Monday, December 28, 2009

Where Do We Go From Here?

The holidays behind us (New Year's doesn't really count, it's always been a day to sit around and watch lots of football and not much more), my finances in a shambles thanks to a combination of five months out of work and six months of self indulgent activities meant to distract me, football season drawing to a close (it will take a fairly major miracle to extend the Steelers season past next week), we finally come to it: what in the hell are we supposed to do with ourselves now? How do we make sense of all of this? Or do we? Is there a meaning to what happened, or is just a random act in our random lives? If we find some meaning out of what happened to our daughter, does that matter to anyone outside of our family? And, if not, then what is the point? If I personally learn some lesson from all of this, what difference does it make? My other daughter seems to be on the right road (thank God), so one child gone, and one moving on with her own life, does finding the answers to any of these questions even matter? How do I carry on? I look at my mother and know that I do not want to be in her shoes (or slippers, as the case may be) someday. I don't want Marissa worrying about whether I need my adult diaper changed. So, how do I find a reason to carry on past my obligation to tend to Mother's affairs? Do I have anything at all to offer humanity having failed at the most sacred of obligations?

I realized that I was distracted by first the initial shock of our loss and then by the impending horror of that first holiday and had never stopped to consider what came after. Which is, simply, the rest of our lives. I mean, I did to some extent initially, as I gazed across the street at my neighbors who lost their son all those Decembers ago, but not in a concrete, now I have to start dealing with it kind of way. Now I have to deal with it. I feel a little lost actually. There is the art auction in February that will feature Kelsey's art designed to raise funds for an eating disorder awareness group. That will be good, and I am glad to be involved with it. My desire is to create a network for parents who ever find themselves where we did nine years ago. Scared, confused and feeling alone. But, past that involvement, is there really a reason for us to have gone through all of this?

I may be freaking some people out right about now. I don't mean to sound quite as fatalistic as I probably do, but all of a sudden these questions have risen up and shown themselves to me. I no longer have an excuse to avoid considering them. Think of it as the age old meaning of life debate. Do we have a purpose on this earth, or is our existence just a meaningless blip in the onslaught of time? That kind of thing. I would kind of like to have the answers handed to me, but I have a feeling I'll have to do a little more work to get them than that.

The good news is that American Idol starts back up pretty soon. That should prove a bit of a distraction from contemplating the meaning of life.

Sunday, December 27, 2009

A Christmas Story

All along I have had this odd sensation, as though I have somehow landed in a parallel universe where things seem primarily the same, yet off just enough to make you suspicious that you're not where you're really supposed to be. That's the best way I can describe it. Everything has been cloaked in a vague sense of the unreal. While I no longer have the overwhelming sensation that this isn't really happening, and that I will wake up at some point soon, I know it's happening, I just can't quite believe it. Given that, when I sat down to reflect on Christmas Day, it was no particular surprise that I went through it almost as though I were having an out of body experience. I wasn't floating above my body watching the scene or any scenario like that, but it was almost as though someone was running me from a remote. I was going through all the motions, but was never quite all in the present. I am fairly certain this sensation was a sub-conscious protective move on my part. Not that we were under attack from Greg's family, but we were likely to be hit by the tidal wave of memories I wrote about yesterday. I wasn't sure how we would hold up in the wake of it, so I can only suppose that my inner mind took over and handled things for me. While it worked by keeping me buffered from the onslaught of the day, it also kept me apart from any real enjoyment the day might have yielded as well. I know I smiled and joked along the way, and those were sincere reactions, but they still seemed to be reactions that were having to be dialed in from somewhere else. And really, it's sort of too bad that it had to be that way because it likely would have been one of the most pleasant holidays I had experienced as an adult. As I suspected, without the presence of The Beast, things were more relaxed. Greg's sister Cathy and her daughter drove down from Ft. Worth to join his mother, brother and my mother as our guests for the day. The Veldman siblings played board games, bringing back a long lost tradition, while my mother sat fairly docilely and watched, only bringing up money issues early in the day.

