Tradition!

I pointed out the irony of our situation to my grief counselor this week: this Thanksgiving, the kick-off to the dreaded First Holiday Season PT, in a way will be easier than the last several. How does one reconcile that?

For most of my life, Thanksgiving was my favorite of the major holidays. I mean, what's not to like? It's cold out (mostly, okay sometimes) so you get to have a fire (sometimes you have to open a window or turn on the a/c, but...), it's centered around some of my favorite foods (mmmm, turkey) and you get to watch football all day. Growing up, the one thing I didn't like about it was the parade. Dad would drag me out of bed at some ungodly hour and make me watch the Macy's Day Parade with him. In some ways, he was like a little kid. He loved parades. I liked sleep more. But Mother would give me a glass of eggnog with nutmeg on top, and that would ease the pain. Then she would serve the same thing every year. Turkey, stuffing, crescent rolls and cranberry sauce that came straight out of the can and still had the indents of the can molded into it when she set it on the table. There was never a deviation to the routine. Maybe as I grew older I refused to get up to watch the parade, but the day was predictable and - well, the word that sprung to mind was "safe". I guess I mean that it could be counted on. Everyone knew their role and fulfilled it year after year. It had a lazy, relaxed feel to it. That is how traditions are built, I guess. We hold onto what makes us comfortable.

Now imagine how it is to be bulimic on a day like Thanksgiving. It is the furthest thing from safe that there is. The entire day is centered around food and lots of it. (Well, unless you're us, then it is equally centered around food and football.) Generally, it is not just a lot of food, but a lot of calorically dense food. I will never be able to look out on the world from my daughter's eyes, but I would imagine it's really tantamount to torture. The easy thing to do then, one would think, would be to downplay that aspect of the holiday. But, on the other side of the coin for us always was our family and almighty Tradition (imagine a little Fiddler on the Roof playing here). When things were still staged at Greg's parent's house, the menu was out of my hands. But, even once it shifted, and I hosted it every year, I felt as though I was between a rock and a hard place. Particularly with the two grandmothers, whose traditions were now being handed down. For them, it was important to see those traditions carried forward; certain favorite dishes, table linens they once had, even the timing of the day (to eat before the Cowboy game or after!). And, there were other family members who had no stake in either of these opposing positions, other than that they deserved to enjoy the tradition and pomp and circumstance of the day like a normal, American family (presuming there is such a thing). I never knew how to equitably balance all those things, and the holiday eroded for me long before this particular year. This year, the menu is not the worry. I get to make the mashed potato dish Greg's mom made. I already have Mother's cranberries for her. I'll make the pumpkin muffins I've made since I was first on my own. None of that will trigger Kelsey this year. I won't have to worry and fret every time she darts into the kitchen, or pushes back from the table and immediately goes down the hall. I won't have to worry about how hard it is for her just to get through this day that's supposed to be a happy one. I won't have to worry how it tears her sister up to watch her behavior. So, again, how am I supposed to feel about that? Well, this year, I feel completely lousy!

I would like to get it back some day, this formerly favorite day of the year. I wonder if that's possible. I just put eggnog on the grocery list. Who knows, maybe I'll even get up and watch the stupid parade in Dad's honor to begin re-establishing a long lost connection with it. I kind of doubt it, though. Sorry, Dad, maybe next year.

Now That's a First

If someone who had recently experienced a life altering trauma were to ask me to tell them one thing to expect Post-Trauma (or PT as I will call it), I would respond, "Everything will be completely different from here on in." I look at the world from different eyes now. I see things differently and react to things differently. Things even taste and smell a little differently. The best way I can describe it is that it is almost as though you woke up the next morning in an alternate universe where things are very subtly askew. But, in point of fact, it's you who is different. And, with your different self, you now experience everything as though you're experiencing it for the first time. Initially, those experiences tend to be all hard if not downright horrific, but as time wears on there are actually some small surprises that are actually pleasant, like the first time I genuinely laughed at something. I laughed, then caught what I was doing with a little shock. However, like little earthquakes, there are after shocks, and that first brief laugh carried a big after shock. The dip back down was fairly severe, as though I felt guilty for having a light moment and had to be self-punished for it. But, the next time it got a little easier, and I trust that the trend will continue until there finally comes a day when I feel no after shock at all. Or maybe I should say I hope that's the case.

