Long Term Care

rccm-alzheimers1

The Hardest Part of Alzheimer’s…

Was Telling My Mom She Had It

An Afternoon at the Museum

Everyone who has lived in New York has a memory about the American Museum of Natural History, so here is mine. I’m standing on the upper deck of the Milstein Hall of Ocean Life, and my mom is yelling at me.

She’s pissed because I told her doctor I thought she had Alzheimer’s. I’m sad because you didn’t need a doctor to know she did.

I was of course the only person in the museum who knew this. All anyone else could see was the weirdness of a gray-haired lady yelling at her 30-something kid. It was a Sunday afternoon and the museum was packed with younger parents with younger kids who walked wider and wider of us until there was a force field around our scene. It was impossible to look her in the eyes so I absorbed her wrath gazing at the fiberglass blue whale that hangs from the museum’s ceiling.

This is obviously not my favorite memory, but I am a little proud of it. I’m proud because that was the first day, after 30-some years of being the baby of the family — of always getting more attention and freedom and Christmas presents — that I felt like I had stepped up. My dad and sister knew about mom’s Alzheimer’s long before I ever did, but I was the one who told the doctor. And now I was taking one for the team.

My sister is seven years older than me, so I am 100% the baby of the family. I know seven years isn’t the biggest gap you’ve ever heard of and that there are families with like a smoking hot stepmom and siblings that are 30 years apart and uncles who are younger than their nephews, but when I was growing up it seemed pretty extreme.

My sister and I have never been contemporaries and she has fully formed memories of my first words and steps. Whenever people ask me if I have siblings and I say Yeah I have an older sister, seven years, they’re always like Oh, so, quite a bit older.

Being the baby has its advantages, and I like them. But the weird thing is you are always a step behind. You are the last one to leave the kids’ table and the last to get jokes at the adult one.

The first time I saw snow was on a trip from San Francisco to Tahoe: When we eclipsed some elevation and white stuff appeared on the roadside, I asked my sister if that was snow, and she said That’s snow!, because unlike me she had seen snow before. When my family drove cross-country my sister helped with the driving, because by then she had a driver’s license. When I finally got mine the reward was for me to become the family’s designated driver.

And that’s just the stuff I was actually there for. My sister remembers my parents smoking weed in the 70s. There was no pot in the house I grew up in. My parents took my sister camping in Yosemite. Camping I learned on my own.

Yosemite
I should probably clarify “learned.” I’m not really a camping person. Like I’ll go camping if there is some big movement to go camping, but I’m not leading the charge.

Here was how my first trip to Yosemite went down. I was a senior in high school and was hanging out with some buddies at a skateboard shop. As we deliberated our plans to find beer an older skate friend named Wayne walked in. He told the shop’s owner, Victor, that he was thinking about driving to Yosemite and hiking to Half Dome under a full moon.

This sounded a little ambitious. Yosemite was a four-hour drive. But Victor wanted to go with Wayne, everyone wanted to go with Victor, and I wanted to go with everyone. So I told my parents I was staying at someone’s house, and hopped in Wayne’s truck.

Half Dome is a legitimate hike. It is about 7 miles each way with heavy elevation gains and at the end you climb the rock while clinging to wire ropes. Most of us did not know this, and so were woefully undersupplied. I brought a water bottle and hiked in skateboard shoes. My friend Aaron lugged a backpack with a 12-pack of Pepsi. Have you ever been out hiking and come upon a family that’s like in Crocs and pushing a stroller and thought Jesus, how did these people get way out here? We were those people.

On top of that we were drunk. On the drive to Yosemite we had decided that the only thing smarter than starting a hike at Midnight with no sleep or preparation would be to do so after a 40 of Mickey’s.

Wayne was the only reason we made it. He guided us along the trail and had a flashlight and some snacks. When we inevitably ran out of water he tightrope walked across a fallen tree to a stream and replenished our bottles with some pump thing that filters stream water into drinking water. I was like, man, this guy is serious.

 

 

We climbed the ropes under mid-morning sun and absorbed the view up top. We napped long enough to get asymmetric sunburns but not long enough to be enthused about the hike back. Still we persevered, and the bottom we were rewarded with a kind stranger who had weirdly big calves and offered to buy us hamburgers at a crowded food stand, which we happily took him up on before getting the fuck back to the car.

