Friday, July 28, 2006

 

"When she was good, she was very, very good, and when she was bad, she was horrid."

    Mom just went to bed. Early, for her, especially for the last couple of weeks, since she's been arising at 1300 or later. It's typical for her to mention around this time, "I think I'll head for bed."
    In order to make sure she doesn't spend almost all day in bed, at this point I typically distract her with an alternate activity, or two, or sometimes three: Could be a conversation catalyzed by me questioning her about her past or her attitudes; maybe a round of Sorry (usually not Scrabble or Brain Age this late at night) with the Big Band cable music channel providing a bubbly ambiance; reading aloud; episodes of one of the television series we have on DVD; possibly a short, light movie, if I sense that she's far from being dead tired and I think she's got it in her; sometimes, so I can gauge if she simply needs to move a little or she's really to-bed-tired, I'll put her through a short round of her informal exercises. Always, well, almost always, as you'll see, before I allow her to head into the bathroom she gets her nightly leg rub down; if it isn't already on, I trigger the Big Band Channel; the combination of mental gaiety and physical repose can always be counted on to create a reverential alpha state that usually provokes "I wonder" conversations or silly, pleasant chatter between us.
    Sometime late this afternoon, though, I reached into my Caregiver box and came up empty handed. From that point on I hovered in a quiet background vigil, turned the television to TCM's Festival of Blondes, which I knew would hold her attention, made sure, in the manner of an aloof English valet, that she got her dinner, her pills, went to the bathroom on time; I performed some niggling, distance-producing chores like cleaning out the microwave (a piece of salmon exploded in it two days ago), finishing off the laundry and folding it in the utility closet instead of in the living room, anything that I thought would give me enough "space" to buck back up into a pleasant demeanor before her inevitable first attempt to go to bed, so I had the wherewithal to keep her up for awhile. Doing this seemed especially important tonight because, although she was awake by 1330, just about 12 hours, it took a half hour of coaxing to get her hand over the edge of the bed for BG measurement and bathing went so slowly that when I placed her breakfast in front of her I noticed it was almost 1500.
    At 2300 straight up, on the heels of an Andy Hardy movie, she said, "I think I'll head for bed."
    "Okay," I said. No argument. I didn't look at her. Peripherally I could see her head swivel in my direction expectantly. I knew she was wondering what little stay-awake tidbit I had up my sleeve tonight. When I didn't meet her gaze, she turned away and fingered the coffee cup on her dinner stand.
    "Have you finished it?" I asked.
    "Oh." She leaned over to look into the cup. "Yes."
    "I'll go ahead of you and turn on the lights. Your pajamas are in the bathroom hanging over the edge of the tub."
    There was a short but significant pause before she quietly said, "Okay."
    I stood and headed out of the room. Before we were able to meet in the hall, as we usually do, I was in the kitchen setting up the dishwasher.
    I waited for a minute then entered the bathroom and began helping her pull her knee brace, pants and underwear off, still refusing to meet her eye to eye.
    By this time she understood that I'd pulled a curtain between us. "I can do that," she said. She always says this when she understands that I'm distancing myself.
    "If I let you do this, I'll have to stand here and watch you to make sure you don't get tangled in your clothes and you'll be a lot slower about it than I am. I want to get to the point where I can pretend I'm alone in the house as quickly as possible, tonight."
    She stopped her attempt at self-maintenance and let me divest her of everything below the waist. I pasted her toothbrush, reminded her to brush her teeth "really, really good, longer than 30 seconds," and left the bathroom, telling her I'd meet her in the bedroom.
    When I arrived, she was seated on the bed groping for the oxygen cannula. She looked at me.