At any rate, since everything is being done for the first time in this new PT world, I can't really say how I will react. I am completely unpredictable, even to myself. Being close to me must be quite the challenge these days, and for that I am sorry. I hope that I can at least re-learn about myself, but I think how I am right now is not how I will be once all of this has been processed and just becomes the scar I carry with me rather than the open wound, so there's no point in really getting to know myself too well at the moment because I am a work in progress. And, I'm not sure I would like what I saw right now anyway. Because, while I am a deep pool of patience for some things I might not have been before, I become highly agitated with other things that would not have even really caught my attention before. As an example, I waded in way too deep in a situation the other day where I wanted to impress something upon someone and they weren't getting my message, even though I felt I was being very direct. I, in the recent past, would have stepped quickly away, having said my piece and let the rest of the chips fall where they may. But, this time I didn't, nay couldn't, really do that. I kept engaging in the conversation, trying to make my point (which I never really did, by the way). Later, because I was very upset over the situation, I wondered why I became involved in the first place. I finally concluded that it was because I felt a particular life view I hold was important to impress on my friend (which is that sometimes you express regret even if you feel you have done nothing wrong simply because the other person is hurt or upset by your actions) because losing someone over something so easy to avoid is just plain tragic. Really, I wanted to save my non-recalcitrant friend from ever looking back on the situation with regret or a sense of loss. And, she hurt another friend, and that upset me as well. My passion about it completely caught me off guard. I had no idea I would feel that way. I think I felt I could avoid someone else having a loss, even if it was just the loss of a friendship. Silly maybe, but there it is. I think maybe I have to re-learn boundaries in this new world of mine as well.

However, I have run astray. The real point to all of this is I have to do everything I've been doing for years and years once more for the first time. I had the first time I went to the movies, the first wedding, the first funeral, the first concert, even the first time I went grocery shopping. Every little experience is now colored through a different lens. Some I have done often enough that a routine has formed once more, others are still a work in progress. I have pushed myself to keep getting back out there. I think of myself a bit like a TV detective trying to break down a door; I may get repelled back a few times, but I'll eventually break through, maybe a little battered and bruised from my trouble. Greg is more cautious about venturing back out into the world as much. I'm not sure which of us has the better plan. I may power my way back to some level of normalcy faster, but first I have to endure watching someone celebrate his 24th birthday and feel the ripples of emotion as a result that Greg has spared himself.

The big one I think everyone who has been through a life altering experience knows they will have to work through is that first holiday. Technically, for us, that came very quickly. July 4th was only a couple of weeks following Kelsey's death. And, it was odd and hard, I think we would all agree. We were completely out of sync with the rest of the world. While everyone was celebrating, we were still in deep shock. But, Independence Day is a low maintenance holiday for most of us. Maybe a picnic and some fireworks, but it's not the huge affair other holidays are. We got lobbed a softball for our fist PT holiday. Now we're expected to move on up to the Big Leagues. We are about to endure our first Holiday Season. And how, pray tell, are we to get through that?

Deja Vu

There is a familiar feel to where I am now in trying to understand what is happening to Mother. I am strongly reminded of the early days of coping with Kelsey's eating disorder. First, there came the denial. Not flat out, bald faced denial, but a more subtle "it can't be that bad really" kind of a denial, followed by the realization "no, it really is that bad" and then deciding I better figure out what I'm dealing with. And, like I found with my early forays into the world of eating disorders, people who are involved in Alzheimer's care are happy to answer my questions and there is material on the Internet, but I have to go and look for it. I, for instance, learned that delusions and hallucinations are common amongst late stage Alzheimer's patients from a pamphlet I downloaded. But, as I experienced nearly a decade ago, no one has stepped up front and center and offered to navigate me through the extremely murky waters I now find myself floundering in. Of course, who would do that exactly? Who would be so bold as to assume I need and want the help? Most of you may be thinking that I am a smart enough person, I should just do the homework to figure it out. The problem I have found in both cases is my research is hampered by my own ignorance of the situation. Sure, people may be willing to answer my questions, but do I know the right questions to ask? Do I even know the right term to Google to find the resources I need?

