Saturday, February 27, 2010

Picking a Fight

This was Eating Disorder Awareness Week, which is why we chose Saturday night for the auction, as a kick-off to the week.  In a perfect world, I would have spent the balance of the week doing related things, like pushing for better health care coverage for individuals with eating disorders, or even writing the many thank yous to people who helped make the auction possible.  Yeah, well, none of that happened!  Work became highly hectic and overwhelming, and I'm thinking to myself all week long, "Wait, this is the job you took because it ISN'T stressful!"  The little group I work with has been warning me about this cycle we are currently in for a long time.  But, I over-estimated both the amount of work and my capacity for handling it timely.  Wow, I feel like someone backed a dump truck up to my cube, loaded with paper I have to process, and hit the release button.  That made the broker's comment about taking time off all the more laughable.  My boss's reaction:  take it if you need to, it'll all be here when you get back.  Yeah, and a bunch more!

But, that all paled in comparison to the mad scramble to try and handle Mother's situation.  I hate what I am trying to do.  Really hate it.  There is something completely horrific about trying to take her last shred of independence away from her, but there is no other choice if I have any chance of protecting her from herself and making sure she doesn't lose the money my dad worked really hard to leave her so she'd be secure.  Then I find myself getting really, really angry at her for putting me in this position.  Then I feel guilty about that because it's the disease, it's not really her.  But, then I get angry again, because the disease takes what was already her core personality and twists it.  It's not like I'm seeing behavior I haven't seen before, it's just amplified and any possible chance of reasoning with her is gone.  Then I feel bad about being mad at the woman who raised me and cared for me.  And so on.  It's a horrible cycle.

And now add that to the horrible deja vu of trying to handle a disease that I understand only on a cursory level.  Of course, I know all the textbook definitions of what Alzheimer's is, just like I did with bulimia, but what you find is that it doesn't help you much when you're actually dealing with it.  Now what you need to know is not only what the hell is happening to the person you're caring for, but how do you effectively handle it?  I got really angry a few times this week with people telling me "You need to do [this]."  The compliance officer for the brokerage firm wanted me to do one thing, which is to try and reason with mother.  Her medical team say that just aggravates her and not to try and challenge her statements directly.  It's like a bit like a fencing match, you have to feint and dodge a lot, with the goal not being to stab the patient, but to eventually just distract them until they forgot about what it was that upset them.  The compliance person tried to tell me that she knows how to handle Mother because she went through it with her mother.  With all due respect, her mom is not my mom.  Her relationship with her parent is different than mine is.  That's the thing that's so hard with both Alzheimer's and eating disorders, it's not just the disease you have to take into account, it's the personality of the individual.  And, it's easy for someone from the outside looking in to judge and make determinations; it's another to actually carry them out.  Everything about both diseases is complicated.  And everything about getting proper care and support is the same way.  More than once this week I was frustrated to the point of acidic tears because I couldn't get people to call me back, or even to call my attorney back, only to find out I'd call the wrong kind of care giver to begin with.  The most frustrating moment came when I found out yesterday that there is someone on staff at the nursing home who helps families with this.  She and I have talked about what I'm working on, she never once mentioned it.  I had been spinning my wheels all week, and I had a resource at my fingertips!  I feel like I've stepped into a nightmare time machine and am right back to where I was almost ten years ago.  Trying to understand what is happening, trying to get the right kind of care, trying to get my job done, maintain my family, and watch the Olympics all at once!

One night during a planning meeting for the auction, the young Vice President of the Foundation, who was a key member of the committee, was excited about news from New York where legislation is being passed to cover eating disorders on the same level as other mental health issues like Alzheimer's.  She talked a bit about going up against the Alzheimer's groups lobbying for funds and attention here in Texas.  Clearly for her, ED is the primary focus.  She was personally affected by it so this is her passion (for lack of a better word).  I just stared at her.  I didn't know what to say or what to feel.  Both diseases tear families apart.  Alzheimer's is a disease that brings to a messy close an older person's life, so from that point of view maybe I can see where someone young can conclude it is something of less importance than other areas of mental health coverage, but the damage it does to the people who surround it and the costs it incurs for care are real.  I hate it as much as I do the bulimia.  I fear it.  And I am oh so tired of always fighting.  Fighting against diseases, against my own ignorance, against the balance of the rest of my life.  If I wanted to join a fight, I would fight against puppy mills, dog fighting, and the Baltimore Ravens fans.  I would not have chosen this one.  But, here I am, and my gloves are on, baby.

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