As an aside, Mother's stamina was amazing, and actually posed the largest problem of the day, in that we didn't anticipate she would want or be able to stay the entire day, so we weren't properly supplied. Putting is as delicately as possible, someone in Mother's condition who is going to be away from home base for any length of time needs what is tantamount to an infant's diaper bag. We failed to bring a change of briefs or clothes, both of which she needed by the end of the day, but she seemed unaware and fairly content. Hopefully, in the larger scheme of things, that's all that matters.

Yet, through everything, I felt like the real me was somewhere offsite and dialing it in. It was most noticeable when I was playing games. Trying to shake that remote feeling and concentrate on the strategy of the game was a feat to say the least. I managed it, even winning the second round of Scrabble, but it was then that I really knew something was afoot.

I wonder if what I experienced is typical for people in my situation. Do survivors of a trauma get through it by using similar self preservation tactics? I don't know, but am interested to research it and find out. While effective on the one hand, it did seem to slow my reaction time down - it took some time to get the instructions down the pipeline after all - so I could see that being an issue. Of course, I wasn't being chased by Nazis or locked in a Gulag, so speed was not of the essence. However, there was still an emotional toll to be paid. And now, in the waning hours of the holiday weekend, I am drained and exhausted. I suppose I need to go back to work just to get some rest. I literally have nodded off three times just writing this. It's funny how the human body and mind work. I'm too tired to delve into that any deeper than that.

Saturday, December 26, 2009

Ghosts of Christmas Past

At long last we came to it. The day we had been dreading for weeks. Christmas. On the one hand, I wonder why this particular day was so much harder than all the others we have spent since June? This was no different in that we woke up in the morning to a house void of one of our daughters. Everyday we are subject to being assailed by memories of our daughter when she was young, healthy and seemingly happy. Everyday we are subject to the memories of times when she wasn't healthy and happy. She wasn't here the day before, she won't be here the day after. Yet, it seemed to be a huge mountain to climb that at times we didn't think we could. As testament to the anxiety it was causing, my left eye had twitched off and on, mostly on, since Thanksgiving. Oddly, in Pittsburgh it stopped until the Pens game (my last night there), then it resumed. When we landed back in Austin, both eyes started twitching. I don't know if casual observers over the last few weeks could tell how tense I was, but that was my physical tell.

The thing that sets Christmas apart from all the other lousy days is that it's set up to be the ultimate family day. Whether you like your family or don't, there is an expectation that you have to come through and spend some time in one another's company. So, without a key member of that family, the day feels wrong. Of course, with all of us together in years past, there are a lot of wrongness. I have always been leery of forcing a divergent group of people together and then putting pressure on them to all get along and have fun. Kelsey had her anti-holiday moments over the years. She loved her family, that wasn't the problem. She loved her cousins in particular, but she was so self conscious she occasionally felt judged by them. Comments that meant nothing other than some casual observations would send her off in a crying jag. That wasn't anyone's fault particularly. We lived with her disease and still managed to say and do the wrong things all the time. So, people who were exposed to it only three or four times a year were almost certain to step into the muck The Beast trailed in its wake. On the other hand, she had been known to paint the bulls-eye that was on her own back, like the year she was two plus hours late for Christmas morning when her Ft. Worth family members had to be back on the road later in the day for work. Then, of course, there is the food aspect of the holiday. Like probably most American families, the holiday season for us centers around traditions that center around food. I've written about that before. The difference for our family at Christmas as opposed to Thanksgiving is that the formal meal is on Christmas Eve. Christmas Day begins around a breakfast and a casual midday meal. But, in both cases, the food is rich and highly caloric. And for someone like Kelsey, very threatening. And, the tradition of having lots of grab and go snack items between those two meals doesn't help. These are the triggers it's hard to understand if you're not in her shoes. So, as I have mentioned before, there is the conundrum of whether you try and protect her from them, or do you go with the majority rules concept and let everyone have their holiday feast? I never knew the right answer. What I did know was that The Beast caused a level of tension that I know everyone felt, even if they didn't understand it. Without Kelsey, there is no Beast; therefore, as with Thanksgiving, there are some things about the present situation that are easier. That reality just makes it all the more awful actually. There is a lot of guilt that is brought to bear when planning events now. It's so much simpler, but I'd rather have my daughter than the simplicity.