    I could tell she had something on her mind. Finally, I returned her look.
    "We forgot to rub down my legs."
    "No," I said, not roughly, just matter of factly, "I didn't forget. I can't touch anyone anymore tonight unless I have to. I'm caregiven out. I couldn't even pet the cats, tonight. [Which is true. When Mr. Man crawled up on my lap and rubbed his head against my hand, I moved my hand away and told him, "I can't pet anyone right now. I'm the one who needs to be petted tonight. You want to do that for me?" He slid off my lap.] I'm sorry. I know it's good for you. I just can't."
    "That's all right," Mom said. "We'll do it tomorrow."
    My eyes returned to their oblique study of the floor. I adjusted her cannula, administered the last of her pills and water, kissed her, murmured, "Good night, I'll see you tomorrow." I turned. Before I left the room I said over my shoulder, "I'll be up for awhile. You're going to bed earlier than usual, tonight. If you feel the urge to come out an hour or so from now and do some late night visiting, please stay in bed and read. I need to be as alone as I can, tonight."
    "Okay," she said.
    I've been fighting this caregiven-out feeling for a few more than a few days, now. I thought I'd won. I've pushed myself to interact with her on a cheery level; taken advantage of her heightened alertness to bolster both of us with riveting movies, both comedies and dramas. Wrapped myself in her world, even took an exhilarating stab at trying to explain one of its mysteries to her. I've worked hard at thinking positively, acting forthrightly. Realizing before I retired last night that today might be a particularly acute day, I pushed myself to arise very early and headed to the barber's for a haircut, then colored my hair, hoping that would allay some of my need for wrapping myself up in myself. It rained off and on today; I made sure I wandered our yard in it while she was napping, hoping it would wash away some of my need for strictly me time. While I was out there I even petitioned any passing gods for a small gift of peace and tolerance to keep me from treating my mother like an unwanted distraction.
    Now, I'm thinking, Wednesday birthday? Oh god, I don't think I have it in me to celebrate anyone, not even my mother.
    Sometimes, I can't hold it back any longer. Sometimes I've got to pull my need for isolation around me and hope for the best until I've absorbed it into me and can reach out, again.
    Sometimes, nothing works until I'm working, again.
    At these times I think, as I did today, "What would be the harm in putting her in a facility so I can have a few days off?" Then, I remember that today, during one of my bad days, even though I allowed her to steal a little more sleep than usual (which she'd probably steal in a facility without anyone batting an eye), she was well taken care of: She got all the liquid she needs so she won't become constipated; she got the sodium she needs (she's needed more than usual, lately, because she's been sweating from the heat); she received a skin stimulating bath; she was lotioned down in the morning so her skin won't dry out and start to crack; her underwear was changed in a timely manner so she won't get a rash; she ate well, if a little starchy (I only had the energy to throw a pot pie in the microwave for her dinner); she received all the meds and supplements she needs and none she doesn't, and everything was administered with thought and care; she spent no time wondering where she was and who the people were with whom she came into contact; most importantly, for half the day, anyway, she engaged in meaningful, if light, conversation with someone with whom she's bonded, allowing her to know she matters and for the other half of the day, even though I pulled away from her, I did it here, within earshot and eyeshot of her, so she was never "a stranger in a strange land" [Exodus 2:22], doubting whether she could count on random acts of kindness and community.
    This is why I say, even at my worst I take better care of her than anyone else could. And, of course, my worst never lasts forever; it usually begins to dissipate as soon as I give in to it. Chances are, sometime tomorrow I'll recover my ability to be close to her, again.
    Later.

