The Stages of Grief: Exhaustion, Paperwork, Picking Fights on Facebook...

I've been exploring the stages of grief.  They're not exactly as described.

First there's exhaustion.  Then, as noted, there's paperwork.  Then more exhaustion.

Then there's going around on Facebook and picking fights with people.

This is admittedly odd.  Granted that Facebook is a strange place - sort of like the Web but not really - more a worst-case combination of blogs, high school cliques and cocktail parties where political and religious debates shouldn't happen, but do anyway.  It can be hard to navigate even for people who are totally well put together, which I apparently am not.

As usual with these things, there are small precursor events - little warning signs.  Someone on your Facebook news feed brings up the topic of healthcare reform and one of his friends posts a comment about not wanting to support the sniveling poor, or about how people who are too stupid to stay well don't deserve healthcare (both of these are actual quotes, by the way), and you jump into the comment thread and find yourself punching out the original poster's best friend from high school, who of course you've never met.  While doing this you feel an odd, glassy, unnaturally calm sense of certainty and humorless self-righteousness.  This should serve as a warning sign but doesn't.

Then the big thing happens.  The big thing in my case involves a friend from my former professional life who's decided that Facebook is a perfect platform for posting newsclips that echo his right-wing... oh, I'm sorry, "Independent"... political views.  I'd had one bad encounter with him and his like-minded friends - not the one I mentioned above, but similar.  He invited me to leave the thread (what?  no disagreement allowed?) and I did and I promised myself that from then on, I'd just read his posts and not comment, no matter how high my blood pressure went.  I decided that, in the Zen spirit, this would be my Facebook practice.

It worked until last Tuesday, when he posted a link to this shoddily-arguedop-ed piece about how healthcare reform will run up the deficit, and the Congressional Budget Office is playing tricks with numbers, and healthcare reform is all for Obama's political glory and it's like a family in deep debt that decides to go on an expensive vacation (health insurance is a vacation, right).  The cover note was properly sober and calm ("Be very afraid.")  I broke my promise to myself and posted some contrary links.  He posted some links contrary to my links, and threw in a quote from Benjamin Franklin (why are they always quoting Benjamin Franklin?)  I pointed out some flaws in the points in his contrary links.

Out of the corner of my eye, I noticed that one of the guy's relatives was posting comments like "SIGH" in capital letters.  I tried to lighten the mood with a Bob Dylan quote.  My friend came back with a comment about drive-by shootings that I took to be a movie reference.  It wasn't.  It was characterization of my posts and an angry response to the fact that I was still there.  Excuse me?  You get to post your political views in my newsfeed and that's OK, but if I post my objections in your comment thread, that's a drive-by shooting?  Mind you, I didn't say that - only thought it - but things were tense enough when one of the guy's friends showed up and said he thought that health insurance meant having some band-aids in the medicine cabinet, and that people ought to learn to be responsible for themselves.  In reaction, I posted an apology for having been irresponsible enough to pick bad genes and develop coronary artery disease, and for my father's having been irresponsible enough to decide to pay for my mother's cancer meds instead of buying himself long-term care insurance because he couldn't afford both...

Ten minutes later I was being lectured on why Facebook isn't the Internet.  "Another drive-by shooting," my friend says.  Five minutes after that, I was busy deleting connections.  And there goes a friendship...

Well?  What would you have done if you'd been in my position?

I'll tell you what you would have done.  You would have let the original posting pass, the way you'd been doing.  I mean, what was I going to accomplish by jumping in?  Was I really going to convince him and his friends that their deep convictions are wrong? 

Or you could have elected to hide his posts.  You would have missed the news about his trips to the farmers' market, but you'd have been calmer - and still on speaking terms. 

Or you could have sent him an e-mail and said, hey, I know you believe what you do but if you feel that strongly, shouldn't you start a blog where like-minded people can opt in...?

In other words, there are lots of options, all of them more skillful than what I did, which was not skillful, to put it mildly.

So.  Here we are - sitting in the debris and wondering, what was all that about? 

