Slipping Away
September 6, 2015 8:51 PM   Subscribe

Jo Aubin has Alzheimer's. He's 38. He had a hard time naming the building they were in, and he couldn’t recall one of the three words immediately after he heard them. But his pentagon diagram was flawless and, again, rendered in fine, artistic pen-strokes. For a sentence, Jo wrote, “I am myself always and not at all.” It reads as achingly evocative, but it’s possible there was something else going on. “Is this really deep, or is he starting to lose his thoughts?” Borrie wondered. This time, Jo scored 20 out of 30.
posted by un petit cadeau (29 comments total) 35 users marked this as a favorite
 
I read this lady night. My Twitter feed has been full of people linking to it. Just heartbreaking.
posted by ThatCanadianGirl at 9:25 PM on September 6, 2015


That ending, right in the feels.
posted by furtive at 9:34 PM on September 6, 2015 [7 favorites]


Oh my goodness. Very powerful. Indeed that ending is just heartbreaking.
posted by Joey Michaels at 10:49 PM on September 6, 2015


Oh god. Worst nightmare. This poor, poor family.
posted by town of cats at 10:54 PM on September 6, 2015


A close friend has promised me that if this ever happens to me, I won't see the pillow coming. Pratchett was right.
posted by feckless fecal fear mongering at 11:03 PM on September 6, 2015 [8 favorites]


“We will surround them,” says Karen Johnson, the program’s director. “We will surround this family.”

Whatever those people are being paid, it's not enough.
posted by feckless fecal fear mongering at 11:18 PM on September 6, 2015 [11 favorites]


I held it together, reading the article, until all the pictures of things that are special to him. Jesus Christ, what a thing. There's no way to be philosophical about Alzheimer's; it's just the cruellest thing to know your own self is slipping away, and for your loved ones to lose you while you're still alive. At 38 it is beyond comprehension.
posted by hurdy gurdy girl at 11:50 PM on September 6, 2015 [2 favorites]


Fantastic journalism. Dreadful story. And while I know Jo knows what's ahead of him, I wonder if his wife really does. Or if she needs to.
posted by DarlingBri at 1:17 AM on September 7, 2015


Nothing terrifies me more than Alzheimer's. You can't even wait to terminate, because you risk losing the ability to do it properly. To put another way, you risk forgetting that you resolved never to slowly succumb to that illness.
posted by Beholder at 2:50 AM on September 7, 2015 [6 favorites]


Nothing terrifies me more than Alzheimer's.

Quoted, for truth.
So much truth.

I've known of people who have done through early onset (in their 50s), I know the daughter, and every memory lapse just gets tallied because you are so worried...
posted by Mezentian at 4:24 AM on September 7, 2015 [1 favorite]


Heartbreaking. From the moment I saw "I am Mine" (my favourite Pearl Jam song) I wanted to say something and there it was, at the end. He's still him but he gets to watch himself diminish in fast forward. Bloody terrifying.
posted by h00py at 5:13 AM on September 7, 2015 [3 favorites]


~Nothing terrifies me more than Alzheimer's.

Getting old, in general, scares the hell out of me, but Alzheimer's is the biggest terror of them all. I'm watching my mother disappear and it's so damned frightening.

~You can't even wait to terminate, because you risk losing the ability to do it properly. To put another way, you risk forgetting that you resolved never to slowly succumb to that illness.

I've wrestled with that one, myself. I'm not a gun person, but I've long thought I should get one, just in case I start going down that same path as my mother. But, yeah, the possibility of forgetting what your end plan was is highly probable.
posted by Thorzdad at 6:25 AM on September 7, 2015 [3 favorites]


There have been a lot of young people dying/getting debilitated stories on the Blue lately.

Or maybe I'm getting older and my threshold for young is adjusting accordingly.
posted by dismas at 6:35 AM on September 7, 2015 [5 favorites]


I was thinking about how much I am not looking forward to going back to work tomorrow and then I read this beautifully reported piece .. an important reminder that these are the good old days.
posted by Kangaroo at 7:08 AM on September 7, 2015 [8 favorites]


I work in a long term care facility and see lots of older people with Alzheimer's or other types of dementia. By the time someone gets to us they're usually past the point where their family can take care of them, so I don't get to see the person they used to be, or how their loved ones have been able to process the gradual loss of that individual. I deeply appreciate this article for giving me a glimpse of the years before someone needs long term care and the toll it takes on them and their family, but God, I can't imagine dealing with this at 38. Working with the elderly is challenging in a lot of ways, but usually you can at least somewhat comfort yourself with the fact that they have had a long life and that this is part of a natural decline - no one lives forever. 38, however, is way too young.
posted by odayoday at 7:19 AM on September 7, 2015 [7 favorites]


Oh, God. This is so very close to home, I can't even tell you, although the particular monster in my life isn't Alzheimer's. This was extraordinarily painful to read, but also made me feel a tiny it less alone. Thank you for sharing it.
posted by Stacey at 7:22 AM on September 7, 2015 [6 favorites]


After his diagnosis, Jo would tell his doctor he could remember moments in his mid-20s when he would feel momentarily disoriented while walking somewhere.

