Monday, October 06, 2008

generations, bridged

My mother began coughing up blood a week, maybe two weeks ago, but what finally got her to go to the doctor was her uncontrollable blood sugar. She has had Type II diabetes for many years, and usually her sugar has been well-behaved; she pays attention to it -- sort of. She thought she'd been OK for years, but then, she only tested it in the mornings, when it was almost always good. She didn't realize it could be great every morning and sky-high every evening.

Anyway, she has chronic kidney disease and a host of symptoms from that: anemia, breathlessness, fatigue. Still, she doesn't quite meet the criteria for dialysis, and even if they told her she needed it, she just might say "thanks, but no, thanks."

Between rheumatoid arthritis in her hips and spinal stenosis, walking has become very difficult for her, severely limiting her ability travel. She could cheerfully deal with all these medical conditions, I think, if she could still pop over to Europe a few times a year.

Back to the newest and most acute symptoms: it's hard to tell what's really going on. She had a CT scan, and she told me the doctor showed her some black spots, but also white spots all over the place, so it's probably an infection. She told one of my sisters it could be cancer. She didn't mention the black spots at all to one of my brothers... you see how this goes? She selectively edits, and so we must all compare stories and fill in the gaps to get the complete picture. She doesn't lie, but she feels perfectly OK omitting details or shaping a narrative for each of us.

She's on antibiotics; the pulmonologist is going on the theory it's an infection, with good reason. Mom broke a tooth sometime late last spring and didn't get it fixed until September. Several of us knew about it and nagged her about it over the summer. I offered to drive her to the dentist several times, but she wouldn't go. What were we supposed to do, throw her in the car and take her against her will? She's a grown woman, and she's our mother and we just had to back off and let her handle it. She "handled" it by ignoring it until her blood sugar went crazy, and that finally got her to do something about it.

There's a good chance she has pulmonary actinomycosis, from the reading I've done. That would be the "white spots everywhere." The black spots are very worrisome. The doctor has ordered a biopsy, which hasn't yet been scheduled. I don't know if they could do a needle biopsy because Mom is coughing so much; you must remain very still for those. She has been on the antibiotic for several days now but is still coughing so much we can barely converse -- a few minimal exchanges provoke a fit of coughs and she's off the phone.

This is very unsettling of course, creating a sort of background level of worry that I try to ignore since it's not something I can do anything about. I remembered this evening that Mom has a DNR, and that just upped the anxiety level to the point where I don't want her to go for the biopsy because if anything goes wrong it could kill her, and they would be legally barred from reviving her (the way I understand it).

She is tired. Some days she is at peace with the idea of dying, some days she's so annoyed by all the nuisances she has to endure that she talks more positively about doing things to get better. But those periods of enthusiasm are short-lived, and she always finds an excuse to stay away from the pool, or skip that round of physical therapy. She's getting smaller and more frail by the day, and hours of coughing each day are taking a lot out of her.

What can we reasonably ask of her? "Don't die, Mom," seems like too much, some days. When she tells me she's ready, I tell her I'm not, we're not. I don't care if that's selfish. I don't want her to suffer but we're not at a point yet where I can say to her, "It's OK, you don't have to struggle anymore." It's not up to me to give her permission, anyway; she certainly doesn't owe any of us anything.

Somewhere or other recently I restated one of my fundamental beliefs: we all have the lives we want to have. But how many of us get to have the end-of-life we want to have? Who am I to tell my mother that she can't submit, that she has to keep fighting? Hasn't she struggled enough? How can anyone else possibly know the answer to that question? She is the only one who knows, and from 2,500 miles away, it looks as if she can't quite decide, and so lets her self slide for weeks or months, only to be brought up short by some symptom she can't ignore. Then she's thrown into a new cycle of annoying medical care, a "waste" she has told me, more than once. Each time this happens she slips a little further down, and her recovery is less and less satisfactory. I'm grateful for these efforts she makes, even while I'm irritated that she procrastinates so long. (My father did the same thing, he kept expecting to die and so waited nearly a week to go to the hospital after his heart attack. Eventually it was his lungs that killed him, years later.)

It's possible for a death wish to be rational, but it's impossible for me to calmly accept it, at least for now. I can't do a thing about it. I can't even talk to my mother about how's she really feeling these days, because she can't talk on the phone for longer than a few minutes. This would not be a 3-minute conversation.

I read a quote once, about how becoming a mother meant being accustomed to having your heart walk around outside your body. But I think it works the other way, too: If I am my mother's heart, she is mine, too, and she always has been. I am suspended between the generations, my mother and my children, our one heart stretching back to her past, forward to their future. I can no more control their paths than I can dictate to my mother what she should do. I only know that we will all be immeasurably diminished when that tie to her falls away. I do not know how to say these things to her. It is not possible to release someone while at the same time holding her so close she could never leave, but that's what I have to do.

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