Hygroma, Hospice, and CD–A Mixed Bag

This week has been far too interesting and I’m still trying to absorb everything.

First, the hygroma. Richard and I thought we had the whole month of December off, with no appointments or procedures scheduled. Wrong. His neurosurgery team was concerned about his hygroma, a fancy word for the cerebro-spinal fluid that’s filled the cavity where his tumors were removed. So they asked him to come in for a CT scan and a consult on Wednesday. After ascertaining that they really wanted to expose his brain to more radiation (last winter’s gamma-ray treatments were more than enough for one brain), we agreed.

Richard

Thus, Wednesday morning, we headed over the mountains to Denver. The weather cooperated, the roads were clear, the scan went well, and the neurosurgeons were pleased–the fluid hasn’t changed since his MRI three weeks ago, he’s got no symptoms that concern them, and there is no sign of tumors returning. All good. In fact, very good. (Doesn’t he look great striding across the snow in the photo above, shot on a stop in our drive?)

We were heading home at three that afternoon, delighted at the news and calculating that if we hurried, we’d make it over the highest-elevation parts of the drive before dark, when my cellphone rang.

It was my Dad, calling to say my Mom was in the hospital for a blood transfusion. Her red blood cell count had crashed, and she had been incoherent and incontinent the previous night. “She wants you to come,” he said, “But it’s your call. She’s getting good care.”

“Do you need me?” I asked. “No,” he said. “Save your energy to take care of you and Richard. But she wanted me to tell you to come.”

He put my mom on the phone. “Please come,” she said in a faint, shaky voice. “I’m scared.”

We turned around and headed for the hospital. The anxiety from my mom’s Alzheimer’s does not make hospital stays easy. Nor does her physical frailty–she probably weighs 82 pounds soaking wet. She just wants to be home, and can’t understand why she has to be poked for IVs, have a catheter put in, endure having the dressings on her bedsores changed, and so on. She isn’t even really interested in eating, though she’ll open her mouth for food if it’s presented. (As long as it’s not broccoli, or canned peas. Chocolate pudding goes down best.)

After talking her condition over, we agreed that Mom needs great pain management, drugs to handle the anxiety, and daily nurturing–and she needs to be at home, with my dad, who is her rock. And my dad needs help caring for her. So on their behalf, I asked the doctor if she could give us information about palliative care–care that aims to comfort and support, rather than intervene aggressively.

This afternoon, the hospital’s wonderfully compassionate palliative care team assembled in my mom’s room. After a two-hour meeting (we’re home again, so I participated via speakerphone), we have a plan: once my mom’s stable and strong enough to go home–perhaps tomorrow, more likely Sunday–she’ll be released into in-home hospice care.

MomandDad

“How are you?” my brother asked when I reached him this evening with the news. “It’s a relief,” I said. “I know she’ll be happier at home, and this way Dad will have help to care for her.” I knew what he was really asking though: Am I okay with recognizing that Mom’s going to die? “I don’t know whether she’s got weeks or months, but I know she wouldn’t want to go on like this.”

“What about you?” I asked. “Ditto,” he said.

Of course we’d like Mom to live forever. But it’s very clear that she’s on a downward slide. So we’ll let her go as gracefully and lovingly as we can. It’s how she taught us to live, and since she brought us into this world, the least we can do is help her graciously as she continues on in the cycle, however long that takes.

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To end on a more cheerful note, a quick brag about my “WildLives: Celebrating the World Around Us” CD project, released this week the day before the maternal-health you-know-what hit the fan. Women’s Memoirs featured WildLives and the story of its creation in an audio interview and a Youtube video this week! And as of this afternoon, our wonderful local bookstore, The Book Haven, has agreed to handle distribution. So if you want a copy, give them a call at 719-530-0249 or email thebookhavenlisa at gmail dot com.

I was able to play the WildLives CD for my mom in her hospital room; hearing my voice was so soothing to her that she slept for several hours. I regard that as a great endorsement…

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