Not always, I have found. And, like before, I have initially done more things wrong that right. As an example, I have spent the last year working to correct Mother on some of her more outrageous statements. I let it go when she calls me my dog's name or thinks that plastic flowers are real, but I have corrected her on some of the things I found harder to live with. When she asks me where something is that she tells me she has been asking for, but in fact never has, I have been quick to try and correct her. When she accused me the other day of both lying and stealing, I reacted like I would if anyone else accused me of such egregious things; I defended my reputation. I'd like to think I did it calmly, using my therapy words and tone, but I corrected her nonetheless, or tried to. I realized I did it in part because she's the mother. The mother is supposed to be the wiser one, the one who loves and supports you and gives you sage advice. It's almost as though I reverted back to the old days with Kelsey when I wanted her and expected her to just snap out of it eventually. I guess I thought if I corrected Mother she'd think about it for a minute, realize her mistake with a "Oh yeah, that's right" and everything would be fine. Well, Kelsey didn't simply snap out of it. Mother never will, of course. She will only get progressively worse. What I ended up doing was aggravating both of us actually. And, I am learning, aggravating Mother only serves to escalate her psychosis, if that's even really the right word for it.

Oof, and the anger. Oh, the anger is very familiar. It may be misplaced, but that doesn't mean it doesn't hurt. As with a rebellious, scared teenage child, a failing, scared elder will lash out at the closest caregiver. I have been told that, and even though it helped to have someone say it to me, I recognized that is what is happening. I am the "safe" one, the one that will take it square on the chest and still keep coming back for more. Unfortunately, my chest is pretty bruised after nine years of this from my child and from the knowledge that I wasn't ultimately strong enough for her. I definitely am not sure I am strong enough for my own mother's volleys. But, well, I look around and there's no one else around. Greg helped out yesterday by making sure Mother had her TV on the right channel for the game, saving me from missing the start of it, but when it comes to the really tough stuff, that's not his problem. He's nursing his own bruised heart after all.

The one thing that is very different from before is there is no coming out of this one. I can rest a bit easier with the knowledge that, no matter what I do, Mother will never be cured. All I can do is try and make it easier on her and everyone else around her by not whipping her into a frenzy every time I see her.

I've wondered what the point is in making me relive all of these emotions and trials and tribulations again. Does the cosmos want to see if I learned anything from the first go round? Or is it just some sick twisted Karmic joke being played on me by some Raiders fan in the sky (surely one of them has made it up to heaven at some point)? Or is this just my turn and everyone will be tested at some point? Or, is it just random and this is just how my particular cookie crumbled, as Mother might have said way back in the day? I don't know anymore than I know why someone decided to allow the Browns to have a Monday night game. So, I'll worry over it some other day - it's time to turn this horrid excuse for a game off and get some sleep!

Life with Mother

I returned to Mother's side after my weekend away with a great deal of trepidation. What would I find? Would she accost me with some new accusation, rehash the last one like some interesting new twist on water torture, or would she have forgotten all about it? The one thing I didn't expect was that she would be lucid. While that is not a word I would use to describe her, she was contrite. She seemed genuinely sorry, as if she somehow knew something she had done or said had pushed me away. I felt even worse than I already felt, heavy guilt now mixing with my disappointments from the weekend. I brushed it all aside as my having been in Dallas, figuring it would harm nothing to have her believe I had been there for longer than a quick day. She even was aware that the company I work for maintains its head office there, so, careful not to lie, I just said casually that is correct, but I did meet Amy while there. (Obi Wan taught me well - and if you don't know what I mean by that, don't worry about it, it just means you're not a total nerd, unlike me.) I walked away from that visit wondering if her wild and crazy behavior the week before really did have more to do with her heart condition than her mental health. Because if her heart wasn't working correctly, I wondered, blood and oxygen surely wasn't getting all the way upstairs. Maybe, just maybe, with the new medication for her heart, she would be bearable again.

