Consensus

Today my father was released from the hospital. He is going back to the Alzheimer’s wing of the assisted living facility Fox Hollow, but during the course of the past few days his life has been changed.

Last week, he was doing well adjusting to life in the Memory Unit, and seemed to be better off than he was even at home. After suffering a few successive falls in his room, though, he wound up in the hospital with an IV in his arm for dehydration. When he left this week, returning to his “home” at Fox Hollow, he had been taken off a number of medications, including insulin, and hospice care was arranged to begin immediately. This change in his care was not an easy decision for his family, my mother, siblings, and me, but this point in his steady demise from Alzheimer’s was inevitable. What caught us off guard was the rapidity with which we reached this point.

Alzheimer’s is essentially a terminal illness. There is no stopping it. It can be slowed and ameliorated, but, unless something else kills you first, it will drop your mental activities to something resembling the status of “brain dead.” To most people, this is the end of life, whether your body is still ticking or not. “Brain dead” means your brain stem, responsible for the most basic of your bodily functions, is not functioning properly – often it fails to regulates breathing, the lungs stop working, and the brain then dies from lack of oxygen. Brain dead refers to irreparable damage to the brain. Alzheimer’s also causes irreparable damage, but it accrues gradually.

Contrasted to brain dead is being in a vegetative state. A vegetative state is an ongoing lack of response to stimuli, although the person might have his eyes open (as opposed to a coma, where the person’s eyes are closed). This state might be temporary for some, but for an Alzheimer’s patient, it can be expected to be permanent. Many times my father told us he did not wish to continue living as a “vegetable.”

Which brings me back to my family’s decision this past week. Despite the reassuring way in which he settled in to life in the Memory Unit, Dad is going downhill fast. His doctors have aggressively tried to mitigate the onslaught of the disease, but his Alzheimer’s has progressed more rapidly than we ever expected. Whenever I discussed his condition with professionals in the health care industry, their initial comment was typically “he’s so young” (he is now 77). Certainly, to me, the difference in his health over the past 15 months, since my return to the US, is staggering, and heartbreaking. The doctors assure us he will continue to decline at this pace.

The option our family chose for my father was to cut back on the medications he was receiving that dealt with his long term ailments. Doing this would bring his body in line with his brain – in other words, he could be expected to deteriorate physically as his brain function receded. This will supposedly result in his death sooner than is medically possible, but before he becomes brain dead, or, hopefully, before he becomes, in his word, a “vegetable.” This decision is completely aligned with all guidance my father provided us when he was able to do so coherently, and with what we believe is in his best interest.

So how do I feel about saying yes, let us hasten the death of our father? Perplexed, at one level, that this juncture came so soon, but relieved, on another level, that I can foresee an end to his pain. Sometimes, when I speak with my father, I can see the confusion and frustration in his face as he struggles to make coherent conversation. Some days he does well, and I can follow what his mind is trying to convey. Other days, not so much. But always I am thinking about the mental capacity he once had, and what a major part that played in his life. I know he is too. Although he puts a brave face on it (lately decrying the driving statutes in NC and scheming to rewrite them), this is depressing for him.

On his good days, I have to second-guess our decision to “let him go.” But the good days are numbered, according to the medical professionals, and we need to enjoy them while we can, because, despite our fervent hopes or prayers, Dad’s mental faculties will continue to deteriorate until his personality, the man we have known for our entire lives, is gone. And then confusion reigns. And death is not unwelcome.