 

"If I said I'd been sitting here for about 10 minutes, you'd say I was wrong."

    My mother was sitting on the toilet. I was standing in the door of the bathroom leaning against the frame.
    "No. I'd agree with you," I said.
    "But, earlier you said that I was wrong about being in Mt. Vernon (Iowa; where she went to college) not too long ago."
    "No, I said that the way I understand it, it's been 64 years since you've been in Mt. Vernon, since you graduated college in 1942, and you left soon after that. I also said that you're perceiving time differently, now, than me. I'd even go so far as to say that you're making time differently than me, now. Or, maybe, sometimes, you're not making it, anymore. Instead, you've graduated to the point where you can walk in and out of the factory whenever you feel like it. So, we're both right, within our separate contexts. Since I'm experiencing time as strictly linear, to me it's been 64 years since you were in Mt. Vernon. Before I was born. For you, though, with your expanded experience of time, when you woke up this evening it had been only, what, a year or so since you'd been there?"
    "Oh, I'd say, a couple of years."
    "Okay."
    "I still say, something's not right."
    "Well, what's not right is that you and I are in different time zones, now."
    "But, if you and I agree that I've been sitting here for 10 minutes, then we're not in different time zones."
    "Oh, yeah, you're right. I guess what it is, then, is that I'm still only in one time zone, the linear one that we all agree on shortly after we're born. You, though, are not only able to be in linear time, you can also can also experience time in different ways, and you can escape it, if you want. What I refer to as the past or present, which I still believe I cannot experience at the same 'time'," I stabbed mock quotes in the air with my fingers, "you have the ability to experience simultaneously."
    "What about the future?"
    "Well, I don't know. Can you also experience the future in the present?"
    She thought about this for a moment. "No, I don't think so."
    "Maybe," I suggested, "that's still to come."
    Mom awoke about forty-five minutes previous to the above conversation. As is fairly usual, now, when she awoke she wanted to know if I'd, "heard anything about [her younger maternal uncle] and [her maternal grandfather]."
    First I reviewed the death dates, contrasting those with where she and I are in linear time, now, 2006. Then I said, "You must have been visiting Mt. Vernon while you were sleeping."
    "No, she'd said, "but I was there not too long ago, and so were Grandpa and [younger maternal uncle], so I know they can't be dead."
    This paradox was troubling her more than usual yesterday evening, so, I decided, maybe this time we should talk it out while I attempt to explain her expanded conception of time versus my own severely restricted conception of it.
    There's a reason I felt nominally qualified to try this. Some years ago when living in Seattle I had what I suppose most people would consider an hallucinatory experience while I was driving to work one morning. Sitting at a frontage road stoplight, just previous to merging onto West Marginal Way, I shifted, without warning or premonition, to my side and watched myself manufacture time. I saw the "stuff" which we mold into time enter me at a downward angle, as though it was coming from "the sky", through my back, rearrange itself inside me, exit through my front and lay itself down before me path-like. No, I wasn't on drugs. At that time I didn't even take vitamin supplements. I hadn't altered my normal morning routine that day. The only related aspect of my life was that I'd been spending some months in deep thought, punctuated maybe once a week with deep discussion with a friend and considerably more often with deep reading of and listening to others from both spiritual and scientific perspectives, about what I can only describe as various life mysteries. One of those mysteries had not been the mystery of time. I had, though, been considering, for some years, the concept of systems, along with the idea that the system within which we live, while tightly knit, isn't the only system existent and, most likely, not the only one available to us. The revelation I had about the nature of time was a surprise but not, in retrospect, incomprehensible in context. Since I'd been a young teen I'd wrestled with my memory of time moving much more slowly when I was a good 10 years younger than it did "in the present". Instead of assuming this was a quirky and altogether incorrect perception, I'd approached it from the possibility that time does, indeed "move more slowly" for the young and quickens its pace as we age. Maybe, I considered, we exist out of time before we are born then learn how to make time once we are born, in order to bond with our species. The more facile we become at making time in accordance with the society we keep, the faster time moves for us.