And maybe that was a contributing factor, but that new sweet Mom didn't last. She has swung back and forth like a pendulum all week. Even without a brain eating disease, this would have been a challenging week for her. Her sole remaining sibling is in rapidly failing health (a report I did not credit as real until a third party who happened to be in her room when the call came in verified it), she herself continues to have a rapid heart rate and now has developed pneumonia. The disease has taken full advantage of this to take her on a mental roller coaster ride. I actually saw her cry, I mean really cry, this week. She had cried in the hospital a couple of weeks ago, but she had been in a lot of pain mixing with her severe anxiety that day. Her crying jag this week was caused by nothing more than a bumpy ride in the facility van on the way back from a field trip. To put that in perspective, I've tried to think of the last time I saw my mother cry prior to these two recent events. If I give her credit for crying when my father died, which I actually do not have clear memory of her doing, it has been since January, 1992.

I have no doubt that her ancillary medical issues are escalating the Alzheimer's. But, Alzheimer's is, even by her medical team's admission, the primary culprit. It is a fatal disease. That actually does not frighten me, either for my mother, or for my own sake should I ever be unlucky enough to fall into its arms. Mother has lived with a fatal disease in Parkinson's for over two decades now. And, she's 91. The reality of her situation is that something sometime will be fatal. And, as near as I can tell, and from what I have researched, she is not in any pain as a direct result of the disease. If anything, it may be helping her deal with the general indignity of a body breaking down by simply making her unaware of the more unpleasant facts of her physical situation. There are moments where I think she knows something is amiss. She will make a statement meant to set the record straight about something to prove she is still in control of her facilities. I have heard her say that she knows the famous plastic orchid that we placed in her room is fake, only to proudly point out its new blooms to me the next day. She has introduced the nursing staff to my dog Cheyenne as a male, then she will tell them she knows Cheyenne is female. On Cheyenne's next visit, her name has been changed back to Hans or Shane, and she is once more firmly a male. But, in a way, those brief moments of clarity make the rest of it that much harder to endure.

I never know what is real and what isn't now. I don't know what to react to and what to write off as delusion. The head nurse at her nursing home suggests I look into everything rather than make a potentially harmful mistake of ignoring a legitimate complaint. She also suggested that I try to gauge the undercurrent of what drives the complaints and try to address that. As an example, she has repeatedly insisted that the nurses are on strike, which she wrinkles up her nose and denounces as being "disgusting!" Before I caught on, I would look out into the common rooms and notice more nurses than patients, most of them familiar faces, and wonder what in the world was happening. But, I was advised, maybe Mother feels she has not received enough attention that day and so the staff, to her mind, must be on strike. That's all well and good, but it's exhausting. I feel like Alice sliding down the rabbit hole.

The most frustrating part of the whole nasty mess is that she cannot be reasoned with, even when her behavior is detrimental to her own well being. Currently, that is manifesting itself by her refusing to stay on oxygen or to accept nebulizer treatments for the pneumonia. Confronted with her x-ray, which I was sure would sway her, she announced that the machine was outdated and the man who was operating it was an idiot.

Force her to accept treatment, you say? You quickly learn that the legal waters I am treading are murky at best. I do not have Medical Power of Attorney, but even if I did, unless Mother is completely incapacitated, she is in control of her own medical treatment. I cannot force her. Yet, when she pulls something brilliant like checking herself out of the hospital against medical advice, I am the one who has to drive her home. I have no say, in other words, but I have to be there to pick up the pieces.

All I can really say is: Alice, this ain't no Wonderland!

Cougar's Day Out

So, the next day I drove the roughly 200 miles to Dallas to see my favorite American Idol, David Cook. For you long time blog followers, you will likely recall me mentioning him before from time-to-time. My interest is not strictly limited to his musical abilities, I have to confess. (And, yes, I am old enough to be his mother.) So were half the women there. I am not alone in this particular semi-obsession. It's the eyes. He can use them like a weapon. If he leveled those milk chocolate eyes straight at me and asked anything of me - anything at all - I would surely give it to him. Greg is aware of this with no ensuing protests. He indulges it knowing that snowballs have a better chance in Hades than I do of ever having those eyes meeting mine.

