My Mom, who is 88 years old, has Alzheimer's, and I am her caretaker. No one else is going to do this for her. My Dad died 10 years ago, and I am an only child. I rarely write about how trapped I feel by my situation, and I actually spend a lot of time in denial; but its 4 am and in this quiet, pre-dawn hour I not pretending.
So come with me for a second down the rabbit hole--this will get political, I promise...
I live in Southern California and there are two primary "helping" organizations, the Alzheimer's Association and the Southern Caregivers Resource Center. I became acquainted with the Alzheimer's Association through a "support" group I attended in my community.
This group meets across town for two hours on Thursday afternoons in a residential care facility for the elderly. It is "facilitated" by a middle aged MSW with a perpetual smile and well modulated voice who oozes concern, but not enough to control the group so that the experience of attending it is like being plunged into an out-of-control kindergarten class.
Each Thursday I would show up to find 4 long dining room tables arranged into a rectangle, boxes of cookies and candies placed on them and chairs for about 20 people. And I quickly learned that there is no more needy, desperate, anxious and slightly crazed population in America today than those who caretake their spouses or parents who have dementia. And with each passing week I came away from my "support" meeting not knowing who was "crazier" the helpers or the helpees.
Every meeting was a kind of free-for-all. Structure was frowned upon:
Those who are needy or in crisis"-- self- identified-- please take all the time you need.
And the rest of us then got to listen to the circular reasoning of the damned as they attempted to both cope with and describe the creeping madness in their loved one. I have heard stories of loved ones jumping out of moving cars; throwing keys in the toilet; pausing their vehicle in the middle of the railroad tracks to look at a map. One particularly determined fellow liked to run down the street naked and did so more than once. I listened in awe to the story of the plumber who came to believe he was a day trader and spent his life savings on the internet. I also listened to the angry and paranoid tirades directed at caretakers on a daily basis; to the accusations of abuse prompting interventions by Adult Protective Services; and lastly to the stories of the perpetual neglect and mistreatment of love ones, called LO's, which is the standard of care in way too many residential facilities.
Meetings were like torture sessions. Within 10 minutes of whatever particular recitation might be in progress I was ready to respond. With 15 minutes my patience had huge fissures and I was putting candy in my mouth as a pacifier. At 20 minutes it was all I could do not to leap up and scream, "Enough!" At 25 minutes I began counting the number of people in the room, anywhere from nine to 18 and realizing "their" time was evaporating. I sometimes left these meetings and only 5 people out of 20 had spoken.
I also soon realized that I was leaving more stressed than when I had arrived.
It wasn't that I didn't learn useful things, I did. But I could not adjust to the refusal of both the leader and the group to think `about the whole.' The idea that the leader's job is to think about the good of the entire group is now hopelessly outdated. I know this because I have now tested several different "support" groups and they all work the same way. So in each case the talkative dominate, the quiet ones eat candy and commiserate with them, some people get "their" turn by interjecting their own story into someone else's recitation, and no one thinks about the whole--or even thinks that they should.
I went to another meeting yesterday. And when it was over I whispered to the woman sitting beside me
Are you ok? Did you get to say what you needed?
She shook her head no. And I felt bad for her, but I was more chagrined than she was.
Later as I drove home from San Diego feeling guilty because I do not believe in Alzheimer drugs and every facilitator of these groups "pushes" them--although they say they don't-- and thinking of the stories I had heard, and wondering when my Mom will reach the point that I can't cope alone anymore, I realized that more than anything else I feel abandoned by the refusal of these agencies and these professional `helpers' to think about the good of the whole.
Their failure to be responsive to the needs of everyone around the table is like a metaphor to me for where we are in in our society.
What has happened to us? How can it become the fashion in professional "health care" situations to let the talkative people dominate a group, and let the quiet ones go unheeded? How can we profess to have a just society if we are not responsible for others in a cooperative and responsible way? When did rule by the most aggressive and assertive--become the norm in supervised situations. I am appalled by it.
And I can be both aggressive and assertive, so I have no difficulty speaking up. Now that I know how the game is played I can grab my share of the time. But I think it is wrong.
I think stacking the rec list with your friends over and over is wrong.
I think fighting Obama's nomination is wrong.
And I think all of these things are of a piece: rules that include all the people around a table, sharing the rec list, accepting the will of the majority. It all involves thinking about the whole. Not just my piece of it, not just I'll get mine, not just
they do it, so why shouldn't we?
And so this brings me to the way many Hillary supporters are refusing to abide by the rules about the nomination. Yes, the caucus rules were sometimes rigged and/or manipulated. Any school kid could tell you that. Yes, the Obama team out-organized the Hillary team. Yes, there was sexism and a poisonous media environment with regard to Hill. Pundits will be writing about it for years. Yes, the DNC favored one candidate over the other. So if so much was wrong, why not protest the result?
Because that is not thinking About the Whole. It is not how you do a democracy. If you don't like the way the thing was done, you have to change the way things are done.
Hillary Clinton is a candidate I supported because I know she thinks "about the whole." She isn't going to let the assertive people run the table. She is looking out for the weak and the disenfranchised and the little guy who doesn't have a voice. She is working to make the rules more fair, more inclusive and a whole lot more responsive. Her supporters who are refusing to abide by the results of the primary are not doing that. And they are violating everything she stands for.
Hillary Clinton supports Barack Obama for President. She has asked her supporters to endorse him too. Refusing to do so is like talking for half an hour, everyone else in the room be damned.