I'd promised that I'd respond to Lucy's comments about caregiver rage, drama and detachment. There's a lot to think about and I'm still in the middle of the process. But here are a few working notes.
Lucy wrote:
My experience and observation lead me to believe rage, paranoia and disinhibition in people with AD exist in proportion with caregiver rage, paranoia and disinhibition...
I have little doubt that your ability to treat your father's condition as a reality rather than react to it as a cosmically unfair tragedy (to either of you), has prevented it from becoming more of one.
First of all, that's quite flattering. Probably not accurate, but flattering. So thanks.
As to what happens inside the mind (and brain) of an Alzheimer's patient, I can't say -- I'm not remotely qualified. It's possible that caregiver rage feeds patient rage. It's possible that patient rage is self-generated. The other week, I sat on a train next to an Alzheimer's nursing home administrator, and we got to talking the way you do on trains. She said she thought Alzheimer's rage was an initial-stage phenomenon -- something that happens when the patient is aware that things are going wrong, and gets angry about that. Interesting, but I'm not sure all the stories I've heard bear that out.
And of course it's possible that something purely physical has gone wrong. You take damage in the amygdala and rage is one of the very likely next steps.
It's easier to talk about caregivers since, of course, that's us. And on that score I agree with Lucy that they (we) make things harder on themselves (ourselves) than we have to. The alternative seems cold, but that may be better (more effective, more compassionate) for everybody concerned.
In reading the Alzheimer's boards you come across commentary along the lines of: my father used to be X and now he's Y. Some people can find things to appreciate in Y, but mostly they're distressed. This is understandable. We're all wired to think that way and react that way.
But if you can managed to back off from it, you realize that the X/Y comparison isn't very helpful, and it may not even be accurate. For example, in my case, I could say that my father used to be a bright, articulate capable person with a sharp sense of humor who brought me up and gave me everything and made me what I am, and so forth. And there's something to that. But what I'm describing isn't him. It's my version of him. It's based on a set of childhood memories that aren't necessarily reliable. It also has a lot to do with my needs -- there used to be someone stable and authoritative in my life and now there isn't.
The fact is that the stable, authoritative person I'm describing only has partly to do with who my father actually was when I was a child. Describing himself at the same time, he might have said that he was a tense, troubled person with no financial security, a complex relationship with his wife that involved a lot of fighting and a lot of really bloody family conflict, the gnawing sense that people didn't respect him, maybe the feeling that he'd gotten something terribly wrong along the way. In other words, he was my father (my perception), but he was also a troubled man in his 40s (his perception). And of course his perception was colored by a lot of pressures and expectations that he imposed on himself, and that were imposed on him by other people... The other people involved would say similar things for similar reasons.
What I'm trying to get at is that "my father who's dying of Alzheimer's" is a real person but also an artificial construct. And that "caregiver son" is a real person but also an artificial construct. To a great extent we're all artificial constructs. And that the dramas we create for ourselves around Alzheimer's are based in reality, but they're also quite subjective and somewhat disconnected from what's actually going on.
Once you recognize that you can begin to step away from "he used to be this and now he's that" -- and step away from the idea that his life and mine are coherent stories that are supposed to come out in some particular way. At that point the fact that he's a certain way now gets easier to deal with. Of course it's distressing, but at least you've put aside the idea that it ought to be be some other way. Which means you can get on with the business of dealing with what's in front of you. As I said before, this sounds cold. It is cold. But coldness may actually allow you to be more effective and more compassionate, because you're less distracted by a lot of extraneous narratives.
Not to go all Buddhist on your ass, but... there's a central idea (maybe the central idea) in Buddhism that says that suffering opens up in the gap between the way things are and the way I want them to be. My father should not be going through this and I should not be going through this. Yes, but we are. There's a corollary to this -- sometimes things are good, but I suffer because I think, or know, that they're not going to stay that way. I can still have a conversation with my father now, but in six months, who can say? Or, project back a few years -- he's having trouble with word choice, and what does that say about where he'll be in 2008? And so I get all agitated. Maybe I'm still good at dealing with him when I'm in an agitated state. But my guess is, probably not.
Buddhism spends a lot of time on meditation. Meditation is a good thing because it can make you calmer, but that's not really the point. Getting calm is a means to an end. The point of meditation is that it enables you to take a good, hard, objective look at exactly the way things are. That means both external things -- my father's new inability to remember his career -- and internal things: the emotions and mental states that come up as a result, and that more often than not get between me and what's going on, and between me and what I need to do. Once I'm more aware of what's actually going on -- my father's deterioration and my reaction to it -- I can work with it better. And I can work with him better.
There's a Zen koan that likens compassion to the action your arm takes when it reaches back at night to adjust the pillow under your head. (There's some good commentary on it here). The action your arm takes is compassionate because it's completely economical and completely unselfconscious. The equivalent might be telling my father his history again because he needs to hear it, and then performing the Heimlich maneuver on him because on the whole you'd prefer he didn't choke to death. So you perform the Heimlich and then sit down and continue the conversation. And then get his diet changed to soft foods. And so on. To act with that kind of economy is a good aim. If you can manage it, it's possible you wind up doing the patient more good, and you cause both yourself and the patient a lot less agony.
If you can manage it, that is. The problem with writing about detachment is that you risk giving the impression that you've actually achieved it. Sorry, no. To the extent I have, it isn't that much of a victory. As I've mentioned, a father isn't a wife or husband, and my father is in better shape and has a better temperament than a lot of Alzheimer's patients. And I've got a lot more help on the ground than many caregivers. And with all that, detachment is something I aim for, but it isn't something I've actually arrived at. There are good days and bad days and a lot of backsliding.
So I'm not writing this as though I've made it to the end of the trip.
Think of it as a few notes by somebody who's up late at night in a cheap, noisy hotel along the way.
Alan-
EXACTLY.
None of us is completely emotionally detached from this, and I'm not even sure complete detachment is a good thing.
I AM sure that the mere insistence that this "shouldn't" be, and the inability to move beyond that toward acceptance of what IS, is detrimental to all involved.
You can call that pragmatic and cold. You can just as fairly call it unconditional love.
I don't think there is a single reason rage exists in AD patients. I'm sure there are emotional and physiological factors involved for most people. I doubt caregivers "cause" it, generally. I do know that we can make it worse. I also think it's far more possible to make it better than we usually realize.
AD is a loss. Even if it's just the loss of an abstract and possibly deluded notion. I think we ARE wired to be distressed about that.
I also think we're TAUGHT to be distressed about it. We obsess about our own losses and frustrations, and our obsession is so reinforced that we fail to see there IS more we can do than just be distressed until biomedicine rides in on its white horse to save the day.
I'll stop before I go off on a tangent about the many broad implications I believe that has. Suffice it to say that I believe the tag line "Alzheimer's Disease is Not a Normal Part of Aging" is a half-truth with a possible agenda.
I'm sure you haven't achieved total acceptance. That you even aspire to accept that this "is what it is," and consistently ask "what is it?" is good. It's a necessary and unfortunately rare perspective.
I'm not just blowing smoke up your Buddhist ass.
Posted by: Lucy | March 12, 2008 at 11:39 AM