I went by myself, but had plans to meet my niece there. Severely directionally challenged, I arrived absurdly early rather than risk not being able to find it. Arriving a little more than three hours before doors were to open, I noticed women were already in line. I meandered around the area a bit looking for something to occupy myself, but not finding much, I simply lined up with them. When you join a group that early, you are in with the more passionate fans. I kept my iPod on to amuse myself, but I could see and hear enough to know some of these women had seen him multiple times. They knew his band and spoke about them like they were all high school buddies. And the ages ran the gamut. From the barely teens to women who probably could be my mother. Of the smattering of men in the crowd whom I couldn't immediately label as gay, I noticed the steely look I see on men accompanying their girlfriends to romantic comedies at the movies. They know they have to do these types of things in order to be granted permission for poker nights or to be lucky in the bedroom, but it extracts a heavy toll on their manhood, so they set their jaws and keep their eyes on the ground and just suffer through. I was amused by all of this, but couldn't help but wonder what Kelsey would think of her mother standing there with all of these women, all trying to get a look at those lovely orbs and hear delicious deep voice.

Once my niece joined me, and they allowed us into the venue, she very expertly guided us to a spot a little stage left, second row back. And there we stood for another hour or so waiting for the first opening band, casually chatting with the women lucky enough to be leaning into the barricade in front of us. They spent the time swapping stories of their concert experiences. A girl my niece knows casually ended up behind me and joined in the conversation. Very quickly it became clear I was surrounded by concert junkies. The two women in front of me clearly would go to anything and everything, but the group as a whole followed the Idols around as a preferred listening experience. My niece, I already knew, was a big fan of the show and caught Kelly Clarkson whenever and where ever she can. She had already seen David Cook a couple of times as well. But, she didn't stop there. She also runs a pretty wide gamut, from country to punk. She announced this was her eighth concert of the year covering a tri-state area. I was doing a little running math in my head, and was flabbergasted at how any of these young girls could afford to do that. And, as they conversed away, each trying to out-do the other regarding the people they'd seen and the seats they had gotten and how much they knew about each artist, I watched them constantly fiddle with their iPhones. I seriously need some financial advice from these girls, I decided, because I can't afford either their lifestyle or their toys. I would have been highly, highly amused by all this but for the fact that my back was really beginning to protest standing for that many hours with no support. I am, I thought more than once that night, decidedly too old for this.

However, I made it, and both his opening bands were good and not bad to gaze upon in their own rights. They were engaging young men, clearly enjoying what they do. I ended up coming home with both of their cd's, and I will gladly see either band again. But, they weren't the show I came to see, and finally, more than five hours after I began standing around south downtown Dallas, my Idol came on stage. I caught myself audibly saying "Oh my God, there he is." when he walked on. I was like a teenager on her first date with the guy she's had a crush on all school year. And, I was not disappointed. Those eyes lose nothing in translation in real life. I already knew he wasn't particularly tall, and could use some work with a personal trainer, but he is, in my opinion, completely and utterly adorable. And an awesome showman. He fancies himself a rock star, as does his band. I was also amused by that. I think to a certain degree his status as American Idol, the pop music machine, must frustrate him, but if it does, he doesn't let his audience know. He chatted with them, he flirted with them, he tossed himself into them. He seemed genuinely excited by their adoration, and it is no doubt at all to me why some of these women border on stalking him. He seems like the guy next door who is really nice. He is a natural showman. I was happily distracted by my little voyeurisms. But then something happened.

He pauses the set and calls the band members for the two opening acts out on stage to announce that his bass player, a kid named Adam, would be turning 24 at midnight. I'm sure, if anyone would have looked at me at that moment, they would have seen the shock on my face. I felt my eyes go wide in order to take this kid in. He's cute in his own right, shaggy haired and thin. And, there he stood, my daughter's age and about to turn one year older. Of all the nights for me to be in the audience. But, I blinked once or twice and joined everyone else in singing Happy Birthday to him, all the while with him looking genuinely embarrassed and uncomfortable. I was shaken by the experience. There was this very young person I had seen on Saturday Night Live, in videos that I have on my iPod, a former lead singer of a reasonably known regional act, who I always assumed was a bit older, and then I was faced with the reality that, already fairly successful, he was about to hit a milestone my child won't have the chance to see. I don't resent him for working hard and making a semi-name for himself backing up the man who used to back him up (they were in same band in Tulsa, OK pre-Idol), but it was the reminder of my child not being there for any more birthdays that got to me. I sincerely hope this young man lives long and, as Spock would say, prospers, but I mourn the fact that my own flesh and blood will not.