A few days later I told my dad about the trip. I just kind of dropped it on him, like, Yeah a few days ago I went to Yosemite and told him about everything minus the 40s. Dad absorbed the story and did some silent remembering and asked why I had lied about staying at someone’s house. I lied again and said we came up with the plan after that. It seemed easier to lie about the lie and just move on rather than have some big mea culpa.

He said it was OK. He said he felt bad we had never “done Yosemite” and how he and my mom used to go camping with my sister. He said he felt bad about that and was happy I went on my own.

Calling the Doctor
Given that I was the last person in my family to go to Yosemite and that I’m generally the last to know or experience everything, it makes sense that I was the last one to acknowledge it when mom started losing her memory. I can go back in time and come up with all sorts of scary anecdotes like how shortly after she retired and I had moved to New York we went on a walk near the New York Stock Exchange and mom kept telling me how the thing about being retired is that it’s hard to remember what day it is, and how it wasn’t the story itself that bothered me but the fact that she told it maybe 600 times.

But honestly, I had no clue. Like most mid-20s people, I was just sort of out in the world doing my thing and wasn’t thinking too hard about how my parents were aging.

The first sign of concern came from my sister, and I can’t remember it exactly, but it was something about mom misidentifying a banana. That seemed weak. I do stuff like that all the time! But my sister was helping her husband’s family deal with his own mother’s Alzheimer’s, so she had some unfortunate experience with the matter. Just as an aside, now that I’ve dealt with this thing myself I live in dread of the day when I notice it in someone else’s parent before they do.

Whatever I thought about the banana incident, there would soon be lots of others to draw from. One time during a visit to San Francisco my mom told me she wanted to read a good book. I recommended “Never Let Me Go” and she bought three copies but never read any of them. Later she opened a Facebook account. Then she lost her memory of opening said account, and at one point told me how neat it was that Facebook knew her birthday and where went she went to college and had pictures of her.

When finally I got the courage to Google the word Alzheimer’s, it felt like I was giving her the disease, not researching it. I read Alzheimer’s has no cure. I read the drugs that slow it are not very good.

There was a brief moment of hope when I read that memory loss is also a symptom of depression. I raced through all the plausible reasons for why my mother might be depressed — Maybe she hates being in retirement! Maybe she’s lost her sense of purpose! — and Googled endless variations of “memory” and “depression.” I called my sister and said Hey maybe it’s depression and she said she had Googled the same things and wouldn’t it be great if mom was just depressed?

But before we could figure any of this out my mom had to go to a doctor — and she was having none of that. My dad asked her to get some memory tests and she refused. He sweetened the deal by offering to do them with her. No dice.

I performed one final test before a trip home. Instead of telling my dad, I planned the entire trip with my mom. She was writing it in her calendar, she said. She would get my dad to pick me up, she promised.

And then a day or two before I left New York, when I finally called my dad and told him I would be coming, he was alarmed and pleasantly surprised. And I was like, oh, man. Oh man, no. No. No. No. I got that dreadful feeling where your skin gets all heavy and that night in bed I cried real quiet like so that the girlfriend who is now my wife wouldn’t hear me.

My wife and I worked together back then, but we usually didn’t ride the subway together. That would be too much. But that morning I made sure we did, because I knew I was going to lose it.

I kept my cool for the ride to Manhattan. Too cool, in fact: When we got to our stop my wife said What’s wrong (I talk a lot but that morning was quiet so my wife knew something was off)? I said something about how I was talking to my mom last night and the waterworks commenced. I covered my eyes with one elbow and my wife grabbed me by the other to guide me through a crowded subway station and up the stairs in blindness.

I’m a big time hypochondriac. One time I went on a hike with a big, ill-fitting backpack and the next day had a pain in my armpits and called my friend, a doctor, to ask if there was such a thing as armpit cancer. So as I sat there crying in Rockefeller Center I expected my wife to give me the usual stuff about how I’m nuts and my mom was fine.

But my wife just nodded as I told her about all the things I had noticed and how she completely forgot my trip to California and how this wasn’t like a small slip-up — we had been planning it for weeks. My wife said she had some suspicions of her own. I cried some more and then chilled out and called my boss to tell her I was running an hour late so that I could sit out the redness.

A few days later, finally in San Francisco, I asked my mom to meet me for coffee downtown. We met at a Starbucks on California Street and sat at an outside table and were periodically interrupted by passing cable cars packed with tourists and cameras.