    Since I've been living with my mother it has occurred to me that, at some point, we make time so fast that some of us shoot out of time and begin experiencing our lives as of a piece rather than in pieces. So, I figured, even though I continue to exist in linear time, maybe I have enough of an "understanding" of time and no-time that I can help my mother make sense of what seem to her like troubling disparities.
    "Try this, Mom, and see how it works for you," I'd said earlier, when she'd tried to insist that I was saying she was wrong about what she was remembering and I was telling her, "No, you're not wrong, we're just in different time zones, Mom. Consider all the moments of your life ingredients you've decided to use to bake a cake. Each ingredient is separate before you begin. They look different from one another, taste different, occupy different spaces. You mix them up, bake them, and when you pull the cake out, cut a slice and eat it, the ingredients that an hour ago you would have had to eat separately and at different times, you can now eat all at once. Does that help?"
    "No...not really."
    "Hmmm...well. I have a feeling that's the best I can do, since your experience of time is much fuller than mine."
    "Most people wouldn't say that."
    "Well, then, most people would be wrong. From my point of view, eating a piece of cake is much more interesting and certainly tastes better than eating a little flour, then some baking soda, then some salt, some baking powder, a bit of raw egg, a teaspoon of vanilla..."
    "...make that chocolate..."
    "...okay, unsweetened baking chocolate, some sugar and washing it all down with milk."
    As the conversation continued, her confusion wasn't allayed. Neither did my desire to clear it up for her succeed. I tried several methods to explain something I don't really understand myself. Finally, though, despite my failure, just before she went to the bathroom her brow began to smooth. She released some tension by joking, "Well, right at this point in time, I have to go to the bathroom. I hope you're with me, instead of being someplace else in time."
    "You bet, Mom. I'm with you. I'll go ahead and turn on the lights for you so we both arrive at the same place at the same time and can see each other there."
    We both chuckled.
    Once we were back in the living room, she said, "So, you're saying that I'm experiencing time differently than you. You haven't baked your cake, yet."
    "Well, yeah. I'm still stuck in one time experience, Mom. And, you know, now that I'm thinking of time experiences like baking a cake, I think you're the lucky one. You experience both the ingredients and the cake."
    "What difference does that make?"
    "I think that my insistence that the past is past and out of my experience means that there is sadness attached to memory for me, because I'm experiencing memory only as memory, as something gone, that I can't recapture in my present. You're experiencing memory as happening now, continuing to happen all around you, so the sadness factor evaporates. Not only that, but your memories have a substance that mine don't. Right now, I'm thinking, I can't wait until I get to where you are and I can experience anything and everything, at my leisure, right now."
    "Well," she said, "don't worry. You'll get there."
    "Should I try to hurry it?" I teased.
    "I wouldn't if I were you, but that's up to you."
    "Okay," I said, "maybe I'd better stay where I am in regard to time, since you and I still need me to walk the line. I'll bake my cake when you've eaten your way into the center of yours and all that exists for you is cake."
    "When I'm dead," she said, bluntly.
    That surprised me. I wasn't sure she'd get the metaphor. "Yeah," I said, then veered away from that discussion. "I'm awfully particular about cake, you know."
    "Speaking of cake," she said, "I think I'd like chocolate cake for my birthday tomorrow."
    I laughed. "Well, from my perspective, your birthday isn't happening until next Wednesday. I'm not ready for it. Do you suppose we could agree to walk the straight and narrow to it, so I have some time to put together a good birthday for you?"
    She breathed a mock sigh. "If you insist," she said. "In that case, I'm expecting a spectacular one. Cake, I mean."
    Luckily, we still have some frozen pieces of Mom's favored Costco chocolate cake, so I don't need to put that on my linear shopping list. Then again, what would be the harm in scouting out a different chocolate cake, just for the fun of tickling her time-out-of-time tummy?