I realize too that when things like that happen to me, those little shocking reminders, they wear me out. It's as if I become automatically ten years older with each small reminder. I must be two centuries old by now. As I climbed back in my car to drive home, I was exhausted. Granted, at almost the half century mark, I had stood without a break for nearly eight hours, but it was a deeper level of tired than that. The fact that I made it home without killing someone is a minor miracle. I actually drifted off twice, just briefly, on the long drive back. I won't put anyone at risk like that again, I can tell you. And what about my poor precious car?! I could have damaged her! I still feel a little jet lag from my "wild" weekend, and can barely keep my eyes open now.

A few days went by before I could really put my finger on why I continued to feel so drained and down. I knew I would have, as Sarah Palin might say, "gotcha" moments, but I was surprised when they reached out for me at events I thought would be safe havens, and I knew that was part of it. The disappointment I felt at having been reminded so fully of my loss when I wanted so badly to forget it just for a while was fairly intense, and the strain of it exhausted me. I realized I had been trying to push past the normal course of the grief. I was trying to circumvent it and fully rejoin the human race again while I had a free moment, and that idea rose up and bit me in the behind. The grief just will not be ignored. For now it is just a part of me, and I cannot leave it behind. I know that now. So, now, I have to learn to co-exist with it. I wonder if David Cook, who only a short time before me suffered his own catastrophic loss, would understand what I mean.

Getting Lost on the Way to the Short Cut

I learned something this weekend. I learned that there are no short cuts on the way out of grief. You just have to do the work, you just have to do the time.

This was my big weekend away. With Mother seemingly convinced I was both a liar and a thief, I decided I could skip visiting her for a couple of days to allow that thought some time to pass. I had a full agenda to fill all this free time. First there was the Pow-Wow. This is a time honored tradition for me actually. This was the 18th annual event in South Austin, all but four or five that I have attended. Originally sponsored by Native American parents of Austin students who wanted their children to understand their heritage, it has grown to an ambitious single day Inter-tribal event, the largest indoor Pow-Wow in the country. At first, I went with both the girls, then only with Marissa, then Marissa made sure she had a friend along and then, finally, I was on my own. But, I look forward to it anxiously every year. For me, there is something calming and cleansing about the experience. I call it getting centered. I recharge my battery by listening to the drums, the stories, watching the dancers, walking among the vendors, and eating fry bread. For the longest time, however, I watched the traditions play out with a tinge of bittersweet longing. The sense of belonging and family I would see amongst the dancers and their families was something I was both drawn to and jealous of. Finally, I reconciled myself to the fact that I was an outsider invited to look in once a year and learned to simply appreciate the invitation. Last year I snuck away from Mother's hospital room to grab a couple of birthday gifts, eat my piece of fry bread and catch just a couple of dances, only to find out a month later that someone had gone into Mother's room while I was gone and made $350.00 + worth of calls to India. This year, I was determined to allow myself as much time as I wanted, maybe all day, to soak in the atmosphere and watch the dancers. I have never had the luxury of staying all the way until the end of the competition, which wraps up at about 10 PM. This year, I thought, if I wanted to, I would. No one cared where I was or what I was doing. I was totally free.

