is: No.

But…

But at the end of the disease, when the brain has been completely ravaged, when people with Alzheimer’s are actively dying, when they can’t eat, walk, or move, then probably yes.

But. Is my mom the shell of a person? Right here? Right now?

No. No, she is not.

Is she the same person as a year ago?

No.

Is she the same person as before she was diagnosed?

Oh, hell no.

But a shell? Legit LOL. No. No, she is not.

On one recent Tuesday in the car, she was singing along to our playlist. Singing “Clementine,” “The Wheels on the Bus,” and “Yellow Submarine.”

She held my hand. It wasn’t me reaching out and grabbing hers. She reached out and grabbed mine. And when I’d need to put my hand on the wheel, she’d reach out and hold my arm until she could have my hand again.

Part of our conversation went like this:

Me: You’re my best friend.

Her: *smiles*

Me: Will you be my best friend?

Her: *gives me the “mom look” like how did I raise such a weird kid?*

*puts her finger to her chin in a dramatically thoughtful fashion*

Her: I’ll think about it.

Me: Ouch! *and then I laughed*

She smiled that wry little smile of hers and I laughed harder.

It’s just one example of thousands over the last six years.

She’s not a shell.

Not even now here in the home stretch.

We actively engage in life every single day. We laugh, love, sing, dance, and paint. We go to the beach, give hugs, lots of them, sit quietly, and hold hands. We adventure. Only now, now, we do a lot less of it.

On all our adventures, she was an active participant. I didn’t carry the shell of a person to the shower, dress her, carry her to the car, plop her in a wheelchair just so I could go to the art museum.

We went to the art museum because I asked if she wanted to see the Georgia O’Keeffe’s. And she said yes.. We went to the beach because I asked if she wanted to. And if on any particular day, she wanted to go, but wanted to stay in the car, we did. If she didn’t want to go, we didn’t.

But we lived.

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Shell people don’t laugh. They don’t love. They don’t paint. They don’t sing. They don’t dance. Shell people don’t engage.

She’s not the shell of a person. But her body is dying. And she’s getting ready to leave. That doesn’t mean she’s not still here actively engaging with us.

So what I know is this. We gave her the best we had. She let us know that she had a great life…how do I know this? Because she’d say it. “I have a great life,” or “what a life I have,” or “I’m so blessed.”

Having been with her constantly for the last six years, despite the Doubting Thomas, I am one hundred percent sure that she’s sliding into home base filled with love after living an amazing life, including the last six years.

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Post-script July 3, 2020. Last night, after a really good cognitive day, I flat out asked my mom: “Do you like your life?”
Her response?
“Oh yes! I love it.”
All doubts resolved.

The Home Stretch

For six years we’ve ridden this crazy, upside down, wildly emotional, insane ride. At times, we’ve held on for dear life with the feeling that truly leaving our hands and arms outside the ride at any point would cause us to lose them.

We got tossed and turned and pulled fifty different directions and thrown upside-down and right-side up. Sometimes all in the span of five minutes. 

We lost patience. With each other. With the disease. With my mom early on when the doctor said to push her and she refused to be pushed. 

We found patience. We didn’t always hold on to it. But we did find it. And we’ve tried our best. I hope she knows we were always trying our best.

We climbed to new heights. Higher than we could have dreamed we accelerated to the peaks of love and hope. To the kind of closeness that only comes with fighting a losing battle. We went kicking and screaming into the descents of Alzheimer’s. 

We got our assess handed to us. Over and over….and over again. 

And over and over again, we ended the day with a hug and a kiss. A smile and a “thanks Mom, for a great day.” 

It all went fast. We went fast. 

Too fast. 

When we first began this journey, we knew nothing about how Alzheimer’s ravages the body. Hell, we knew nothing about Alzheimer’s, not really. Not at all. 

When we first started this journey, my mom’s lung disease was well in check.

We lived our best lives. We adventured. We hit the beach and restaurants. We celebrated holidays with renewed vigor and zest. We laughed. Damn, did we laugh. Sometimes so hard we cried. 

