playing god

It's what she'd want, Lisa says, "if she could understand."

I nod, knowing this is true, but still facing a dilemma inside my head.

We've been looking over Mom's "Directive to Physicians," a document Mom drafted back in 2005, back when she was well or rather back when we had no name yet for what Mom was suffering from, Alzheimer's. Ensconced in the private dining room of the Mirabella, we sit side-by-side at the long dining table, covered in a white linen-type cloth. The table has wood legs but the top surface is padded cotton--no wood in sight--a strange concession to practicality. Down the hall two rooms are Mom and Lorna. When I stopped by a minute ago, Lorna and Seble were changing Mom. I said hello, kissed Mom and moved quickly out of the room, knowing I had Lisa to meet.

Recently Lisa and I realized that the Directive Mom executed in 2005 did not match the "Blue Form" I filled out on behalf of Mom when she was first admitted to the Mirabella in early September. The Blue Form determines what kind of care Mom will receive in an emergency or in the event she should lose consciousness or sensibility and not be able to make these medical decisions for herself. The most critical question on the Blue Form is the CPR or DNR (Do Not Resuscitate) decision--whether Mom's heart is to be restarted.

I've been reading about "end-of-life-planning," as Julie Grey (MSW, LICSW, GMHS) puts this in her paper entitled "Let's Talk!" According to Gray the survival and recovery rate for those receiving CPR is very low, despite TV shows suggesting that people receiving CPR intervention consistently recover and in a short period of time. It turns out that for patients over seventy, only 4% survive to be discharged; this drops to 2% to 4% for patents depending on others when admitted. Those who survive do not fully recover but rather have a significantly diminished quality of life, most often becoming more dependent on others for survival. Apparently CPR itself poses a risk to elderly patients in particular through the possibility of broken ribs and punctured lungs. Receiving not enough or too much oxygen in the process of receiving CPR often produces brain damage or hyperventilation, either of which are seriously damaging. All on all, it seems CPR is not a panacea.

Mom's Directive does not address CPR. Instead, it says--"no artificial hydration" and "no artificial nutrition" in the event she is diagnosed with a "permanent unconscious condition." I remember the day in August when she signed this document. Eric, Mom, myself, Chuck (her CPA) and Jessie (her lawyer) all around one very large conference table in Chuck's office. Mom can't come to a decision about the rest of her estate planning documents--such as the QPRTs (and the guess the IRS requires her to make as to how long she will live) and whether to disinherit Peter--but she can, it seems, decide about her end-of-life decisions. I remember her checking and initialing the boxes for "No" to hydration and nutrition. Jessie had explained all of this to her, several times--about when the Directive would come into play, what the "Yes" and "No" choices meant. She hadn't said much, but quickly and surprisingly agreed to sign the Directive without much encouragement. In my mind, and perhaps her mind also, this all seemed so far away--a time when she would not have the presence of mind to make these kinds of decisions for herself. In several weeks we were all headed to Idaho for our annual hiking extravaganza, where the goal was to hike as many trails, summit as many peaks as possible in two weeks. Mom would be there with the rest of us. She seemed sound in body, walking her usual four miles regime everyday, even if her mind was starting to show signs of dementia--losing hats, misplacing checks, getting disorientated in familiar places, tripping on sidewalks when walking, becoming unable to make basic decisions, such as what to order at a restaurant or what bills to pay and when.

Mom and I never talked about the Blue Form, or at least not when she still had most of her faculties. The first time we were asked to fill out such a form was nearly two years ago, when Mom changed doctors from Dr. Rice to Dr. Addison. By this time, Mom was early-to-mid-stages Alzheimer's. She had little understanding of what the form said or what the consequences could be for filling out the form one way or another. Nevertheless, the form needed to be completed--to leave it blank was to leave these important decisions up to the hospital, the doctors, the courts ultimately. As her power of attorney, I tried to explain each question to her. I listened hard for what she said and for what she didn't say, trying to decipher Mom's intentions when maybe she herself didn't know what they were. As it turned out, the boxes we checked displayed an intention other than the Directive Mom signed years before, though at the time I couldn't remember what her Directive said. We checked "CPR," we checked artificial hydration and artificial nutrition, we checked antibiotic intervention: Mom was going for a "full code." Why? Did Mom really know what we were saying, what I was checking on her behalf? Why did I fill in the boxes, wondering if she understand what was being asked? Wasn't that my job, as her power of attorney, to carry out Mom's wishes? Or was my job something else, to fill out the boxes based on what was in her best interests, irrespective of what I thought she wanted? And who was/is to decide what this might be--her best interests? Hasn't this been the problem all along, with every decision Eric and I have tried to make regarding Mom's care--that what she seems to be saying now, in her incapacity, doesn't seem to match what her doctors think is best for her, what we think is best for her, or what she may have wanted long before her stroke? Who is to decide?

Upon admittance to the Mirabella, the Blue Form reappeared once again--one of the many documents I signed that late Friday afternoon. We were all deep in grief, trying to adjust to the fact of Mom's stoked body, immobile and nearly insensible. I wanted Mom alive, no matter what. Or at least I did at the time.

Three months later, I wonder about that Blue Form--what it should say, what Mom would want it to say, what I want it to say and whether this is relevant or not. What are Mom's intention? Lisa and I have been talking about this for forty-five minutes, trying to determine what Mom wants, what is best for Mom. The only thing that seems clear to me is that in August of 2005 Mom foresaw a time when she might not want to have her life artificially prolonged. This is important to me as it suggests an intention to not be a "full code"--that she saw herself as a DNR. Had I remembered this back in September I would have filled the form out differently, wouldn't I?

At least once a week, back in October and November, I remind Lisa, Mom would say to me--"I can't do this" because rehab seemed too difficult, pointless even. She was aware enough to know that the state she was in was not something she relished--it wasn't "living." Now rehab has ended and Mom is unable to move her body below her waist and only has limited control over the movement of her arms and hands, what is her quality of life, I wonder?

What is a good day for Mom? Having visitors? Thinking and talking clearly enough to answer basic questions for herself--are you hungry, do you have a headache, do you need a pain med? Ice cream for dessert? Watching CNN? A kiss from her daughter, her son? When is this not a life?

Filling out the Blue Form has the feeling of playing God, that somehow I'm making a future decision about whether Mom will live or die--that the box I check on Mom's behalf with tell the medics, the nurses, the doctors what is to happen to Mom.

I don't want to play God. I just want my mother alive, whole.

But really, as Lisa points out, I have no power over either of these. She tells me about one of her clients who struggled with this very thing--about whether to provide antibiotic intervention each time her terminally ill husband contracted pneumonia. Every time his lungs filled, she overrode the directive, ordering the necessary antibiotics. Finally, when she came to the point of saying--"No, no more medication"--he recovered anyway, despite her decision to withhold treatment.

Mom will survive or not based on her particular body, on the universe's plans for her soul. I have nothing to do with this.

Mom will die when she dies, no matter what the Blue Form says, no matter if I check the DNR or the CPR box. No amount of my grief or longing can keep her alive.

Deeply, a mother's daughter
--this is aliferwithmom--