However, I think the biggest hit for me is the memories of holidays past. Not the recent ones, where there was worry and dysfunction (well, there's always a little of that in any family), but the ones when the girls were small and asked for Barbies and Beanie Babies, and loved pretty much anything we got them in addition to that. The memories of the times when hope sprang eternal. I looked into my daughter's bright, shining face as she played with her new things in her holiday dress and saw endless possibilities there. What would she be when she grew up? She was bright and empathetic with a stunning talent as an artist. She could have been anything. Those memories are all wrapped up in the season. Yet, the really hard part is the idea that there will be no new memories. What I have now is all I will ever have. That and the thought that her last holidays were hard ones. That somehow we couldn't make it better for her. Those things were the kill shots for me.

No one can prepare you for how hard that first holiday season will be. Even those who have survived their own. It's too personal an experience. All they can tell you is that it will be hard. From there, it will be unique to you. So, how was it? I'll tell you about it in my next post.

Tuesday, December 22, 2009

What the City of Steel Taught Me

The last time I spent any significant time in Pittsburgh I thought I was connected to it by biology. Now I know that's not true, but I still feel connected to it by temperament. It seems to be a bit like me. Getting old in sections, with an odd blend of intellect and blue collar crudity. It doesn't quite know what it wants to be. Is it the Steel City, or a center of academia, housing Carnegie-Mellon University, Duquesne, and Pitt? There are more high quality museums of all flavors in this city of less than 320,000 than in Austin, home of the University of Texas and a population of over 650,000. As my guides over the last few days explained, the city is so well endowed because of the two titans of industry, Andrew Carnegie and Henry Clay Frick. But, the city itself was built on the sweat equity of pieorgie eating, beer drinking, foul mouthed immigrants, whose descendants may not shovel coal, as my grandfather did, or work in steel mills, but have not lost that mind set. In short, the city is an enigma, and I love it. What holds all of the pieces together and makes it a community are the Steelers. Yeah, right, you say, you're just saying that because you're a fan. Just ask a 'Burgher. Better yet, go there and look around. There is not a store in that town that doesn't trade in Steeler paraphernalia; corner bodegas, museum shops, lingerie shops, even little stores featuring "country" goods. So, it was to this glorious melting pot of brain and brawn and football mania that Marissa and I flew out to, spending the six month anniversary of Kelsey's death in the bosom of the Steeler Nation in the company of Kelsey's close friend from treatment, a soft spoken, refined beauty who is the daughter of a working class dad and an academic mother. If I am drawn to the city because it reflects my crude working class with a touch of artsy personality, then she is a reflection of the intellectual, refined side with a splash of mill grit. She understood immediately that football is a salve for what ails us, and had offered to try and obtain tickets to a game of my choosing. But, as I flew out for the weekend, I worried that this would be one more failed attempt to try and set aside the reality of our missing family member, only with the stakes being much higher. What happened was totally different than I expected. I am still puzzling over it, trying to dissect it back home, exhausted, but with a treasure trove of memories and experiences.

