Ball of Confusion

I am more confused and frustrated and unsure of what we're doing than ever before.

Every medical person we've talked with prior to today has told us that where Dad was right now was pretty much where he was going to be. The decision was remarkably uniform: Dad had little chance of regaining communication skills, physical or intelluctual functionality, eyesight, or any independence at all.

Today, Dr. Bill Naguszewski tells us that Dad is a good candidate for rehabilitation and that he could "survive." He would not address any issues of quality of life in response to my questions except to throw out the rhetorical "who can measure that but God?" When we told him that the family was considering discontinuing nourishment and hydration as per Dad's living will, he commented that "it's tough for us to play God, since we never know what the outcome will be."

Dr. Naguszewski has requested that we let a peg tube be put in Dad's stomach and that he be given food and hydration for a few days for further measurements. We have agreed to that, but the more I think about my meeting with him, the more confused and unclear I am.

First, Dr. Naguszewski seemed to indicate that he considered physical survival as the measurement of success of treatment; he absolutely refused to address quality of life, adding only that he had seen patients in conditions similar to Dad smile or laugh again before they died. This did not seem to me to truly address one of Dad's vital concerns at all.

He talked about sending Dad home, but he defined "sending him home" as either putting him in a nursing home or hiring a 24-hour sitter to be with him, which he suggested we pay for by getting a reverse mortgage on Dad's house in order to get enough money to pay for four to six months of 24-hour specialized care.

He told us that he wasn't seeing much evidence in the CAT scan that Dad's Alzheimer's was very bad, ignoring first-hand evidence from us regarding the steep decline of his intellectual abilities, the increasing emotionalism, the loss of recognition and memory, the deterioration of his gait and stride, and his alienation from the outside world. Apparently a print-out on the computer screen negated everything that everyone who knew him had witnessed for the past year.

When I asked about the Alzheimer's again, he said, "I can't address that precisely, but it's possible the treatment might help with that as well." He mentioned that Aricept was used to treat both Alzheimer's and strokes, but was imprecise as to what results we might expect--even though other members of the neurology team said that Aricept can't do anything to reverse Alzheimer's complications, only to slow down the continuing decline... and that only worked in some patients.

Never once were other health issues, like the plaque buildup in Dad's carotid or the blood in his stool, addressed.

Nor was any discussion given to the matters of Dad's attitude towards nursing homes, dependent living, leaving and/or losing his house rather than pass it on as a legacy to Cole or Jess... "Some nursing homes are nicer," he said, "and some people are happy there once they adjust," even after we told him how vehemently opposed to nursing home living Dad was, and how he had expressed the opinion that one friend who had a stroke "would have been better off dead."

The more I have thought about our meeting with Dr. Naguszewski, the more I feel that he measures his success by how long the body continues to live. I also have to confess that the nature of his comments regarding "playing God," and the tone, lead me to believe that he does not accept the concept of death with dignity so long as some level of existence can continue. He seemed to feel that one year of dependent living with 24-hour care was worth all the effort, hardship, and pain, since he cited that specific survival period for one patient he was using as an example.

I need to get every member of this medical team in the room at the same time to address these issues together. I am rattled and confused by Dr. Naguszewski's diametically opposed view of Dad's prognosis; can every other doctor have been wrong? I also need to get a second opinion from someone in neurology who is not connected with Dr. Naguszewski.

The one question that hasn't been addressed at all is "What would Dad want?" I am willing to give Dr. Naguszewski a few days to see how Dad does with treatment--but he was never able to paint a picture of the sort of existence that Dad would have accepted were he in a position to say.

Until today, our path seemed clear and I felt comfortable that we were doing the right thing for Dad. Tonight, the path is murky and I fear we might make choices that Dad would never accept were he in a position to tell us again...