Yes, there is a theme here

[cahn]

These are three books my sister had me read, in reverse order of how much I liked them.

I am not sick! I don't need help! (Amador) - 5/5 - This is an awesome book, basically the idea of collaborative problem-solving applied to the domain of mental illness, which has the additional issue that the person involved often does not know that they are mentally ill. (The principle is the same with dementia.) The book first goes over anosognosia, the neurological condition in which the person is unaware of their mental illness (or other brain issue) -- which can be super frustrating as it looks a lot like denial, and it seems like if one just provided enough evidence that the person has a mental illness, the person would have to admit it.

Although I'd been familiar with the concept of anosognosia from just looking up stuff about dementia online, my previous online reading had only dealt with it from the perspective of "this is how it presents." The framing of it in this book as the person's self-concept not updating due to mental illness or other brain issues was new to me, and I felt like it made it much easier for me to viscerally understand why the person would continue to be unaware of mental issues even when a ton of evidence was presented.

And the author brings up examples of trying to convince the person that they're sick (his brother had schizophrenia) and how it fails and just makes everyone angry and frustrated. He shows how to instead use a more collaborative problem-solving solution, that crucially goes around the question of whether the person has a mental illness (because the two of you are probably never going to agree on that point) and rather focuses on how to agree on treatment.

It's written in very simple, easy-to-digest language, I expect because Amador wanted it to be accessible to as many people as possible, but it seems to all make sense and I didn't feel that it was too dumbed down or trying to make claims that were too large (see also the third book in this post). I also felt like there was a minimum of fluff, which I feel can happen with this kind of book -- there was a lot of "don't blame yourself," which I didn't need but which many people probably do.

This book strongly recommends that (say) mentally ill patients be treated, but provides conversational blueprints for getting them to agree to treatment even if they don't agree they're mentally ill. The idea is to think about how it would feel if everyone around you was saying you had a mental illness but you were convinced you didn't, and to use that as a starting point to find things you agree on, and build the relationship of trust so that you can tackle the problem of treatment. The acronym he uses is LEAP: Listen, Empathize, Accept, and Partner. (Yes, that's going to sound pretty familiar if you've read other collaborative problem-solving books. And Amador doesn't say he's reinventing the wheel, he totally says right up front that he's basically just presenting other people's work, he's just trying to give it a larger audience.)

I'd love for there to be a companion volume to this dealing with dementia specifically, because of course some of the issues are not quite the same, and it would be really nice to have specific blueprint conversations to work from. And I wrote that and I guess my sister did the next step of contacting the author, whose secretary told her that he has written a more general book about the LEAP method which includes one conversation modeling what to do with someone with dementia. So, uh, I guess stay tuned for that one, because I'm definitely gonna read that.

Highly, highly recommended if you're dealing with someone with mental illness or dementia or other brain issues.

My Father's Brain (Jauhar) - 3/5 - This is a memoir by Sandeep Jauhar, a doctor and writer, about his father's dementia decline (and eventual death). His father was a scientist, and so that decline was very harsh. My sister and I agreed that the author/narrator should really have read the LEAP book because wow does he fall into every. single. trap possible. I guess he's honest about it? It was well written and brutally honest, but I also found it rather frustrating to read because I kept wanting to yell at him to do things differently. I also felt horrible for Harwinder, his father's caregiver who really just did it all herself, and it really kind of felt like they were taking advantage of her.

The End of Alzheimers (Bredersen) - DNF. Okay... there is a fair amount to like about this book, especially the points that inflammation probably causes a lot of crap to happen in people's bodies and that having good nutrition and exercise and so on can really make a big difference in all kinds of bodily functions, including the brain. And it can't hurt to get a full battery of tests to make sure that there's no underlying condition like hypothyroidism, etc. However, by the end of chapter two I was getting a really intense vibe of "I'm here to sell you my patented solution that is super expensive but fixes alllll the problems in the world!" and poking around on the interwebs leads me to believe that, in fact, his solution -- especially the parts that depend on Super Special Supplements that only practitioners Specially Trained in Bredersen's method can provide -- is not properly studied and there's no particular reason to believe it will work any better than good nutrition and exercise alone, plus, sure, testing to make sure there's no underlying condition or any vitamin deficiencies, and those kinds of supplements when needed.