But, I hadn't counted on a couple of things. First was the drive down there. Every year it has been held at an Austin Independent School District sporting facility called The Toney Burger Center located off Brodie Lane in far South Austin. Every year I have gotten lost on the way. Nowadays, I only become vaguely lost, taking a wrong exit or turn, quickly realizing my mistake, and finding the right way. This year was no different. I almost automatically took the exit that dumped me by Kelsey's old apartment. As I swung myself around, I passed the book store I had taken her to when we were looking for a planner to help her track her bills, and the restaurant where we ate lunch and the market she liked to shop at. This was her world. South Austin has a vibe to it that suited my daughter better than the staid, conservative bedroom community I raised her in. I felt her everywhere. I thought I could shake it off once I got into the facility. But, then came the Grand Entry. Generally my favorite part of the entire day, it is an awesome display of all the dancers accompanying a color guard into the arena to "open" the competition. Since this is more of an educational event, this Pow-Wow has three. As I watched the midday Grand Entry, they came to the traditional Memorial Song, and the Emcee asked the audience to remember those who were no longer in the arena or in the stands. I became so emotional, I drew looks from the audience around me, but I endured it. However, I found that sitting on the hard bleachers of the auditorium hurt my back, and I ended up leaving even before I usually do. I'm not sure what I felt as I left and drove back, once more, past the places Kelsey frequented, but it wasn't centered.

Not to fear, there was the David Cook concert the next day...

Control Issues

You would think that after having lost one of the two things most precious to me, not much would frighten me anymore. Well, there's still the loss of the other most precious thing (Marissa). And, the idea of a home invasion really freaks me out. Not that I'm that worried about it; I have eight good reasons not to be, but the idea of one is terrifying to consider. I worry about the Steelers every time they fly for an away game. (That's not as random as it might seem. Also a figure skating fan, I began following the sport right as the US team was rebuilding from losing their entire team in a plane crash. So, I worry a little. Things happen, give me a break.) I'm afraid of fire. House fires specifically. (I was at the vet the other day while a house was on fire a couple of streets away. Everyone else was going about their business as if nothing was happening. It was all I could do not to run screaming from the building.) And I'm afraid of Alzheimer's. It terrifies me. I'd rather have almost anything happen to me personally than to be diagnosed with Alzheimer's Disease. My theory about why it frightens me so badly is because I would lose control over my own thoughts and body. I grew up in a household with a military officer and a domineering woman who didn't like to be told what to do. Control is something I was practically bathed in. The idea of not having any over your very inner most thoughts and having it be your own body robbing you of it...well, I shudder to even consider it. And, it's not just a vague, "Oh, I'd really hate to have it" kind of fear, it's a lose sleep worrying about it kind of fear. I read once that people who have a hard time staying on task were more at risk for the disease than others, When we were moving into our first rent house as a young married couple, Greg's mom was helping unpack and said in exasperation at one point that I couldn't stick with any one task. I worried the rest of the day about whether or not meant that I was at risk for the disease. I was 24 at the time. So, I've worried over this for a while. Every time I can't remember a name or the character from a movie or why I went into this room or that one, that needling little voice will taunt me, "Maybe you're a prime candidate for Alzheimer's. Maybe you already have it!"

Well, Mother has been diagnosed with Alzheimer's. I'm face to face with my arch nemesis, and terrified to death of it. I lost my daughter to The Beast, my name for her eating disorder, and now Mother is in the throes of this horrible thing. Actually, I am learning, it is not a new thing for her. She is, as best as I can tell (no one has stopped long enough to really say) in the last stages of the disease. I read a pamphlet from the Alzheimer's Organization that breaks it down into seven stages, and I estimated she is firmly at stage 6.5. This is a new diagnosis for her, but it is not a new condition. Her nurse practitioner took some time with me the other day, which I really appreciated, and she was the one who laid it out the best of anyone so far. She explained that Mother, being a highly intelligent woman, had been able to mask it and compensate for it very well, but that she is in a very advanced stage of the disease. As a matter of fact, she told me, they are treating this as her primary condition. All other issues, including an alarmingly high heart rate, are secondary when they are determining her care. Which is why she is not in the hospital as I write this. Her heart condition warrants it, but it is so distressing to her that everyone - and I do mean everyone, me most of all - determined that trying to correct the heart rate by other means is best. What all this means, I realize now, is that she has probably been progressing with this for years. Everyone involved with her knew she had senior dementia, but several times Alzheimer's had been ruled out. So, how do they know the difference and what is the difference? From watching health care professionals work with her in the past, they ask her a series of questions to determine if she knows who she is, where she is and what is happening. She has always been able to answer them. I am learning this is not all that uncommon, it is not called out for what it is until it is fairly well advanced, because things begin to happen that are unmistakable. And, I can tell you, they are hard to accept as a relative, so I would imagine I'm not the only family member of an Alzheimer's patient who has tried to sweep what they are seeing under some mental rug and blame it on medications, exhaustion (on both parties part) or just simply "quirky old Grandma", but eventually it can't be denied anymore.

