Sutton's Place

My husband used to joke about how he would prefer to die – after a martini, a great dinner with good friends and a fabulous bottle of wine, followed by a Cuban cigar, an Armagnac, passionate lovemaking and a deep sleep from which he would not wake up.

Well, he did all those things  –except the last! — many times: To my joy, he always woke up.

He was equally adamant about how he did not want to die and repeatedly said, “If I get Alzheimer’s take me out and shoot me”.

Well, he did get Alzheimer’s (AD) and I did not shoot him, nor did he shoot himself.  Had he known?  Here we come to the big ifs……If he had known, in time, would he have followed through on his determination to end his life, rather than suffer the indignities of Alzheimer’s?

It’s a rhetorical question because he did not know and neither did I.  Oh, looking back, in retrospect, I can see that the signs were there, but we missed them dismissed them as the result of hearing loss, information overload, stress, fatigue, or just getting older. That is one of the many problems of trying to diagnose AD early on – at its outset, it is an incremental disease, with symptoms that might be placed at many doors.  By the time we finally went to a neurologist my husband was no longer capable of making any decisions, let alone one to end his life.

We had both signed living wills and, with every medical advance, we amended them, becoming more and more specific about what we did not want to have done unto us. But the living will is an intellectual exercise, written, most often, when none of those things are imminent, suspected, or known. We were both healthy, strong, active, and we did not anticipate that anyone would have to act on those directives very soon.  And, although our living wills specified that in the event that we were experiencing a mental state from which there was no reasonable expectation of recovery, our lives should not be prolonged, there was no clause to deal with AD itself.  AD is not a disease that calls for life-sustaining treatments: there is no machine to turn off, no button that reads,  end indignity.

I did not only not shoot my husband but, given the opportunity to perhaps shorten his time, I could not do it.  He had a heart attack.  He was an elderly man, in the grips of Alzheimer’s, needing constant care.  An intervention made no sense. I had his health care proxy, and a copy of the directives in my hand.  But the cardiologist’s job is saving hearts. So many reasons were advanced to me as to why this intervention would be a good thing that I gave in to the pressure and permitted the surgery.

My guess is that added a year to my husband’s life, but it did not add any life to that year.  Quite the opposite – his last year was the worst.  Perhaps it would have been anyway –some things we cannot know and there is no point in my beating myself up about that decision.

As for my husband, when the brain no longer controlled his decisions, his body took over.  When the intellect goes, the body speaks. The brain demands quality of life.  The body does not care  about quality: it just wants to go on living, no matter what.  And so for seven years, we battled daily with AD, and there wasn’t a day that I didn’t think of how my husband had said he wanted to die and lament the reality.  I took solace in the sad knowledge that he did not seem to know what had happened to him. Those who loved him saw the loss of self, the erosion of the man we knew but, except on very rare occasions, he did not seem to mind. He was not in pain, he was well cared for, he seemed to be comfortable, even –so long as we kept to a rigid schedule –content.

If only.  Ah, the if onlys.  If only we had known, what would we have done?

I like to think that we were already living life as it should be lived — valuing what mattered, making sure those we love know they are loved, making the most of every day, appreciating the beauty of the woods, our garden, birdsong.  So: if only.

It is easy to rewrite the past,  but I think that had we known, we would have had one more magical moment with family and friends, a time  made richer by the knowledge of  what was ahead;  and then taken one last trip together, visiting old haunts, walking in our own footsteps, celebrating our love.

At the end of that trip,  I would have suggested that we move to Washington or Oregon where Death With Dignity Acts are in place, not only legal but, under the right circumstances,  accessible.  So we could go together.

Get out the violins.  That is a misty, gauze-covered view of what might have been.  Truth is, to exit life before AD takes over, one has to do it when one still has all his or her faculties, when life is still full of possibility, when days still bring  joy.  The temptation would be to be greedy, to take just one more day until suddenly, it’s too late, the decision is not yours to make any more.  This scenario also It leaves out all the messy stuff — the preparations, the consultations with family, the actual doing of the final act.  Which is why, perhaps, despite the access to a death with dignity, few  seem to actually take advantage of the law. In the fifteen years since the law was passed in Oregon, 935 people, citing decreasing ability to participate in activities that made life enjoyable, loss of autonomy, and loss of dignity as their reasons had Death With Dignity Act prescriptions issued by a doctor.  Of those, only 596  actually took the prescription. In Washington State 103 prescriptions were issued in one year; 70 actually took the medication.

The living will and the will to live : two concepts, apparently sometime at odds.