We had mother-daughter trips, until we couldn’t. Those trips to Madison were so much fun. She loved the pampering at the spa. We felt like thieves stealing this time away. It was decadent. And she deserved every bit of it. 

Every. Single. Bit. 

Eventually, we half-moved to my apartment after she broke her hip so that we could do therapy three times a week. She called it “vacation.” Every week we went on vacation. My sister got so much credit for these vacations. She always thought we were in Phoenix with her. 

In short, we lived. 

In the face of insurmountable loss, we lived. 

And we loved. 

So hard, we loved. 

I watched my parents’ marriage change into a series of daily small miracles. I watch my dad literally sacrifice himself to take care of her.

You know that a love is real, eternal, battle-tested, and forever when one person literally can’t carry their combined memories. Memories of a lifetime gone…seemingly overnight.

Gone. 

Just gone.

What’s left when all you have is the feeling of how that person makes you feel? What’s left is a lifetime together distilled into one emotion when you see that person in the morning. 

God, the smile she’d give my dad when she saw him for the first time during the day. Actually at any point during the day. I like to think that’s the smile that hooked him 63 years ago. It’s one that lights up a life, lights up a world. 

It has literally been amazing every single day to watch their love in action. I have been an honored guest and witness. 

I know that this kind of love is rare. I know I will never find it. And frankly, I don’t want to try. It’s too much. Too overwhelming. You have to be a really strong person to handle a love like theirs. 

It’s not fair. It was never fair. It was never going to be fair.

*sigh*

When we first started this journey, we couldn’t imagine the end. We couldn’t see it. Or didn’t want to. 

But the end is where we now find ourselves. In the span of a lifetime, the sand in the hourglass is moving at a breakneck speed. 

We’re in the home stretch.

*deep breath*

We knew, my dad and I. 

We knew.

Over the course of the last six weeks, really since the lockdown, things have been sliding in the wrong direction. My mom has been battling lung infection after lung infection since January. Her cognitive function has been swinging wildly from being with us to not knowing me or where she is.

They say that the eyes are the windows to the soul. But you never really believe that until you spend time with someone who has Alzheimer’s Disease. The empty look of complete non-recognition, not even a spark. It’s enough to bring you to your knees over and over again. 

But an hour later, after a good hard sleep, my mom will wake up smiling, a spark of recognition firmly cemented in her eyes. 

Since January, we’ve made trips to the emergency department, urgent care, her primary care physician. Pretty much all of it putting a band-aid on her beautifully destructive lungs. 

But still. I’m not a doctor. I can read the radiology reports. Words like “severe chronic lung disease” mean just that and nothing more. They mean things aren’t good, but they aren’t necessarily bad, either.

But that’s not what they meant at all. 

In reality, what they meant was crap. Her lungs are crap. They look like rocks on x-ray. Their function is dwindling. She won’t recover from many more infections.

In reality, what they meant was shit. Her lungs aren’t efficiently exchanging carbon dioxide for oxygen. In reality, what they meant was that this critical failure of her lungs to do their job will result in her being increasingly more sleepy. 

In reality, what they meant was that this critical failure will cause increased confusion. 

In reality, what they meant was that this critical failure has put her Alzheimer’s progression into over-drive. 

In reality, they meant was a brochure from hospice handed to us by her pulmonologist. 

In reality, what they meant was the beginning of the end of a beautiful life. 

We don’t really know how long. Three months, maybe six. All that depends on her, on her lungs. 

There was never going to be enough time.

Not ever. 

Not for me.

But we’re on the last run of bases now. And we’re ready to give her the last best dash ever. 

She deserves that. She deserves everything we got. 

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Dear Dad…

 

Dad,

I think sometimes we just subconsciously know. I think we know when things are changing. We know when life is going to be up-ended. But our brain is such an amazing organ that it wants to protect us. That it doesn’t want us to see what is right in front of us. 

But. Like all things. Eventually, that which we don’t want to see either makes itself clear, crystally so. Or someone else, someone who isn’t in your pod comes along and gently says, “I think it’s time that you…”

In our case, it was the latter. 

You see, Mom’s doctor’s appointment with Dr. Bloom wasn’t quite okay. 