Comments

[mildred_of_midgard]

Ahhh, thank you for the review on the first one! I'm definitely going to check it out. As you know, I like books on collaborative problem-solving in different contexts. :D

I learned about anosognosia in high school, and then it came up again when I read Oliver Sacks in college, and I have used the term in (unposted) fanfic, so I tend to forget that there are people who don't know about it. I did not, however, have any blueprints for dealing with it, and that sounds like it might be useful even without (currently) dealing with anyone with dementia, so this book sounds golden. (It's not, after all, like I never have to have conversations with people who are in denial/not on the same page with me about their issues.)

[cahn]

Yeah, I just found out about anosognosia this year :P

Right, I think the overall framework is probably a good one when dealing with anyone where you're not on the same page. You might want to check out his other book, I'm Right, You're Wrong, Now What? which I am told is more general (and certainly seems so from its title). I haven't read this one yet but I probably will over the next couple of weeks.

[mildred_of_midgard]

Yeah, I just found out about anosognosia this year :P

So weird! One of my teachers taught us about it in high school, and as you know, I went to a crap high school. I started the book this evening, and so far I'm in the section where the author is trying to talk you out of your preconceived notions and build up slowly to the idea of anosognosia as a concept that exists, at which point he will try to convince you that it's applicable. Which I realize my experience isn't universal, but feels a bit to me like, "I know you think the world is flat, but wait! Bear with me, and I will explain to you alternate possibilities that might fit the evidence better!"

Me: ...But I was SEVENTEEN when I learned about anosognosia, circa 2000! I have a whole subplot in one of my fandoms in which an unpopular head of state has a stroke, and his subordinates, who perfectly well know or suspect he is totally compos mentis, are trying to cast a vote of no confidence in order to overthrow him and put someone they like better in charge, and they're trying to imply that he isn't aware that he has a problem, because strokes can do that to you! and he snaps, "I know what anosognosia is."

Well, I'm glad this book exists for other people, but I'm looking forward to getting to the part where there's new stuff. :P

You might want to check out his other book, I'm Right, You're Wrong, Now What? which I am told is more general (and certainly seems so from its title). I haven't read this one yet but I probably will over the next couple of weeks.

Ooh, sounds relevant! I will have to check it out. (I'm thinking largely of upper managers; apparently "I'm right, you're wrong, now what?" is a skill I need to develop better if I want to be promoted any further.)

[cahn]

Why haven't you skipped to Section 2 yet? :)

[mildred_of_midgard]

Truly an excellent question. :)

(Mostly because it's such a fast read that I've gotten this far in just a few minutes. If it keeps going on, I will open the table of contents and figure out where I need to be. ;))

Also, Being Wrong: Adventures in the Margins of Error, another book I may have mentioned, covers anosognosia in some depth--I run into it all over the place!

[mildred_of_midgard]

Ha! I read six more paragraphs and got to:

If you have never talked to someone who has suffered a stroke, brain tumor, or head injury, what I have just said might seem difficult to believe. If so, I recommend that you read The Man Who Mistook His Wife for a Hat, written by the late neurologist Oliver Sacks.

I did read that! In college, ca 2003! And I get that you didn't, cahn, but my emailed question about your sister stands: I thought she went to medical school? And I would have assumed it would have gotten covered in class, or at the very least, I thought pretty much everyone who went to medical school ended up reading Oliver Sacks, one way or another. This is not the case?

[cahn]

I've read some Sacks, and always meant to read this one (I like his writing), but yeah, somehow I never got around to it.