Thursday, July 27, 2006

 

Response to first part of Bailey's comment to the immediately previous post:

    I'm not surprised by your amazement at the first conversation with my mother that I posted. There are days when memories of both conversations and others of their ilk amaze me. This, I think, is why I posted them. This is also why I call my mother's dementia, "Dementia-Lite" and why I hesitate to use, as Deb so aptly put it, "the A word" when I talk about my mother's dementia. My mother truly is unable to conduct the business of her life...and she truly does have sink holes in her memory. Yesterday, for instance, when she arose she asked me, yet again, where her sister's family was, each by name. Her sister and brother-in-law are long dead. Their two children are scattered. I reminded her of each of their dispositions, with details, while we were conducting the sitting down part of her bathing. Then, not 10 minutes later, as she was standing up facing away from me while I scrubbed her back, she said, "You haven't answered me about [sister, brother-in-law, niece and nephew]." So, I told her, yes, I did, just a few minutes ago, but I would tell her again as soon as she is face to face with me (she has a hearing problem). She is definitely demented to the point of not being able to conduct her own life business (thus, she is extremely vulnerable) and I don't dare let her answer the phone, as those with whom she speaks come away thinking she's not at all demented, but she doesn't remember, within in minutes after the conversation, even picking up the telephone! Another caregiver who cares for more deeply demented parents expressed doubt that what I write is true. Sometime last week, in fact, I wrote an e to Deb telling her that, well, here, I'll quote myself, because you are mentioned:
    One of my learning curves over the past month as I've become acquainted with other caregivers to the Ancient demented is how easy I have it in regards to my mother's dementia. Although I know better, I occasionally feel guilty that I appear to make a big deal, by my obsessive reporting in my journals, out of taking care of my mother when it has become obvious to me that my story has a much easier trajectory and will most likely have a much easier climax and denoument than the stories of most caregivers to the demented. And, yet, I continue to report. Obsessively.
    The truth is, I believe that [Deb's story], Paula's story, Bailey's story, Mona's story, Patricia's story, Karma's story, are all typical of the Caregiver to An Ancient Demented One story and are much more useful and valuable than mine. Not that I believe there aren't others who are following the same path as my mother's and mine. Our Fed-Ex lady and her husband are taking care, in home, of her in-laws, both of whom have Dementia-Lite and other old age infirmities much like my mother. The Chandler friend/family who visits and took care of her father in-home up to his death also has a story similar to mine and my mother's. However, I understand, without apology, that our stories aren't the urgent ones, at this time. They do not contain the level of caregiver and care recipient angst with which the more common Caregiver stories are fraught.
    This is also one of the reasons I found the support group I joined not adequate to my needs (aside from the major reason that I don't function well in support groups because I am, fundamentally, a very contented extreme loner). I attended for, oh, I guess about five weeks. Week after week, as the participants (which included folks dealing with relatives disabled by schizophrenia and bipolar disorder, but mostly comprised caregivers to those with Alzhemier's and other age related diseases/disabilities) passed the "talking stone", each member would tell some incredibly frustrating, heartbreaking story about a caregiving incident in their lives. The stone would be passed to my hands and I would have nothing tragic to report and my frustration level was, at that time, anyway, obviously not nearly as high as that of the other members. That was the first time I got the sense that others believed I had "nothing to complain about" or that I was glamorizing my experience, not facing it. As well, the advice and support offered was not only not helpful to me but there was a lot of response to me along the lines of, "Well, keep your senses tuned, dear, one of these days your mom is going to be as bad as my [care recipient]", which is the argument the facilitator gave me for continuining with the group when I let her know I'd no longer be attending. Too, I found that I was dispensing lots of sympathy and compassion and not getting any, for which I didn't blame the group. How, when one is dealing with the deeper levels of demential disability, does one "sympathize" with someone whose mother continues to display wry, to the point humor, remains animated and engaged with her environment (even when she is mistaken about the details of that environment) and does not appear to have lost either her sense of herself or her sense of others, despite the fact that she absolutely needs someone to run her life, to the smallest points of reminding her to drink liquids and go to the bathroom in a timely manner? It's been eight years since I attended that group. I would venture to say that I would continue to find myself the odd man out. The Director of the Adult Day Care Center Mom and I visited even remarked that my mother is "much more high functioning" than any of the other adults to whom the Center caters. I had to agree, she is.
    The thing is, while Old Age is fundamentally egalitarian, it is absolutely not egalitarian in the detail. I have no idea why my mother is still my mother despite her dementia, when so many others lose their parents long before those parents die. Neither does Medicine. I don't know why my mother can stand to irony, cynicism and absurdity when she cannot be trusted to pay her bills, handle a household maintenance issue, change her clothes, bathe herself in a timely manner, take her medication, feed herself properly, etc. I don't know why she enthusiastically plays Brain Age (although she plays it "wrong") but can't remember how to use a microwave, a stove, a computer, a toaster, a remote control or an automobile. Neither does Medicine. So, I don't worry about "reasons" and I ignore all professional prophecies unless they appear to apply to my mother, as did The Wondrous FNP's summation and prophecy [detailed here and here]. I just keep her path clear, give her my full support (physical, intellectual and spiritual) as she walks it, commune with her, protect her and enjoy her while I can. And, I tell our story, unlikely as it may seem. I'm usually too busy keeping an eye on my mother as she negotiates the spaces between her bedroom, the bathroom, her rocker and the dinette table and making sure she doesn't lose her sense of family, which has always been of utmost importance to her, to worry about how unlikely it seems.
    And, as are you, I'm continually amazed by it.

Wednesday, July 26, 2006

 

Recent conversational bits that continue in auto-replay...