Dr. Bloom was uncharacteristically quiet and kind. He came in and greeted Mom warmly. He was gentle with her. Sweet, actually. He listened to her lungs. Listened to me give a run down of what’s been going on the last six months. Listened to my concern about her inability to clear this infection she’s been battling since January. 

He excused himself quietly to review the multiple notes from the emergency department, urgent care, and Dr. Poullette and to look at the multitude of xrays she’s had since January. 

He was gone about ten minutes. 

When he returned he was very quiet. Mom was awake, but I don’t know how much she heard or understood. 

The first thing he did was explain that her lungs were bad. They look, he said, like rocks on the xrays. Her disease is now very severe. It won’t get better. She will continue to have re-current infections and anti-biotics will become less and less effective. 

Moreover, he said, she was barely holding her own before the lockdown in her ability to adequately and efficiently exchange her carbon dioxide for oxygen. 

We were, as you know, walking at least a hundred yards three times a week, plus our walks to and from the beach, plus PT. We were doing this every week. But when we locked down, the weather was still crap and I didn’t really know or even understand that she needed to keep moving. I blame myself for this. And it’s on me. Although this would have eventually happened in the coming months anyway since she’s been struggling with these infections. But our lack of movement sped things up. 

So this inability to efficiently exchange her carbon dioxide for oxygen is what is leading her to be consistently more sleepy and confused. It is, he said, advancing her Alzheimer’s. 

It will not get better. And it would have happened in the coming months anyway. We just fast-tracked a little. 

Logically and rationally, we know that she has Alzheimer’s. And we know that the end of this disease is brutal. The person stops speaking and walking. Muscles start to contract and they stop being able to eat. 

I have logically and rationally rationalized myself all weekend. I waited because I wanted us all to celebrate Father’s Day without the heavy thing I’m about to say hanging over you…over us. I looked at years and years worth of pictures, but mostly centered on the last six years to settle my heart. 

We have done our best work together. Mom has been safe and happy. She is loved. So very much loved. I don’t know how she could be more loved. 

You have sacrificed yourself literally and figuratively to keep her safe and loved. You have been an amazing man, husband and hero. 

But. 

We are now in the home stretch. The stretch where we help her to get home. The part where we start to let her go while keeping her close and safe while still adventuring and loving and sliding into home base knowing we did all we could, together, to make the most of the time we have left. 

And, in the span of a lifetime, that time is relatively short. Three months give or take three months. Maybe six. He wasn’t really sure, but he left saying that we were doing a wonderful job and to please make a follow-up appointment for three months, “if we are able.” He did not want to leave us with a firm end time at this point. But he knows that we are in the home stretch.

We talked about how at this point not making Mom a Do Not Resuscitate and a Do Not Intubate would be cruel. She would not recover and it would needlessly prolong her suffering were she to come to a point where she needed intubation or resuscitation. I believe that where we are at this exact moment in time, he is absolutely correct. 

What we wanted a year ago when he brought this up with us was time. Precious, beautiful, peaceful, adventure-filled time. And I hope that you agree, God gave us that time. 

But now it’s time to heartbreakingly acknowledge that we are nearing the end of this journey. I am destroyed. I will always want more time. I want more of this weirdly chaotic life we’ve led the last six years. I will never be ready for this. 

But. 

It’s not about me. Or you. So much of this journey has been about putting what we want second to her needs. And it’s time to do that one more time. One last time. 

Dr. Bloom said that Mom’s beautifully destructive lungs will continue to fail to exchange carbon dioxide. She will sleep more. She will lose us. But he said that he thought this would be peaceful. That she would not suffer. 

He said that his goal for us was to have her die at home. Surrounded by her dearest and greatest love and the rest of us. 

But he said, in order to do that, we need help. We need hospice care. 

I am sorry to do this in a letter. More than you know. But I know that if I’d tried to talk to you, I don’t know that I’d have gotten all of this out. 

Moreover, I don’t know if you will want to be alone after you know or if you will want to talk. Or hug. Or cry together. This is so very personal and different for everyone. So I wanted you to have the choice, in the world we live in, we don’t have many. So I’m giving you the choice.

But I am here. When you are ready. I am here.

