Mom & Me Four Archive

    Lately, Mom and I have been working our way through the second (last year's) season of Boston Legal. Last night we encountered the episode Live Big, which I've previously mentioned in a post (linked to the name of the show) upon which I never elaborated. Although Mom's attention is always riveted when we're viewing any episode of this show, even though we'd already watched a couple of episodes previous to cuing up this one, her focus seemed particularly acute. It features a man who is being tried for murder after helping his wife, who suffered from Alzheimer's in what sounds like an advanced stage, die. Several aspects of this issue were featured, from a variety of angles.
    Admittedly, my mother's dementia does not seem to be taking what we all have agreed to recognize as the typical trajectory of Alzheimer's. In addition, her dementia has been labeled by Medicine as "vascular dementia", the trajectory for which is little addressed in the literature. Neither of us has any idea whether her dementia will ever close more tightly around her, nor, if it does, what will cause this to happen, since we've experienced episodes in which it seems to loosen its grip as other health issues are addressed. Considering the likelihood that, as she moves ever nearer to her death her physical health will decline, she probably will experience, at some point, stronger dementia, although what form it will take remains debatable. My mother's relationship with dementia has been nothing if not surprising. For both of us.
    One of the issues addressed was the horror that engulfs the demented during that stage when they are just beginning the journey of progressive dementia and realize what's happening. The episode made mention of the murder victim's actual horror and the imagined horror that Denny Crane's father probably experienced during this phase. As well, I am more than familiar with my mother's own past anxiety over the possibility of developing dementia as she watched her mother's journey through dementia, which was typical of what we've come to recognize as the Alzheimer's track. When her sister, much later in her life, fell (quite quickly) into dementia, my mother was beginning to experience mental sink holes. I was, by that time, her full time companion, had taken over all her personal business and had begun a light ordering of most of the rest her life and a heavy ordering of her medical experiences. She was in frequent contact with her sister while she lived at home and after she was moved to a nursing home, just as she was with her mother. During her sister's demential journey, though, my mother no longer expressed anxiety about her own demential possibilities.
    My mother's dementia has progressed since then, although still continuing its own meanderings. The Dead Zone has been added to her life. Her short and long term memory is decidedly looser than it was. All her anxiety about her own dementia evaporated a long time ago, though.
    As the Boston Legal episode ended and the credits rolled, I noticed that she remained focused on the screen as though she wanted yet another scene to unfold. "What's on your mind?" I asked.
    She hemmed and hawed, having trouble putting words to what she was feeling.
    I slowly back tracked through the episode and said, "Stop me when we get to the place you need to be."
    She understood what I meant. It was the scene in which Denny Crane describes his father, on the day he was euthanized, as having had a good day, his appetite was good and the word "blissful" could have been used, Denny admitted, to describe him.
    "That's it," my mother exclaimed. She continued, though, to have trouble articulating what she was thinking.
    "Let me take a stab at it, Mom. You tell me if I'm right or wrong." My mother remains astonishingly capable of knowing and expressing whether someone else is interpreting her thoughts correctly, so I didn't have any qualms about using this technique. "My guess," I suggested, "is that your experience with dementia has been a complete surprise to you."
    My mother smiled and nodded vigorously. She opened her mouth to say something but I jumped in. I wish, now, that I hadn't, as I would have liked to have heard her words, but I have this tendency, when I'm on a roll, to turn into somewhat of a verbal bulldozer. Got to watch that.
    "Would it be accurate to say," I continued, "that it's not as bad as you imagined before your mind began to take flight?"
    "Oh, yes," she said. "That's it."
    "Would you go so far as to say that while it would have been nice if your mind had remained predictable for you, the state of your mind, now, hasn't reduced the quality of your life and you have no complaints?"
    "Yes! Yes!" she confirmed, excitedly, I might add.
    "Are you concerned, now, that if your dementia progresses, people will misinterpret your experience and act on your behalf in ways that are more about their fears than your experience?"
    She sat back in her rocker with all the relaxation and gestures of someone who has been well understood. "That's it. What if I look like I'm uncomfortable, but I'm not? What if..." she worked to find the right words.
    "I know," I told her, "that you have a Living Will that precludes extraordinary life extending measures."
    "I do?" She was genuinely surprised, although not agitated about learning this.
    "Yes. It was drawn up twenty-one years ago, when you had no idea what lay in store for you. How do you feel about that, now?"
    "I'm not so sure, anymore," she said. "I don't think I want to be a vegetable, if that should happen, but I'm not sure what a human vegetable is, anymore."
    I've heard variations on this before from others, most recently during a program on PBS, Living Old. The link will take you to the interview with the woman who expressed one variation, which is almost at the bottom, in answer to the question, "Have you had conversations with your kids about a health care proxy?" I've been meaning to talk about this program, here, but haven't yet gotten around to it, chiefly because I'm still working my way through its extraordinary online coverage, which includes lots of extras.
    "Okay," I said. "I won't step in and and keep you from dying if and when I perceive that you want to die, but I'm not looking forward to that time, either. I'm also aware that there may come a time when I won't be very good at knowing what you want and what you don't want in this regard. I can tell you this, though: Mom, I will always, always, always want one more moment with you, one more hour, one more day, no matter what. I know this, now."
    She was listening carefully, nodding vigorously. She interrupted me and said, "That's how I felt about [her sister's name]. That's how I felt about Mother [her mother]."
    I took silent note that she wasn't in The Dead Zone as we talked. Interesting. "I'll err, then, on the side of life."
    "I don't want machines keeping me alive, if that's all I have left," she said.
    "I get that, Mom. I'll be careful, though, to go the distance with you, just in case."
    "Good, good."
    "It may get tricky. There may come a time when it's not as easy for me to interpret what you want as it is now."
    "I know. If you're not sure, don't do anything."
    "Sounds like a plan, Mom."
    We sat silently, for some moments, contemplating the DVD's floating "We're done here, what do you want to do now?" display.
    "I want more time with you, too," she said. "As much as I can get."
    That's when I cried, and she laughed. At me and my sorry, Dad oriented tear ducts.
    Then, I laughed.
    Thank the gods my mother remains capable of being amused by me, especially in my quick sentimentality and my overarching seriousness. This may be part of what keeps her going. Perhaps this curious yardstick will be the tool that will tell me what Time it is. Time for life. And Time for Death.
    Later.