...through my mind's personal podcast (in no particular order):

Monday, July 24, 2006

 

We've been working up to this for the past few days.

    Day by day I've managed to put it off, but it looks like I can't, today: A Sleep Day. When I awoke my mother at 1300 she resisted as though she was being led to the gallows. I finally got her up and into the bathroom at almost 1330. When I brought in the "instruments of torture", she announced that I wouldn't be needing those, she was going back to bed. My normal argument is that she can't go back to a wet bed with in wet pajamas. Today I didn't have it in me to argue any further. I stripped her bed, wiped it down with alcohol (which dries fast), changed out her bedsheets (which may mean I'll be doing two loads of wash today), made her drink 12 oz of water, lightly cleaned her torso, changed out her pajamas, directed her to sit back on the toilet twice, first because her bed wasn't ready and second because I insisted on the light wash, through which she grumbled, and, now, she's back in bed. I'll check on her at 1500. I didn't give her any pills. I don't imagine she needs any, at the moment.
    Think I'll catch up over at The Dailies. For some reason I'm unusually anxious about letting her sleep in, today, but I can't seem to prevent it. Over the last few days she's resisted awakening but once I've gotten her up, bathed, pilled and fed she's not been interested in going back to bed, except, of course, for her usual naps, which have been short, lately, as well. Despite my mother's professed love of heat, these last days have been hard on her, even though our house is relatively cool. Could be the humidity (through which I've had her on oxygen when sitting up over the last few days because her bronchial tubes stuff up considerably in this kind of weather) combined with the volatile atmospheric pressure. I don't think it's anything indigenous to her body. Oh well.
    Later.

 

I now know far more about the six Brady children...

...than I believe it is legally allowed to know.
    As well, though, I also learned that my mother and her family teased her older-by-two-years brother relentlessly when is voice was changing and that my mother's sister always had a thing for musicians. According to my mother, her sister may have mistaken her choice of a husband for a musician because he played drums in a band. "She probably should have noticed that the Navy didn't hire him as a drummer," my mother said. The Navy, in fact, assigned him to cooking (my mother didn't remember this, I did).
    Interesting comment, considering what I know of my aunt's marriage.
    Later.

Sunday, July 23, 2006

 

Just a quickie to note that...

...my mother was not up to Denny's yesterday. Her back continued to bother her and she was not interested in using the walker, remembering that her usage of it tends to aggravate the condition. I'll be so glad when the monsoon (to which I always look forward and usually enjoy) is over. The atmospheric volatility has been particularly acute, this year, and just won't leave my mother's arthritis alone.
    We spent the day doing her hair a couple of times while I tried to figure out exactly how I'd successfully installed the tiara a few months ago. I came to the conclusion that the mysterious rim material actually does stretch. We'll definitely be going to the wig shop to find a better one and have it fitted to her.
    She also noted, while I was surfing for old movies, that one of the cable channels was sponsoring a "Brady Bunch Festival". I had no idea she even remembered this show. I don't remember watching it at the time it originally aired. My "Brady Memorabilia" comes from, well, Brady Memorabilia. I note, with relief and chagrin, that the channel (which was up when I turned on the TV this morning to check the weather forecast) continues the festival today. If my mother remains disinterested in Dinner at Denny's (why she loves this restaurant, I can only guess; she's always been a fan of low budget family restaurants, though; maybe it's that she loves watching families in action and Denny's always seems to host a particularly rambunctious bunch of families), which is likely, I attempted to rouse her at noon, her 12-hour-mark, even reminded her of our Denny's date; she wasn't having any and asked for "another hour"; at least she'll be well entertained. Anyway, I love the conversations we have sparked by these family comedy dramas...always about memories of our own family when we were kids, or her family when she was a kid, or speculations on what it would have been like if she'd had the "dozen" she would like to have had.
    Life With Temporarily Outside Directed Cats has settled down quite a bit. I'm going through a nominally low period but it's not worth talking about as I'm handling it well. Just one of those normal blips, probably aggravated by the weather: Brain arthritis, I guess.
    Eight minutes to Second Ascension Attempt.
    Later.

All material copyright at time of posting by Gail Rae Hudson

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