We will walk these last run of bases together. We will make these next few months as beautiful and love-filled as we possibly can. We will adventure and laugh and love and hug and be us. And at the end, we will know that we gave her the best we had. 

I love you so much, Dad. 

Love you,

me

Spiraling in Darkness

Being a family caregiver is a loss.

Every single day, without end, you are losing. Losing the battle against the Alzheimer’s dragon. Losing your loved one. Losing yourself. Losing your freedom. Losing sleep. Losing stamina. Losing opportunities. Losing your friends. Losing your time. Losing your mind.

If you’re not careful, you’ll spiral. And that’s what I’ve been doing the last couple of weeks. Spiraling.

Looking at my life, waking up and thinking, “Is this it?” For as far forward as I can see, this is it? This is all, really?

A couple weeks ago, I talked to someone I hadn’t spoken to in awhile. We’re friends on Facebook. She follows along on my posts about my mom.

She said something every family caregiver has heard some variation of, “I don’t know how you do it. It’s incredible. You’re an inspiration.”

It’s not that this is unwelcome. And I can’t speak for every family caregiver, but I get a little pit in my stomach when someone says something like that. It’s uncomfortable. Honestly, I don’t really like to talk about it because it’s depressing…for them, but mostly for me. So I’ll change the subject, sometimes really awkwardly.

But here’s why…

Being a family caregiver is guilt.

Caregiver guilt is a known issue. We feel guilty about all kinds of shit. Are we enough? Did we do this right? Are we making the right decisions for our Lovie? Is our Lovie better off with someone who isn’t us? (We feel guilty for thinking it and guilty for thinking we are enough because maybe we’re not and then we feel guilty because maybe we really aren’t enough.).

But lately, what I feel guilt about the most is this: the feeling that what I’m doing isn’t enough to sustain me. She’s my mom for Christ’s sake. She should be enough.

Caregivers are swept up in this never-ending cycle of sameness, of mundaneness. The sleepless nights. The never quite recovering and never quite feeling like a normal human being are endless.

Feeling like you’re always failing.

Always exhausted.

Always behind the “8” ball.

Always socially out of step.

Over and over again.

Day in and day out.

Stuck.

My psychologist and I talk often about how to try to survive in an environment that, at every turn, is ready to break you.

The simple fact is, though, it’s already broken me.

I am broken.

When I think about what’s in store, the future, the monotony of our day to day life, I want to scream. But I usually just wind up crying, lately, sobbing. I feel chained and boxed in and blessed and cursed.

We started our discussion by going back to core values.

The top of mine, for me as it relates strictly to me, is learning. I shrivel when I’m not actively seeking knowledge. Our sleepless nights have made that drive and desire to seek out even the smallest pieces of new information dry up. I’m too tired to care.

When I first started helping my mom, she was in the early, early stages. We were still in book club. We still made regular, hours long trips to Barnes & Noble. We were learning together. Always together. She was still cutting out newspaper articles for me.

I was looking at her bookshelves the other day and came across the last book we read for book club, “The Short and Tragic Life of Robert Peace: A Brilliant Young Man Who Left Newark for the Ivy League” by Jeff Hobbs. I spent hours meticulously documenting all the characters for her and diagramming the timeline of his life.

When we got to book club and the discussion started, she was lost. We lasted a half hour and she said we needed to go. It was our last book club. That was three years ago.

That hurt.

Not losing book club per se, but losing that part of her. That part of us. She’d been a founding member of that book club. I was there with her at the first meeting.

After that, though, I started reading out loud to her. Biographies of people she knew. We ripped through all of Karen Karbo’s books. Because they were easy to follow and funny. We were still learning just in a different way.

When she was hospitalized in September and then broke her hip, it really marked a decline. Even simple biographies were too much for her. Because children’s stories are beneath her still (why are we reading this??) and chapter books are beyond her (what’s going on??), we stopped altogether.

And when she broke her hip, I had to stop hitting concerts for OnMilwaukee. There wasn’t time. I was too exhausted. I couldn’t think fast enough to write on a deadline.

So we started “just being.” I tried to take comfort in the fact that she’s still here and that’s she’s still guiding me through life in her own unique way. I tried to be okay with being still and being present and holding hands and not talking.

