Mom & Me Four Archive

    I've lost my bravery.
    Now that I know this, I'm feeling better.
    Relieved.
    Later.

    I couldn't be happier. I've been experiencing some unusually high anxiety, I'm actually feeling it physically, which doesn't often happen and surprised me this evening, over the last few days, not in regards to caring for my mother, so much, as regarding circumstances surrounding our life, so I'm looking forward, more than usual, to a soothing blanket of white for a few days. Seems it should start, fitfully, I notice, having just checked the forecast, sometime tomorrow evening, make up its mind on Sunday, then settle in on Monday and Tuesday. Ahhh...
    I've been envying Seattle. I lived through one of those knock-down drag out years when I was there. Absolutely exhilarating.
    Maybe this is the beginning of our forecast wet winter. I hope so.
    One more errand run tomorrow morning and we'll be ready to be snowed in. I'm thinking we won't get as much as I'd like, but we'll get something, that's for sure, and, at any rate, I'll be reveling in the blocking of the light that's predicted. Finally.
    Let it snow, let it snow, let it snow.
    Later.

...the part our relatives and friends, especially those who have kept up with Mom and have known her for ages, will especially enjoy.
    Our conversation last night, mentioned in the immediately previous post, that took place after the Boston Legal episode, ranged further than the area I covered below. Although I don't remember how we got there, we also touched on the subject of the slow down that commonly accompanies aging; not just intellectual slowing, but physical, social, etc. After discussing objectively what this slow down involves, I asked Mom, "How do you feel about your slow down?"
    "Well," she said, leaning back into her rocker and projecting her thoughts onto the ceiling for further study, "I know it'll come. It does for everyone, eventually. I'm not afraid of it. I'm not looking forward to it, but I'll take it in stride. I'll probably be ready for it, then."
    My mind had to take a powder, here. "Oh," I said, catching up with her. "So, you're saying you haven't slowed down, yet."
    She gave me that sidelong glance that translates: "Don't play stupid with me, girl, I gave birth to you!" "Well, of course not," she fairly snorted. Her eyes narrowed. "Why? Are you slowing down? Are you having trouble keeping up with me?" I noted that she was teasing by only half.
    I laughed. "You know, Mom, maybe I have! Maybe you're going to have to slow down so I can keep up with you!"
    So, people, it's official. Regardless of what you think, regardless of how it appears, regardless of the obvious drivel I publish on these sites, my mother has not yet begun to slow down. So there. Don't listen to me, her daughter; my perceptions can't be trusted. After all, I'm beginning to slow down, you know.
    Later.

    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.

    As it turns out, regarding most aspects, I am. I'm having one huge related problem, though, through which I need to work and I'm not sure how to do it. The thought of having to approach this problem yet again, is making me so crazy I actually cried when I was contemplating it, last night.
    I ran across a great article at Medscape last night, The Last Hours of Living: Practical Advice for Clinicians. The link will take you to the outline of the article. You will need to register for Medscape usage if you want to access the entire article. If you're a caregiver to an Ancient or Infirm one and expect to be with that person for the rest of their life, it would be a good idea of you registered. It is a CME article, which means it is designed to help physicians prepare for regular certification exams, thus, my guess is that you need to register as a physician or other type of clinician. Don't freak. At the time I registered, official proof that you're a certified medical professional wasn't necessary, you just claimed it for yourself. I assume this continues to be true.
    The article contains information about the processes of "normal" death, both the "usual road" and the "difficult road". It lays out detailed descriptions of what the dying one goes through, how it looks to observers, what is happening internally, explains most of the medical terminology used to describe the processes, gives advice on procedures and treatments that will comfort the dying one and counsels medical professionals on how to react to the dying one and the dying one's caregivers, who are expected to be present during the process, as well as what attitudes to expect, negotiate and encourage in onlookers and in oneself as a medical professional. As well, it gives a great deal of miscellaneous information about the definition of "normal death", such as, for instance, that less than 10% of us die "unexpectedly". Most of us experience gradual deterioration leading up to the what the article calls "the active dying phase". It also cautions medical professionals that "there is no second chance to get it right."
    I had no problem with the detailed, illustrated (with videos, tables, graphs and pictures) article. As I read through it, though, I realized that it would, indeed, be a good idea for me to seek a PCP for Mom here in the Prescott area, since this is most likely where she will die. This is what caused my anxiety. It brought forward the overwhelmingly negative, frustrating experiences I've had since I naively realized that I needed to become my mother's medical advocate several years ago and timidly slipped, toes first, into the cold, turbulent waters of caregiver medical management.
    There are times, like last night, when I wish I had never thought to question how Medicine deals with my mother. It would have been so much easier if I'd simply backed off and and said, "Yes, yes, yes," to anything and everything Medicine wanted to believe about my mother and wanted to do to my mother. Of course, she'd probably be dead, now, but I doubt that I'd have any guilt over this, as, ignorance is bliss. As well, if she was still alive, we'd have a physician up here and I'd have copacetic relationships with all medical facilities and people with whom she came into contact. Of course, knowing my mother's attitude toward Medicine, she would have fought many of the treatments, procedures, diagnoses and prognoses like a she-demon, but Medicine and I would have chalked this up to her dementia and, one way or another, either by arguing her into compliance or legally overruling her through health care proxy, Medicine, and I as its accomplice, would be having our way with her. Any anxiety I would have experienced during the process of overruling her would quickly dissipate in the repeated Medical Mantra offered to me at every point along the way, "We know what's best."
    This isn't what happened, though. Now, I am caught naked in the the glare of my harrowing experiences of managing her medical experiences, which include several unsuccessful attempts to secure adequate, gentle, understanding, cooperative medical care for her in Prescott. I can clearly see that I need to reinitiate this process and I am so overwhelmed by the possibility that all I can do, at the moment, is shiver and wail, which I'm allowing to happen, in the hopes that I'll move through this phase with the optimistic fortitude to apply myself assiduously to what now needs to be done.
    As I've mentioned previously in both the journals and the essays compiled in this collection of sites, I never meant to be here. Going into this, my resolve was that I would leave Medicine to Medicine and simply be Mom's medical chauffeur. I didn't know much about Medicine and I didn't want to. Damn, my observant, analytical brain and my sympathetic heart, that I wasn't able to allow this to happen. Now, I see, we're in a hell of a fix, Mom and me, and I'm not sure how to ignore the awful taste Medicine has left at the back of my throat and negotiate a fresh, promising relationship.
    Despite my anxiety, and my discouragement, and my low hopes for the renewal of this process, I am, of course, determined to work my way through this dilemma. I know better, now, though, than to think that one's experience, at least in the Medical arena, mirrors one's expectations. I never, ever expected what we've been through. I never, ever could have. I've even, throughout the last several years of Medicine's increasing encroachment into my mother's life, tried to repeatedly (and unreasonably, considering our numerous, absurd experiences) reestablish guileless trust in Medicine. Almost all my attempts have been betrayed.
    Time to face it all once more.
    Shaking head. Closing eyes. Trying to swallow lump in throat. Sobbing under my breath.
    Time to awaken the Mom. I'll label this post...
    ...later.