It took me most of a day of upset (I hate violence, even... no, especially... when I commit it) and a couple of long meditation sittings before I began to realize that my glassy free-floating Facebook anger might actually be a symptom.  It might be a symptom of grief.  It's definitely a symptom of stress. 

It plays out like this.  As a caregiver for the past seven years, I've effectively been in the healthcare equivalent of Vietnam - not in physical danger, of course, but nevertheless cut off in a nightmare world way up country.  I made it through, barely.  Then I come back to the world and find that nobody knows what I went through and nobody really cares.  Even the people who say they do, don't get it.  They can't.  "It must have been hard for you."  "He's better off now."  Yes, but also, "Now you can get back to your life!"  Or somesuch.  Some, including the friend in question, said better things.  Did I mention that the picture is complicated? 

As for those who sprout bromides... I can't really fault them.  They don't know any better.  They weren't there.  Intellectually I get that.  But emotionally I get caught up in the fact that they're in a different world and I'm looking at it through a barrier.  I'm on one side and on the other side there's lots of piggies living piggy lives... posting on Facebook about their wine tastings and how good Blu-Ray is, and about their garages full of Bimmers, which they call their "babies"...  or telling you that hardship - like lack of health insurance - builds character - or at least that if you can't afford health insurance, that's a sign of vice... and anyway they're not responsible for the underinsured... ..

You see how it builds.  You also see quickly the reaction goes over the top.  It reminds me, now that I think of it, of my father's reaction when my mother was first diagnosed with breast cancer.  He used to talk about walking down the street in Manhattan and suddenly wanting to pitch people off the sidewalk because they were out there thoughtlessly going on about their normal business and here you were, bottled up in your own horrific micro-world...

For me the healthcare reform thing, is, obviously, the tripwire.  Most everything else I can let pass.  I can even realize that I'm probably equally annoying - that when I re-post my Alzheimer's blog entries on Facebook, there are people who sigh and roll their eyes and say, oh, great, here's morbid disease-and-death guy again... 

In my defense... there's healthcare reform and then there's healthcare reform.  I'd be happy to debate, calmly and objectively, the ins and outs of healthcare finance - there are many ways to do it right, and many ways to get it wrong, and interesting technicalities to explore, and features of the new bill that are wrongheaded.  And I'm capable of this.  I have wonderful - and civilized - debates with a friend who's a committed libertarian.  He believes every citizen should be carrying a concealed weapon, and I don't, but his arguments are well constructed and our discussions are fascinating and I always learn something.  No, it's when the arguments are half-baked and the moralizing comes in - when people who haven't been in country start preaching at you about self-reliance... and when the thing you've been through is something they brush aside because they're more intent on working out their bright shiny concepts...

Ah.  There I go again.

If you think that none of this reflects well on me, you're right. 

If you're a regular reader of this blog, I suspect you'll understand how I got here.

So what to do?

Interestingly, all the while I've been working myself up and running around being destructive, the nursing home's hospice organization has been phoning me.  One of their services is follow-up counseling for the bereaved.  Do I need to talk to someone?  Oh, no, I've been telling them - I'm doing fine. 

As you can tell.

Here's their pamphlet on my desk - the one where they list the things you'll be feeling, and what to do about them.  I've glanced at it but I haven't really connected with it.  It says things like this: "Your feelings of loss and sadness will probably leave you fatigued.  Your ability to think clearly and make decisions may be impaired.  And your low energy level may naturally slow you down..."  Oh... uh... right.  That sounds vaguely familiar. 

And: "Anger: If you came from a dysfunctional or abusive family, you may well feel unresolved anger toward your dead parent.  His or her death may bring painful feelings to the surface.  On the other hand, you may feel angry because a loving relationship in your life has prematurely ended..." 

Now, see, all of that is a little misleading.  I'm not angry at him, I'm angry at those smug, self-satisfied civilians... I'm angry about abstract points of public policy...

Right?

Hmmmm.

This needs exploring.

So how to do that? 