This is what scares the crap out of me - I've had a few of these momentary disorientations and while the early-onset form does not run in my family, the regular kind does to some degree. It's really an awful disease.
posted by St. Peepsburg at 7:44 AM on September 7, 2015 [2 favorites]


I watched dementia utterly change the woman my mother was, but she was an elderly person who'd had a full life. This article is so indescribably sad. Peace and courage to Jo and Robin.
posted by Sassenach at 11:12 AM on September 7, 2015 [2 favorites]


In the onset of my mother's illness, this video's animated explanation of how a person suffering from dementia perceives the world, and the loss, confusion, and frustration they experience offered me a window into my mom's perspective and helped me learn how to care for and comfort her. Dementia is heartbreaking.
posted by Queen of Spreadable Fats at 11:33 AM on September 7, 2015 [13 favorites]


I've had a rough spell recently with many people I care about dying or getting terminal diagnoses. After seeing dementia, cancer, accidental death, overdose, suicide, getting too old, euthanasia and other ways of dying...well they all suck. At least with dementia you and your loved ones usually get some time. Also during the end stage your mind is gone, so the often traumatic parts of the messy final medical interventions are not something you experience. And generally those interventions are not taken or offered. Other terminal illnesses like cancer may force you to endure right up to the end. Do you want that final surgery or round of chemo? Will doctors ignore your DNR and force you to live a few more days but now with broken ribs?
Dementia doesn't scare me like it once did.
posted by humanfont at 6:05 PM on September 7, 2015


the often traumatic parts of the messy final medical interventions are not something you experience

Not always the case, I regret to say...
posted by datawrangler at 6:37 PM on September 7, 2015


I've wrestled with that one, myself. I'm not a gun person, but I've long thought I should get one, just in case I start going down that same path as my mother. But, yeah, the possibility of forgetting what your end plan was is highly probable.

And America's position on assisted suicide is the same as our position on the poor, you're on your own.
posted by Beholder at 8:24 PM on September 7, 2015 [2 favorites]


At least with dementia you and your loved ones usually get some time

some time to do what exactly?

watch someone you love turn into a toddler again?

How is that a blessing to anyone?

when my mind (such as it is ) goes, take me out back like Old Yeller and fucking end it, I am begging you
posted by feckless fecal fear mongering at 10:11 PM on September 7, 2015 [5 favorites]


Would you prefer your loved one pass suddenly and with no pain? They might slip in the kitchen while doing dishes, crack their skull on the granite counter, have the broken stem of the wineglass they were cleaning stab them through the heart. They felt no pain, it was quick. The kids found the body as they got home from school. Perhaps the diagnosis of dementia and a few months of partial lucidity to say goodbye before the brian fogs permanently isn't so bad. Don't mistake my meaning, it still sucks.
posted by humanfont at 4:06 AM on September 8, 2015


Would you prefer your loved one pass suddenly and with no pain?

...yes?
posted by Blue Jello Elf at 6:57 AM on September 8, 2015 [2 favorites]


Yeah, me too. I'm glad my Dad was here to get to know my sons but fuck, 18 years of waiting to die has been really bloody awful for him. I know what he would have preferred.
posted by h00py at 7:29 AM on September 8, 2015


Would you prefer your loved one pass suddenly and with no pain?

Abofuckinglutely yes.
posted by feckless fecal fear mongering at 8:21 AM on September 8, 2015


when my mind (such as it is ) goes, take me out back like Old Yeller and fucking end it, I am begging you

Holy shit, yes. My father slipped into dementia in his early sixties. I'm not all that far from that age myself.
posted by blucevalo at 10:34 AM on September 8, 2015


Wow, that ending gave me literal chills. I knew "I Am Mine" was the title of a Pearl Jam song, but I'd forgotten how eerily appropriate the lyrics are.
posted by diogenes at 10:38 AM on September 8, 2015


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