This was step one of my plan to coerce her into going to the doctor. My sister couldn’t do it because she had young kids and was dealing with sick in-laws. My dad couldn’t do it because mom didn’t want to go and he had to live with her. Somebody had to get whatever this was started.

We talked normal for a bit. Mom made a joke about how she was trying to figure out what she wanted to do when she grew up. I remember that part well because a few days later my friend’s mom told me the same thing — Is this just a thing old people say? — and it stung me because when that lady said it it seemed funny and hopeful. But when mom said it at Starbucks I thought, Yeah, well, I’m sorry, but there is not going to be a whole lot of growing up in your future. That was a horrible thing to think but it was impossible not to.

“Sometimes I forget things,” my mom told me later.

I remember that part perfectly because I was like, OK, here’s my chance. I asked her if she was worried about it. She said not really. It’s aging and everybody forgets things. She said I hope you don’t think your dad doesn’t forget things. She said sometimes my dad would get on her for forgetting something but then she would remember some distant story or fact and my dad would say how did you remember that?

I asked if she would be open to going to a doctor about it. You know, just to be safe. She said she had a doctor and that doctor had never told her she needed to have her memory tested. She said I hope you don’t think your dad doesn’t forget things. I asked her if she would get tested if that doctor asked her to? She said of course.

I asked what her doctor’s name was. She told me. Then she told me that the funniest thing is sometimes my dad would get on her for forgetting something but then she would remember some distant story or fact and my dad would say how did you remember that?

I Googled her doctor and then emailed her and called her and when she called back I said Hey, uhh, I know that this has to be a one-way conversation but I’m worried my mom has Alzheimer’s. The doctor noted that memory loss is also a sign depression — Somebody should write a dark musical comedy about Alzheimer’s called “Maybe She’s Just Depressed?” — and I said, yeah, sure, whatever, can you just ask her to take some tests, and, uhh, if you can, please, please, please don’t tell her I was the one who called you?

About a week later my mom came home and was alarmed to find that the brass mailbox at their San Francisco Victorian was stuffed with a big packet that was full of questionnaires and glossy brochures filled with the A word. She called the doctor to ask what this was all about and the doctor said your son called me because he is worried about your memory. I guess the second part of my request didn’t work out.

Soon after my mom had my dad send me an angry email on her behalf — or, rather, he sent an email that said she wasn’t angry, which actually meant she was; oh and by the way, if everything’s fine, why is dad sending your emails? But that email was just a warmup. We were destined for an in-person blowout at some point, and the Museum of Natural History turned out to be the venue.

Straight from the stranger than fiction department, when we walked into the museum that Sunday we were met by big signs announcing a special exhibit on the brain. It cost extra and I walked by it like LaLaLaLa nothing to see here, but my dad, who can out-cringe anyone, walks up and buys tickets. I’m standing there with my mom looking at him like Hey man, ixnay on the ainbray but he just plowed ahead.

My dad is of the opinion that you should know what you’re getting into, and I get that. But I was already dreading that day. We treated the brain exhibit the way polite company treats a fart. Just walked through the darkened hallway admiring the tangles of wires and flashing lights and pretending it was all so distant and sciencey.

After that we went to the ocean hall. My dad left me and mom so that he could go to the gift shop and take one of his many pisses. And like two bullies in the absence of a teacher, mom and I commenced our fight. She might have been losing her memory but had forgotten exactly nothing about my betrayal.

Why did you do that? she said. She was clenched and intense the way people are when they are pissed off in public. I said because I thought something was wrong. She said but this was about me. You should tell, me! she said louder.

I got hushed, like, let’s lower our voice in this place, and I told her I did it because I was worried about her and love her. That was true but mom took it like the aging parent equivalent of “it’s not you it’s me.”

This memory really sucks. But sometimes it can be really nice. Nice because now that my mom can barely talk and has a hard time distinguishing a coffee cup from a box of Kleenex, it’s weirdly comforting to remember her yelling at me. That was the last time she asserted herself as my mother, and that’s an important moment. And the horribleness of the memory is what makes it so easy to remember.

She also agreed to go the doctor. Not happily, but she did it. She said something like I’ll go but just know that you’re the only one who thinks I have any problems. And I said thank you and pretended like it was a one-man job instead of a vast conspiracy. Still the family baby but a little less than before.

Yosemite Photo: Steve Dunleavy

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