A few possibilities.  First, start to come to terms with what happened.  Re: my father's death, that'll take work.  Re: the Facebook explosion, that's easier.  I accept full responsibility (because I did what I did) but not sole responsibility (because when you go around Facebook with gasoline and matches, lighting off political discussions, it's odd to complain when you get burned). 

Then, avoid political debate and maybe spend more time with fellow caregivers.  Sort of like veterans groups, you know?  I'm already aware from some conversations that I'm not the only current or recent Alzheimer's fellow traveler to get into a Facebook flame war or two.  There's a lot of symptom formation going on here.  Those who understand, will understand.

Finally - and most simply - the next time the hospice counselors call, maybe I ought to pick up the phone and have an actual conversation. 

Because much as I'd like to convince myself that it's all behind me and it's all fine... it's not.  And apparently I'm not.

Revised message to hospice staff: Looks like I'm going to be dealing with all this for a while longer.

 

Comments

[Cathy]

Hi Alan, I understand the anger-grief connection very well. I went through it when my brother died so unexpectedly 2 1/2 years ago. At the time I didn't have the insight that you have. I just flared up at everyone and anyone. I finally got myself connected with a counsellor and it really did help to talk it out. We also have "grief groups" out here in
Colorado. They give you a chance to talk to others experiencing their own grief. You will get through it, but be kind to yourself and talk to the grief counsellors. Best wishes always, Cathy

[Al B]

I am and will remain your friend, mischaracterizations and overreactions notwithstanding. Live long and prosper.

[Alan G. Ampolsk]

@ Al B - check your e-mail.

[JCL]

Loved your post. I haven't read your blog much....I'm from the Alz message boards....but decided to take a look today.

But I have to admit that I admire your decision to honestly communicate your feelings on FB, even when it causes you stress. I also have deep political divisions with some 'friends'....and sometimes I feel like a coward when I don't confront them about the differences.

During the Obama campaign, I did finally get frustrated with yet another anti-Obama smear email, and did a 'Reply All' to a large group of people I mostly did not know. And I did receive 1 Thank You, from someone else on the distribution list who completely disagreed with the Sender. Fortunately, I guess I responded tactfully enough, and my relationship with the Sender is still intact.

I recently placed my dear mother in a secured dementia unit, and I'm terribly sad, though not guilty at all. So I finally had time to call a nearby university Research Clinic, which is looking for 'normal' volunteers for their research. I know it will make me feel less powerlessless against this disease. Maybe something like this may help to ease your grief ?

[H]

thanks for this. a little balm for the soul. my husband and i recently started down the rabbit hole of care taking. my father and law and mother in-law are both dying from cancer--at the same time!!! my husband and i were shuttling back and forth in the hospital between their rooms--literally running down the hall to make sure not to miss the doctor's visits. crazy! i told a friend today: i'm numb and irritable. then i said no..i'm enraged and i think i'm about to explode. i told my therapist last week that i'd discovered a new emotion and it was exhaustion. reading your blog is my first (accidental) care giver support activity. i found you because i had googled "can you cut seroquel in half?" father in law ran out of his liquid seroquel even though his friends told us he had plenty. now he's out... thanks and best to you and your family. h

[Karen]

Oh wow. I just ran across your blog and can relate to some of your feelings. I gave up my life back East 2 and 1/2 years ago to come to California and live with my brother, who had cancer. Had a 4-month detour into taking care of my father, who had worse cancer. Father died and I moved back in with my brother. My brother died last week. I'm so exhausted I barely know what day it is, and what you wrote about the stages of grief consisting of exhaustion, paperwork and more exhaustion -- that's exactly it. I want to "get back to my life" but it's hard to imagine what that means, in my current condition. If this is the state I'm in after 2 and 1/2 years, I can't imagine what it's like to go through seven. Hats off to you and thanks for blogging.

[הגנה עצמית]

I feel strange, glassy and ​​unnaturally calm sense of confidence and humorless self-righteousness.

[moncler vest]

Now we have a great walkway that goes to the beach and to the canals that came from the partnership of community with government