I went to say goodbye to my stepdad yesterday. He is still alive, at least biologically; he’s moving into the deeper and final throes of Alzheimer’s disease. In years he is somewhere between 81 and 85, we’re not sure…he hasn’t been sure for years, even before the Alzheimer’s invaded.
A kind, sweet and gentle man who originally hailed from Vermont, he entered my life when I was five years old. He raised two other boys besides me, and despite the textbook issues we had and the grief I caused him as a petulant stepchild over the years, he always referred to me as his son and never showed any favoritism.
Fortunately, a few years ago, while he was still lucid I was able to write him a letter apologizing to him for giving him as much hassle as I did. He was gracious in that stoic Vermonter way, quite kind and understanding.
He could be said to have been an extroverted Vermonter, one looks at your shoes while he’s talking to you. He worked hard for his entire career as a newspaperman (not as a romantic reporter or executive-type); he worked in the machinery that actually got the paper onto the streets. He worked most of his career second shift and took on as much overtime as he could get. A twelve-hour workday was almost routine for him. He never complained and always at least modestly provided for us. When we kids were young, he made sure that my mom never had to go to work to assist in supporting the family. He never talked about it; he just did it.
We noticed him slipping a while ago, and over the years there has been a steady decline in his cognitive function. This Alzheimer’s is tricky…sometimes there are long periods of lucidity, awareness, and interaction. Then he fades away. The fading away has been more pronounced in recent years, and downright profound in the past several weeks.
A few years ago my mom and stepdad moved in with my brother’s family who had built an addition onto their home; an in-law apartment, ostensibly to help save on our parents’ expenses. But also to help care for my stepdad in his inevitable and continuing decline.
He has been steadily getting worse, and my mom and brother were dealing with what many caregivers do who had promised to be there for their loved ones in the end: grapple with the guilt over giving up when you can no longer give adequate and proper care to your family member. That fuzzy line where you objectively try to determine if you’re doing more harm than good to all parties…Objectively. Right. It’s easy to forestall that decision for as long as possible. Apparently, that threshold has been crossed.
Early last week they took my stepdad to the doctor for a look at his ankles. He’s been having problems with them for a while now. When the doctor saw his cognitive condition he insisted on holding my stepdad to determine if he needs full-time care. They found a bed for him at a local geriatric hospital, and my family was told it may be three or four weeks before they could make a determination.
This week the decision was made that he will not be coming home. My family is lining up a permanent residence for him for his final days.
We went and visited with him yesterday. After going through security and being buzzed into the ward, we found him standing outside his room, at the threshold of the doorway, watching the common area where other patients were interacting.
When he saw us enter, his face lit up like a bulb. He didn’t precisely know who we were, but he recognized our faces. We greeted and hugged. The first thing he said to me was, “are you taking me home?” My heart sank, I just looked at him and told him we couldn’t. He seemed to withdraw a bit and got very quiet. We attempted small talk…I immediately deflected the conversation to the medical state of his ankle, and how it was doing. Just got a terse, “fine.” Then we stood there at the doorway to his room, leaning against the walls, watching the ward like we were standing on any street corner, just hanging out.
There were times when we’d speak and times when we’d just be silent. Most of the times that he spoke he would point to his name written on a piece of tape stuck to the room placard and would spell out his name, pointing to each letter of his last name, then he said “comma, D. That stands for Duane. That’s me.” This occurred more than a half-dozen times in our short visit.
Things began to escalate with that theme, and it got to a point where he was not any longer reading his name. A couple of times he boldly stated his full name. And every time finished it with, “That’s me.”
I could not help but have the feeling that he was reaching up out of the well of a void he’s slipping into and desperately trying to keep a grasp on his identity. There’s something inside him that is fighting for that. Probably just the base individual instinct for survival of the self that we all have.
We did not want to agitate him any further, because he was reaching the point of more vociferous insistence as to his identity. We started recognizing how this was difficult for him. It was difficult for us too, but we said our goodbyes.
We hugged, we told him that we loved him, and I looked deep into his eyes. What I saw was a profound something that I’ve only seen on one other occasion in my life. I saw it in my own dad’s eyes the day before he passed away. I saw this again yesterday.
The simple way of describing how it appeared was reminiscent of a lyric from the Beatles song, Lucy in the Sky with Diamonds … “…with kaleidoscope eyes.” My stepdad had it, as did my father on his last day in 1990.
When you typically look in someone’s eyes, you perceive the light of their soul, a single light in most instances. That appearance was not evident in either of these gentlemen’s eyes, however; it was an unmistakable feeling that they weren’t there.
But the animus, the spark, the motive life force was in its place. Raw, unbounded. It was a part of him, yet a part of everything. He was and is a part of everything now. He was there, but he is simultaneously everywhere, as well.
I pray him peace and comfort at this hour as he dwindles into the twilight, with the comfort of knowing that we acknowledge, appreciate, and love the man whose name is Duane.