Thursday, March 24, 2005

Dr. J

My oldest sister (J) lives near my mom and looks after her. Well, Mom is actually in an assisted living facility, so there are paid professionals available to look after her. But my sister fills in the gaps and honestly takes on far more than she needs to, given the other available resources. She cooks meals for her even though very good meals are provided. She drives Mom to church even though other rides are available. She gives Mom her weekly shower even though the staff is able and willing to do it. She does Mom's laundry, whereas most residents have the staff do theirs or do it themselves in the coin-operated laundry. But I'm glad she's there for Mom and Mom appreciates her a lot.

J does a fair amount of reading online and in lay reference books about Mom's (and her own, and everyone else's) medical conditions. She doesn't have a medical degree. Never took biology, as far as I know. Didn't finish college. But it is her unwavering belief that she knows more about medicine than any of the doctors looking after Mother.

At first, this was charming. Now it's starting to bug me.

For example, here are selections from an e-mail she sent my sisters and me this morning:

Took mom to the dr on Tuesday -- [my daughter] suggested that the blisters on her leg were from shingles, and I convinced myself that it was -- he said that it looked infected (I didn't because that leg is always a little red) but he gave her both an antibiotic and the med for shingles.

Then yesterday I took her to the foot doctor and he basically said as long as it's not bothering her, he's through with her. I looked at the x-rays and they don't look much different. He made the statement that "sometimes these don't heal", but basically if it doesn't bother her, not to worry about it. I think all these doctors try to protect her from knowing too much and talk in riddles -- to me.

J is a worrier. Okay, obsessive-compulsive. Like my dad was. Like I am, to a much milder degree. She gets off on tangents. She can spin out of control with a single worrisome thought for days at a time. She equates worry with love. She fears Mom's doctors will miss something important and can't let herself trust them, even a little bit. She is vigilant. Which might be a good thing in moderation but is problematic when it colors every interaction she has with one of Mom's medical professionals, when the hidden subtext of every conversation is, "I know you are incompetent and I have my eye on you, buster."

It's next to impossible to stop her. Any suggestion that she should just let the doctors do their jobs will be met with hurt feelings, defensiveness and anger. She's the one who stepped up to the plate to take on the lion's share of the burden, after all. This seems to entitle her to full control over all Mom's medical issues, with no questions from anyone.

She's bossy and she loves to be in control. In my family, who doesn't? Mom is passive and very happy to have J in control. Even if she's wrong.

At the same time, I realize that medical professionals, especially in these times, can be over-worked and do make mistakes. I used to work in a hospital. I have seen the results of malpractice up close. I would never recommend timid compliance for any patient.

It feels impossible and scary.

With the Schiavo case in the news (all day, all night, every day, every night) I have to wonder what will happen as Mother moves closer to the end of her life. As far as I know she has not signed an advance directive. I know she does not want heroic measures because we've discussed it. I will be talking to her about Living Wills when I call this weekend. I could do further damage to the tenuous relationships between my sisters and me by having this conversation. But it's a conversation that needs to be had.

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