But it’s felt like eleven long months of withering, of being restless for something, but not having the energy to figure it out and execute. And it’s broken me.

My psychologist’s solution is to try to find small things even if it’s just one newspaper article a day. To at least feel like I did something cerebral during the day.

But when I do try, my mom likes to take my device, book, paper, magazine out of my hands and read (or pretend to) herself. Taking it back makes her grumpy and she’ll only wind up doing it again. It’s a cycle. An annoying one.

That’s making it really difficult to feel like me. And the spiral starts all over again I think about how much I don’t want to do this anymore and how I can’t dream of doing anything else.

I’m in a dark place. I admit it freely.

I hate where I am. I don’t want to be here.

And sometimes acknowledging that you’re filled with darkness, and anxiety, and are sad is the only thing you can do to stay sane.

When Your Job Becomes Simply To Love

It’s June 21st, the longest day. And Alzheimer’s Association’s #TheLongestDay. I just got a text from my dad that my mom is refusing some of her treatments this morning.

It’s been a week like that. A week where my vision cleared, my heart broke, and then shattered. It pulled itself back together and shattered again.

On Tuesday, my lady and I went for a walk. Something she normally enjoys.

She’s normally talking about the weather, and the flowers, and the trees, and the people, the stones and the cracks in the sidewalk. She makes funny little noises when the wind blows unexpectedly on her face or we go around big cracks in the sidewalk and she squeals with delight when she sees something unusual.

Yesterday, she was silent. You could just feel the blah-ness coming off of her. We’d been out for just a short time when I asked which way she wanted to go.

“Back,” she said.

“Okay,” I replied.

If you know me, you know that we often walk down by the lake. And you know that to get there we have to go downhill. Which means going back is all uphill.

We used the ramps by Lake Bluff and her silence turned into agitation on a dime. At every turn she got more upset, “You don’t have to go this way.”

And, “It’s too far up, don’t go this way.”

Then, “Stop, turn around, you’re going to be tired.”

I tried to reassure her that I was fine. I tried to explain that the only way to get back to our apartment was to go uphill. But she wanted none of it. She just kept squirming and telling me to turn around until we got to the top and I could promise her it was all downhill from there.

But it hit me, that five or so minutes it took to get to the top, her agitation wasn’t about anything other than her feeling like a burden.

We’re fighting an uphill battle against Alzheimer’s.

We always knew that. But it’s not been more apparent than these last three weeks.

Pneumonia.

A hospital stay.

Critically low oxygen levels.

Three Emergency Department visits.

Refusal to take medications.

Refusal to do breathing treatments.

Refusal to eat.

The sad far away look in her eyes when she’s being changed, getting helped into the car, or being helped to shower and dress.

The questions: What’s the point of this? Is this going to fix me? Will this change anything?

Uphill.

We’re going uphill on a muddy mountain, on a continuously stormy day, pushing a boulder that grows exponentially larger every. single. day.

It feels like she’s giving up.

And the question is, really, at this point isn’t how to turn this around for her… because at the beginning of all this and throughout this dark journey through this wretched disease, she’s expressed how much she doesn’t want to be like this…

She’s now in chronic respiratory failure with increased oxygen needs. A new machine which hits 8 liters was delivered yesterday. Her uphill battle is more like scaling a mountain with one pickaxe and a hand tied behind your back.

To be brutally honest, turning this around for her only means more pain and struggle for her while we gain what? More days or weeks, even months or a year, with her hating what she’s become? More days with her looking out onto the world hoping that when she shuts her eyes this time, they don’t open again? Who would want that for anyone?

The question is really how to make her as comfortable as possible, how to fill her days with small joys, little smiles, touch, love, hopefully some laughter, and peace while trying to keep her safe and pain free. While making sure she knows she’s not a burden. That’s she’s so loved. So very much loved.

The only answer I’ve come up with so far is to just be. Be in every moment with her. To stop being the caregiver as much as possible and to just be her friend. To hold her and hug her and love her as much as possible.

Our job more than anything else now is to love her.

And we will.

Forever we will.

Couch time