She did go to medical school -- I don't know if she read Sacks; we never talked about it. Which makes me think maybe she didn't, as I have Atul Gawande on my shelf because she made me read his stuff (which I also really like). I'll ask her tomorrow when she's awake :)

[rachelmanija]

Very belatedly but anosognosia makes a lot more sense if you've already read Sacks on anything, because he's full of stories about people who seem completely or mostly normal until they inform you that their left arm is not an arm and doesn't belong to them or that they're totally blind despite being able to catch a tossed ball and correctly "guess" how many fingers), etc.

Neurological issues often involve issues with belief and knowing.

[hamsterwoman]

That first one sounds really useful -- I'll have to remember it. I'm currently not in a spot where I need it, but there was a person with mental illness in our family circle a couple of years ago, and how to help him without being able to convince him of the kind of help he needed was definitely very challenging, and also we did have to deal with a milder case with my grandmother's dementia (which at this point has progressed beyond being able to involve her in anything, but it would've been helpful to have the framework ~10 years ago, when it was just starting).

(If the theme of the books in this post is because of stuff you and your sister are having to deal with -- I'm sorry and wishing you strength. And of course I hope it's not.)

[cahn]

*nods* Yeah, that all sounds very challenging. I... hope there's not a circumstance in which this is useful to you, but if it is I'm glad to have brought it to your attention <3

(Thank you. Yes, my dad. It's mild right now -- he can carry on a coherent conversation as long as you don't ask him to do anything complex or remember something that happened a little while ago -- but he's definitely displaying signs of anosognosia.)

[hamsterwoman]

I'm sorry :( I remember a similar phase with my grandmother, and it was rough, because also it was hard to know the boundaries of what she could still safely do on her own vs not, and of course she thought the answer was "everything she had done on her own previously" because anosognosia :/ So, yeah, all the good wishes for your and your sister and parents in this.

Unrelated P.S. -- L showed me pictures of the floods -- I hope you guys are out of harm's way!

[thistleingrey]

Interesting to think of some forms of mental illness and (some?) dementia in the same bucket. Despite having sat (virtually or in person) with several folks fading with dementia, I wouldn't consider myself capable from it of addressing a peer-aged person with mental illness, whereas dementia in its wild variety nonetheless has some commonalities across individuals, as does age-based physical decay (both limb control and systems-level stuff). To me the types of experience-base feel pretty different. It is interesting to contemplate, though! Thanks for noting it.

I went at the dementia-support thing in terms of preschool-rewind, loosely: trained observers report similar things but in a reverse progression; some of the partnering has to be with them because the person with dementia is decreasingly able to, hmm, shake hands metaphorically or, on some days, remember what a hand is. Didn't know about LEAP but it seems solid!

[cahn]

Yeah, I mean, you have a point -- in general I don't think mental illness and dementia have all that much in common; it's the specific problem of "how do you figure out how to address the topic of getting help with a person who is not able to come to grips with the reason why they need help in the first place?" that can be common in the two populations (and for dementia, of course, only for the very beginning of it).

I went at the dementia-support thing in terms of preschool-rewind

That makes a lot of sense, and I've observed something similar as well; I find myself reverting to parenting-voice and parenting strategies more and more often. (Not at preschool level at this point, but more at, say, elementary school/middle school level?)

[thistleingrey]

Yes, that clarification makes some sense to me. I think that when there's underlying fear/shame about aging (perhaps less an issue on average in East Asian cultures than in W European ones or mainstream US), it can kind of ... get in the way. I would've needed to apply heavy-duty emotional manipulation in one case if convincing the person re: help, and I wasn't willing to try it. Watched carefully and waited instead.

more at, say, elementary school/middle school level?

Yeah, IMO that's the hardest timeslice.

[cahn]

There's a LOT of fear here about losing independence. I don't think there's a good answer here that keeps everyone happy. My sister and I have a hard line that if the doc/OT says that dad can't drive, that it's not safe for him to drive (which hasn't happened yet, but it is of course just a matter of time) and even though I want to respect his independence as much as possible, that doesn't extend to it being OK for him to put other people at risk. And although I'm not sure mom has the same line, I did mention to her that if a doc/OT says he can't drive and then he gets in an accident, insurance may deny the claim, which I think will be a stronger argument for her...

