More on Caregiver Rage: Notes from a Friend

Getting back to the conversation about patient rage and caregiver rage... I got an e-mail the other day from Adam Kasanof, an old friend, new reader of the blog, and probably the smartest person I know.  He had a few ideas to share that with his permission, I thought were worth quoting in full:

Let me offer a few thoughts on caregiver rage, not based on my own direct experience with Alzheimer's patients, but from my observations of situations involving friends of mine.

In some cases, I think caregiver rage is a kind of denial.  If I argue with you, or am angry with you, in a sense I am operating as if you were a rational person. When I fight with you, or am angry with you, I am saying:"You intentionally do things that I don't want, or purposely do things to annoy me, and you are capable of understanding this, and changing your behavior, if you want to."  Of course, if you have Alzheimer's, what I'm saying isn't true. Your undesirable behavior is largely a product of a disease process.  And if I stop being angry at you, and fighting with you, in a way I'm acknowledging something I don't want to admit to myself: that you're sick, and probably not going to get better.  By treating you as fully rational, and fully responsible, I am pushing away a reality I don't want to face.  I think this dovetails into a point you made about people feeling a sense of loss and disturbance at the changes in their loved ones.  "He's not the same person anymore." In the case of Alzheimer's, letting go of an anger response is another way of acknowledging that the person has changed; the person, such as a parent, who was a caregiver now has to be taken care of.

Another part of anger is reflexive, I think. Our reflex analysis of the world is that other humans are rational, and make choices, for which they are responsible. So my impulse if you do something that I don't want is to react as if you were rational.   It may take a conscious act of will to say: "Regardless of how I feel, and how annoying this person is right now, they don't intend to cause harm, and it makes no sense to respond angrily to them, because that will just upset them more." I think you saw part of this process in the problem with your father canceling  his weekend caregivers.  The default reaction of the person doing the scheduling was to assume that a rational-seeming person was communicating rationally to them, instead of recognizing that, since he was an Alzheimer's patient, he might not have been doing so.

I would also agree with Lucy's idea that the more anger and disturbance cargegivers show, the more the patients are likely to be angry or disturbed. A similar dynamic applies even for people who do not have Alzheimer's. If a leader or authority figure appears panicked, for example, followers or subordinates are much more likely to panic, as well. Remaining calm when dealing with people who have mental or psychological problems or illnesses is standard operating procedure for police officers, EMT's, doctors, etc. Of course, this can be a lot easier said than done.

Some caregiver anger obviously is a reaction against a difficult situation, and as you note, a la Buddhism, after a point this reaction isn't helpful because the facts are what they are, and being angry about them can't change them. And I think you are very honest in saying that detachment is a lot easier to have in theory than in fact.  There's a Zen story about the young monk who comes to the older monk and talks about feeling calm and empty.  The old monk hits him in the head with a stick, and the young monk gets angry. "If you're so empty," said the old monk, "then where did all that anger come from?"

I agree that anger in Alzheimer's patients may not follow a simple pattern. In some cases, it seems clear that people with Alzheimer's may be enraged for a seemingly irrational cause, or even a cause that can't be readily determined.

What I find especially interesting (among many interesting points) is the idea that caregiver rage and patient paranoia are mirror images of each other -- in each case, the individual concerned is trying to construct an explanation ("You could do what I want but you won't" or "People are sneaking into my apartment and moving the furniture") for something that doesn't make sense.  Anger and fear are difficult but the alternative -- pure irrationality -- might seem worse.

Thanks to Adam, and open now for further discussion.

Comments

[Julie E]

I have to say thank you again as the recent post is exactly where we are now in our descent. I'm still trying to make my husband see things by explaining and I respond with anger when he gets angry, escalating to tears and comments of "you should just leave," from him. I can't seem to get it that he just is no longer a person able to think rationally in some areas, but in others he can and seems so normal. I'm still stuck with my emotional brain running the show. But to have it explained so
well by your friend has made a bright spot in my day. I wonder though, would it be alright to just do as the old monk did and hit him in the head with a big stick?

[Lucy]

I think Mr. Kasanof has some excellent points about denial.

My rage has been in large part about the inability to let go of my illusions - it's been selfish. I think it also, paradoxically, has roots in the loyalty and respect I have for my mother. Conceding that she is not "reasonable" has felt both disloyal and disrespectful.

When I fight with my mom now, I think I am sometimes I am still attempting to assign a meaning to the situation. I accept that she is not capable of reason, but in the moment, if I can't divert it, I need there to be a reason for her rage. So I provide it by having a fight. Perhaps it's what my father was getting at when he used to tell me "Stop crying or I'll give you something to cry about."

Unsurprisingly, I don't find much more success with in approach than my dad must have.

[Alan G. Ampolsk]

Julie --
In "normal" relationships, we spend most of our time dealing with our idea of the other person, as opposed to the other person. Throw in Alzheimer's and it's much harder to get past that. As to the stick -- it might help. It might also help to be on the receiving end. In current American Zen settings, the stick is mostly voluntary -- you ask for it, usually when you're falling asleep during meditation. I don't have a fully formed opinion about whether that's a good thing, but understand that it can change your viewpoint.

Lucy --
As I mentioned in a post over on the alz.org caregivers' forum, I find I'm thinking a lot about past relationships -- especially with authority figures like parents -- and how they play out once Alzheimer's comes into the picture. I'll try to have more to say about that soon.

It's definitely harsh out here.

[Roberta]

My 83-yr-old mother is a smart cookie, so she tries to marshal rational responses as to why she doesn't need a caregiver.

She has a problem with weak lower eyelids so, to avoid surgery, she needs to tend to them morning and night. She swears she will do this, but I know she won't--and I live 2 hours away. I'm going to let her try, however.

She hated the part-time caregiver I hired for 3 weeks, wouldn't let her help in any way.

I'm the only child, on my own, and I am about to explode with caregiver rage. I've been watching her deterioration due to vascular dementia for almost 3 years now. An Alzhiemer's counselor told me that there will come a point where she'll be docile, but on the other hand I hear about someone's dad who got kicked out of two assisted living places for being so ornery.

Why does it feel like we're all going through this alone?