We began looking more closely when she randomly pulled all her cash out of her investment account. I was highly alarmed by that, as I've mentioned before. An evaluation was done at that point and the diagnosis came out of it. So, it's been a month or so since that label got placed on her, but I will readily confess that I wondered even then if it wasn't a convenient way for the doctors to give me what I needed to try and protect her from herself. However, some of the signs that they were right kept creeping up. She would tell me things that she seemed to believe wholeheartedly, but I could really find no evidence for. For instance, that the nurses at the nursing home were on strike and how "disgusting" that was. She would elaborate on how she had not been fed until 2:00 pm and there was no one to dress her. Yet, she seemed to be dressed and, as I would look out to the central room, there seemed to be lots of staff around, and regular, familiar faces, not temporary workers. Then there was the evening she told me a man who had worked the scene at the drug party where Kelsey was murdered had come and talked to her about it. I was horrified. I had to leave. I spoke to the psychologist who helped with her evaluation about it and he assured me nothing like that happened. Yet, this is what she tells everyone there, that my daughter was murdered at a wild drug party. I find that horribly hurtful, because to me it just indicates what she thinks of my daughter. This is how her mind worked around her death. I'm not sure why it matters really, but it does. But I still rationalized it somehow as that is how she is when she is tired. I just couldn't quite face it full on. Yesterday I had to. Because yesterday I realized she is highly delusional and is having hallucinations not just when she is tired, but on a regular basis. I had to meet her and the facility's driver at the cardiologist where she promptly accused me of lying to her about giving her her Medicare card (sort of a story in and of itself, but she had insisted on having it back, and I finally gave it to her after she yelled at me, but I had tucked it away in a strong box in her closet). She then said it was stolen, at which point I became alarmed because that card is her life blood, if she loses it a lot of really bad things could happen, which is why I didn't want her to have it. She said she had called Camp Mabry to get a new one, and I began to suspect that something wasn't quite right. Then she theorized I had stolen it. I explained I had put it in the strongbox, and she said I wasn't telling her the truth because she had someone bring her a chair and she had stood on it to look for the card and it was gone. I knew then none of this was true. She cannot stand, and she certainly cannot balance on a chair, and no one at Hearthstone is crazy enough to let her try. Yet she repeated these things over and over. She couldn't quite decide, it appeared, whether I was more of a liar of a thief, but I certainly was to blame.

Once we parted company, I had the nurse on duty go into her room and check. There was the card where I had left it. Mother's comment was that I must have snuck in her room and put it back. They made several copies of it, but Mother refused to let them secure the card. She has it with her right now. I doubt anyone is going to get it away from her at this point.

The other thing I am learning is that the primary caregiver, which is me in this case, is often the focal point for all the patient's anger and angst. I know now that this probably accounts for the explosion in 2007 over sending Marissa off, and to a large extent, I take comfort in that. Her reaction was less the real her than the disease, but the enormous heat of her hatred toward me yesterday was intense. And, here's the thing: there is no one else. I can't simply turn to a brother and say, "Okay, it's your turn for a while." or have one of us deal with her finances, and the other one her dirty laundry, and keep the peace that way. I have to do it all. I cannot separate myself from her as much as either of us may want that right about now. I know I beat this poor dead horse all the time, but I continually confronted with the reality of it.

I can tell you one thing, I am using this as an excuse for a full weekend off. I am about to head down to south Austin for the annual Inter-tribal Pow-Wow and then to Dallas tomorrow for David Cook. She is so angry with me for my supposed crime that she does not want my company, so I'm going to take what positive I can from that and have a weekend dedicated to myself for once. But, when I drag in from the 200 mile trip home tomorrow night, I will have to face this thing, this horrible awful thing that scares the pants off me once more.

More about it later - for now, I am off for some fry bread!