Yeah, IMO that's the hardest timeslice.

That makes a lot of sense to me.

[thistleingrey]

Yes, IMO it's not possible to make (or keep!) everyone happy. Glad you and your sister can pair up and take turns as needed, and FWIW, agreed with your hard line about driving re: potential risk to others.

Can your mother drive independently, or would (uh) grounding your father make it harder for her to get around?

[alias_sqbr]

I looked up "I am not sick! I don't need help!" and came across a TED talk he did, which was really interesting and gave me a lot of food for thought.

Obviously he had to simplify things down for a short talk, and I'm curious to know if the books address the major problem I had when trying to mentally apply his advice to my own life: he draws a very strict line between family members/clinicians as sane and in a position of power, and The Mentally Ill Person as purely being in need of help. He doesn't dig into some of the situations where the LEAP method is going to be hard to implement without causing yourself significant distress or hardship.

In my family we are all mentally ill, and multiple people have (or had before they died) psychosis, dementia etc. Some of the delusions have been incredibly distressing or dangerous, especially when there's power dynamics involved eg younger women with an older male relative, such that being perfectly patient and understanding would be really bad for the "sane" person's own mental health needs.

Like I was left wondering what you do when you're not in his position, but that of his mother. I don't think I could apologise for not agreeing that I'm the devil. Which is not to say that arguing about it will do anyone any good, or that you can't be compassionate to the experience of the person having the delusion, I think his basic principles are sound. I'm just wondering if his book addresses these more complex situations where everyone involved is mentally ill, since I've found a lot of mental health advice doesn't.

[cahn]

Ah, interesting. And no, his book does not dig into that, although (iirc, I took the book back to the library) it does have a section about making sure the caregiver gets adequate care. But just in a general sense, not in the specific sense of "this method could be bad for your own mental health."

In fact I'm really glad you brought this up, because it's made me realize it's a problem in my family -- maybe not exactly in the same way as your family, but my sister has a fraught relationship with our parents and implementing this is very difficult for her; my dad will say something that strikes right in the middle of an insecurity and that's really hard. I actually recently asked her to mute our group text and just check it once a day or something because I have a little more literal and metaphorical distance. Which is a luxury we have because there are two of us, of course.

(This is probably not answering the question either, but: I would never apologize for not agreeing that I'm the devil, either, but I also have way too much experience in distraction/changing the subject when such topics come up instead of getting in an argument about whether I'm the devil, which I think is a reasonable choice, if not ideal. (I have also gotten into the argument way too many times, mind you.))

He did write another book, I'm Right, You're Wrong, Now What? which is more general, so I'll read that and see whether there's anything in there that applies.

[alias_sqbr]

Yeah, sometimes changing the subject or even avoiding someone is the best you can do. Thank you!

[thistleingrey]

Yes--if one has to inhabit a position of strength and rational thinking all the time while lacking the resources to do so, for any reason really, it's impossible IMO to do perfectly or consistently. (My context so far is eldercare only, but for several individuals.)

[alias_sqbr]

Yeah, absolutely.

[luzula]

Interesting! I shall note the first book down for future reference if I need it (my parents are fine so far, 73 and 68 years old, but sooner or later, well...).

[cahn]

I hope you don't need it. This whole aging thing is rougher than I think it should be, in my ideal universe!

[landingtree]

Noting down that first rec, because though that is not something I’m dealing with now, like as not it will be someday.

And also (it occurs to me while reading the comments) I now work in a bookshop, and the more things I can get in-store that I can personally recommend if customers ask, the better! (Second-hand shop: our Health and Personal Psychology shelves are full of things that make me go HMMM though I cannot swear they are nonsense)

[cahn]

Ohhhh, yes, that would be great to recommend if customers ask, if possible!

our Health and Personal Psychology shelves are full of things that make me go HMMM though I cannot swear they are nonsense

arrrgh yes. There is A LOT of nonsense out there, ugh.