...hmmm. How do I explain this? I've been having this, well, experience. It's only happened four times over the last two weeks; once in a store, once while watching a crowd scene in an old movie, once while talking to Mom and once while idly surfing the net, watching South African music videos. Without warning, something, a filter or something, I guess, falls away and I find myself looking at my surroundings, people, surfaces and objects, even the air, as though everything was made of Swarovski crystal. Although it is clearly an optical experience, it is also intellectual and emotional. When I was looking at my mother, for instance, it was as though I saw her as all her transitions, up to now, in a fullness I'd not previously experienced. With objects, surfaces and the air, it is as though I become acutely aware of their structure and the process through which they were made. It is an overwhelming experience, as well, and after the effect has left, as it does within minutes, although imperceptibly, I don't become aware that it's fading until it's gone, I find myself in tears.
    It's not at all scary. It feels quite comfortable. I'm equally comfortable when the perspective is gone. Although the reality around me seems heightened during these experiences, I don't. I'm not left with any perceptions, extraordinary or not, just this feeling that, for some moments I was, somehow, more present than usual, more aware than normal. I continue to operate normally while the state unfolds. The tears at the end are a quick gush and easy to disguise. My mother didn't even notice that I had teared up, and she's usually quick to point out my teary interludes because she finds them amusing. It hasn't changed my askew moods, either, nor rendered life easier, nor harder, nor caused me to be less or more susceptible to irritation or acceptance. The first experience surprised me and I wondered if it was an aberration caused by my concentration on the movie. The second told me that, no, it wasn't dependent on circumstance. The third and the fourth episodes made me realize that I will probably have more, although there appears to be nothing I can do to cause them, nor do I have any desire to do anything to retain the state while it is happening. On the one hand, I hesitate to consider them spiritual experiences because I'm noticing no change in my approach toward life. On the other, it's hard to classify them as anything, even hallucinations (and, believe me, I'm familiar with hallucinatory experiences). When they are taking place I feel the opposite of "removed"; actually, I feel more as though I've been "moved in". I do not, however, feel "removed" when the experience has receded.
    Anyway, it's a curious thing. I wanted to record the experiences somewhere, in case I've experienced the last of them, so that I'll remember, wonder about them later and, maybe, discover their generation. This seems as good a place to do it as any. And, at any rate, they seem somehow connected to the life I am, at the moment, leading, which is directly related to being my mother's companion.

    On a different track, I have a prediction. I predict that, when the holidays are over, the United States Economic Engine will find that people have spent substantially less, this year, during the holidays and many businesses will be surprised to find themselves scuffling on the other side of a black ledger. I've been astonished to notice, when running errands, lately, that, even though Prescott is never crowded with hoards of shoppers, even during the holidays, there is no discernible difference between the amount of shopping going on this year during the holidays and a normal day during any other time of year. I believe that this will be explained by the experts as "consumers" having a lowered level of "confidence" in "the economy", due to the real estate market, the political conflicts because of the war, etc., but I think something else is going on. I think, in a current deep, deep, deep beneath the surface, a sea change is taking place. I'm not sure what this bodes for future economic stability. I suspect, though, that, at least for awhile, perhaps some years, things will turn bleak and seem to get bleaker. I also think that a solution that has never been tried will have to be invented and engineered in order for, well, to put it conservatively, "confidence to return to the marketplace", although I think a radically modified marketplace will be the most insignificant of all the modifications about to be initiated. I'm excited about this, even though I suspect that we are about to enter some years of great fear, instability, even turmoil. I can't put my finger on why, but something is indicating to me that the United States and some other countries, as well, eventually all countries, are about to receive a startling, critical mass kick in the ass. I, further, think that social arrangements, including caregiving of all types, are going to change radically over the next decade or so, as a result. I think our current economic system is going to be blown apart. I'm pleased about this. I have been concerned that I was going to have to challenge the economic system all by myself but I think the trumpet has already sounded. What a relief!
    I can't wait to see whether I'm right and what kind of a world will come of it.
    Later.
    In recognition of a post I read and admired some hours ago at Fading From Memory, I hereby label this post: