"Hope is the enemy."
October 10, 2015 9:08 AM   Subscribe

"Caring for a patient suffering from dementia means coming to terms with the frustrating paradoxes of memory and language." A thoughtful, philosophical first-person essay.
...for those stricken by dementia, repetition is not merely a symptom but also a refuge, a coping mechanism that attempts to counter memory loss. Such loss, after all, is frightening, and people with dementia vainly attempt to impose order on their surroundings. What mattered to Mr. Schecter was not my answers to his questions, but the act of communication, of following a familiar social script, of engaging in normal behavior. That was what kept the chaos at bay. And because it was my job to ground him, I became a co-conspirator in normalcy, or at least the pretense of normalcy. I wasn’t just an ear that Mr. Schecter could talk into; I was a presence that reassured him of his own existence.
posted by Charity Garfein (16 comments total) 43 users marked this as a favorite
His father had traveled someplace where Sam could not follow

The first time you realize this about a person is a crushing injury. And because we do for others what we will not do for ourselves, we go on.

It's a hard essay to read if you've lived with any relationship to a person with dementia. Dasha captures the sense of understanding in stages, unfolding the dulled observations to discover the new and latest truths.

If nothing else, the essay is a reminder (or perhaps a wake-up call) that caregivers are growing in number, in some cases both untrained and unprepared for the tasks to be embraced, and require another kind of compassion and caring from those around them.
posted by datawrangler at 9:59 AM on October 10, 2015 [6 favorites]

That was beautiful. It's good to see that, even though Oliver Sacks is gone, there are other writers carrying on his tradition of writing compassionately about the brain and what it means to be human.
posted by matildaben at 10:03 AM on October 10, 2015 [3 favorites]

This essay helped me so much today. My 98 year old grandmother is in an assisted living facility, thankfully very near my folks. My father, her son, visits her at least every other day, and is able to connect with her as her mind and memory deteriorates from dementia. My wife and I visit every month or so, and she is happy to see us and memories and conversation spark, but quickly derail into repetitive loops.

It was my father's birthday this week, and he and my mom were out of town on vacation. I took off work to go have lunch with her and visit. Her small world that she seems stuck in, is hard to sit with for too long. I just smile and give her the love and kindness she gave me throughout life. I hang on to the good memories I have her, and try to repeat them as thoroughly as I can when I'm with her.
posted by mctsonic at 10:09 AM on October 10, 2015 [12 favorites]

My mother is in the early stages of Alzheimer's. This really hit close to home.
posted by immlass at 10:29 AM on October 10, 2015 [2 favorites]

I read it. I've not had to deal with anything this severe, so I'll just offer internet hugs to those of you who are/will, and post a link to janey47's "Stop using words", which may be of some help or some solace.
posted by benito.strauss at 10:54 AM on October 10, 2015 [2 favorites]

Also, interesting connection to Godot.
posted by Omnomnom at 10:54 AM on October 10, 2015

I've not been in this situation with dementia, but the repetition for people with schizophrenia is similar in many ways with it's unrelentingness (I got six phone calls yesterday from one of my clients, all of them functionally the same) and different in its bizarreness which ceases to become bizarre at around the three month mark. The main difference I can see is the ability to learn; it's an amazing thing to hear the words you've repeated over and over to calm, to reassure, to redirect coming out of the mouth of another person. It makes me try to be more mindful of what I say.

Part of the weirdness of how the US, at least, treats mental illness is the isolation of both client and caregiver; illness of this sort is not treated as something that all of us will experience and that all of us should pitch in on, accept as part of being human, try to show compassion - but rather as something which should be done behind doors, quietly, and without disturbing the people around us. Frankly, I think this isolation is untenable, but I also thing it exacerbates the problems by narrowing down peoples' worlds until they are a postage stamp traced over and over again.

We are, after all, what we practice.
posted by Deoridhe at 11:29 AM on October 10, 2015 [4 favorites]

That all really took me back to when my mother was sliding deeper and deeper into sever dementia. So many very, very familiar thoughts and feelings. I've dealt with each and every thing (and much more) and it really, truly is maddening, frustrating, and oh so wearying. The caregiver often suffers far more than the patient.

What I don't understand, though, is why they didn't move Mr. Shechter to a memory-care residence. Not just for Shechter's health and safety, but also for the caregiver's safety (especially given that the "caregiver" has no training in dementia care). If you're at the point where the sufferer is bursting into your bedroom in the middle of the night, you're also at the point where the sufferer is apt to light a fire in the (non existent) fireplace, or simply wander out of the home in the middle of the night and disappear.
posted by Thorzdad at 11:31 AM on October 10, 2015 [5 favorites]

"And, how old are you now?"
"I am sixty four."
"And that means, I am?"
"Eighty four."
"That's right, I am eighty four."
"And how are the girls?"
"They are good, X is doing such and such, and Y is in New York, working."
'And how old are they now?"
"X is thirty three, and Y is twenty seven."
"Oh my, and how old am I?"
"I haven't had a bite to eat all day, no one even speaks to you here. And how old are you now? I see, and that makes me?"
"Eighty four, you are eighty four."
"This place is like a prison, no one ever talks to you."
"Oh Mom, I love you."
"I love you too honey, I am lucky to have you."
"Me too Mom, I am lucky to have you."
posted by Oyéah at 11:46 AM on October 10, 2015 [11 favorites]

I count myself very lucky that I've got this far in life without being affected by dementia - not so much in myself, as I'm still middle-aged, but as I have a good selection of friends and relatives who are moving firmly along the probability graph.

But I'm probably more aware of it, and all the manifold unfairnesses and miseries it brings to the sufferer and - so often - more so those around them, than i would have been before the Internet. This is, in a way, a blessing, mild enough but real, in that If and when it visits, I will be in some way prepared. Not that there's much to be prepared about, but at least one can know something of what's ahead. There have always been books and to some extent coverage in the media, but it's not something that real people talk about to strangers. Online, real people do.

I hope, because that's how I'm wired, that there will be soon some better ways to cope with it, even perhaps to stall its progress or better. I'd like to think that some of the efforts to provide ways to stimulate dementia sufferers to relive those memories and activate those faculties which remain will prove effective. We are getting very good at manipulating images and creating interactive environments. This is the sort of thing I'm thinking of, although I've encountered many others.

So, perhaps hope isn't always the enemy. There may not be much, but there may be something.
posted by Devonian at 12:37 PM on October 10, 2015 [1 favorite]

...symptoms often recapitulate a laundry list of aggravating behaviors that have always marked a familial relationship. In this respect, the disease becomes a repeat performance of what has been played out many times before.


Thank you for the link. The article is very helpful.
posted by jaruwaan at 1:14 PM on October 10, 2015 [2 favorites]

The truth isn't pretty, but denying it only makes it worse.

Alzheimer's kills people while they're still walking around. It does it slowly, taking away little pieces of what makes them human until eventually it's undeniable that they're gone and you don't even know exactly when it happened.

On an individual basis, hope is denial, and if you let yourself hope for too long, you lose your chance to say goodbye.

And hope often puts just one more extra burden on caretakers, who end up taking on the responsibility of being the bearer of bad news for well-meaning hopeful types. Nobody wants to be the person who fights hopefulness and optimism and who breaks the bad news that life isn't fair, but somebody has to be the grownup, and it's usually the same people who are doing all the other work, too.

Alzheimer's is a physical disease. There are treatments that can slow its progression, and some of them work sometimes, for a while. But the disease progresses.

There are ways to cope, medically and philosophically and emotionally and logistically, but unless your'e a researcher working on a cure, there are not ways to stop it from happening.
posted by ernielundquist at 2:09 PM on October 10, 2015 [6 favorites]

This was a long, profound, wise, and beautiful read, and it added many previously undiscovered pieces of knowledge and insight to my brain. Thanks for posting it. This is the kind of thing that, when it does it, mefi does best.
posted by blucevalo at 2:40 PM on October 10, 2015 [2 favorites]

There's no getting better. There may be plateaus, but the slope is forever downward. Sometimes my aunt is clear enough to realize what's happening, but that just makes things worse. It won't be long before that's gone too. I almost look forward to that loss of self-awareness if for no other reason other than she might be happier.
posted by tommasz at 3:15 PM on October 10, 2015 [3 favorites]

This is the only post that has left me actually sobbing.

My mom has dementia. We've had an incredibly fraught relationship up until recently. And she's so used to being independent that she's hiding how serious her condition is. Trying to get her care has been frustrating because while I *know* she isn't ready for assisted living at a locked-down facility, her days of complete independence have come to an end. I don't know how to transition her. I don't know how to get an aide into her apartment to keep her company and quietly monitor her condition. I don't know how to help her, even though I'm the only one who has a head for it now.

I've been avoiding Alzheimers' and dementia posts on Metafilter for a really long time, because my grandmother had it and now my mother has it, and genetic probability means that this fate is probably waiting for me, too. But I needed to be reminded that "hope is the enemy."

Thank you.
posted by Ashen at 7:16 PM on October 10, 2015 [5 favorites]

The intergenerational aspects of this article was very helpful. My grandma's memory and functioning have been slipping for about 10 years now. My mom has been taking it personally the whole way down ("your grandma insists that she was in a car accident when actually she fell...it's just a game to her." or "she Has been taking the wrong pills this week. Just out of spite."). I've been trying to point out the reality to my mom of grandma's loss of function for *10* years and now I can understand better why that may never sink in for my mom.
posted by Tandem Affinity at 7:18 PM on October 10, 2015 [3 favorites]

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