Here's the thing: I enjoyed myself. The trip was almost magical. And really under trying circumstances. On the six month anniversary of my daughter's death, actress Brittany Murphy died under circumstances that were eerily similar to the initial cause of Kelsey's death. But, I didn't even know about that coincidental tragedy until late in the day, spending it as I did in the company of Steeler fans tailgating in gritty determination despite riding a five game losing streak. Our hostess has interesting connections, and her boyfriend, an affable man with political ambitions and a relationship to the Rooneys on his mother's side, had acquired passes to a VIP tailgating tent operated by the Steelers. I won't bore you with blow-by-blow details, but suffice it to say that by the end of the day I had sat at a table next to Mel Blount (look him up if you need to, but it's sufficient to know that a Steeler fan who reads this will be impressed), had my picture taken with Art Rooney III (now the Steeler fans are really drooling) and watched the Steelers win a hard fought game with 00:00 on the clock. And my little rookie that I like so much, Mike Wallace? He caught the winning pass, dragging his toes inbound a la Santonio Holmes in the Super Bowl. I could not have scripted it better. Whatever happens, whatever course my life, my pain and my healing (or lack thereof) takes, I will have that day.

And life tried hard to tarnish it by throwing the harsh reality of life at us full force. On Monday, our hostess got a call as we toured the Science Center delivering the news that her grandfather had passed away. She gamely insisted we continue on with our day, but she was clearly shaken. Now our little Steel Angel has her own path of grief to follow. Unfortunately, I likely don't have the same magic balm for her that she provided to us, and it served as a reminder that I had not escaped real life, just put it on hold for a brief moment. But, that brief moment taught me some things.

I learned that there is joy after a loss so profound. It may be a long time before I have it on a consistent basis, but now I know I can still feel it. For a while, I wasn't sure. There are other things to dissect and study about this weekend, but I am so glad to have learned this lesson at the least. Oh, and I learned that the best pancakes in the world are at a place called Pamela's. Hands down, no argument.

Tuesday, December 15, 2009

Home for the Holidays

You know that you spend too much time in the emergency room when the ER doctor recognizes you. That, my friends, is a sad day. Not that having a handsome doctor smile at you is a bad thing, but when he walks in the room, takes a momentary visual check of the people in the room, and his eyes register that he's aware of who you are and he gives you, the one allowed visitor, a wry little smile of clear and undeniable recognition and acknowledgment of what is taking place there, then that's not as good. And Tuesday that is exactly what happened. I have spent altogether too many hours in the Round Rock Medical Center emergency room over the last several years. I know the drill. I know how to dress (warmly, it's always cold there), I know what you can and cannot take in (they do let you cheat and use your cell phone, but don't try and bring in a meal), how many people you can actually get back there (parents can both go back, and if your patient is dying, the whole family can stream in, all rules seem to fly away), I know what they need for patient admission and the questions they will ask you (generally, they always throw one in there that catches me off guard). I know what the monitors are and what they do. I know where the supplies are, I know where the restroom is, and I can jabber about football with the security guard on duty there, which is generally a Round Rock cop, because he no longer intimidates me in any way. I am, in short, a frequent flier.

I spent this past Tuesday in the familiar Room 3, this time with Mother. I have spent more than one long night there with first Kelsey, then Marissa, then Kelsey again, then Marissa a couple of times. Marissa seemed to time her trips over the holidays, so not only am I familiar with the surroundings, I have seen them dolled up with the trappings of the holidays. When I walked in this past Tuesday morning and casually glanced the fake holly draping the cheap-hotel-wall print hanging in the waiting area, it literally jolted me like an electric shock. The deja-vu was simply too strong.

There is something really out of place with holiday glitter and lights in a place where such serious business takes place, but then again, that's sort of what our life is like right now. Our somber morale jolts and jars against the "merry" of the season. But, after a moment of taking it all in and reconciling myself to what this particular trip was all about, I began to feel right at home.

The first time we rushed Kelsey to the emergency room in the middle of the night it was summer. She had taken a couple of handfuls of Advil. Her boyfriend had been trying to reach her on the phone and when he couldn't, he came over and he and Marissa had found her passed out upstairs in the middle of the night. I was wearing Steeler silk boxer shorts, some t-shirt that I don't recall matching, no bra, and I put on slippers to drive her the mile or a bit less to the emergency room. Greg stayed home with Marissa, so what I had on and what I had with me was what I was stuck with. And that was when I learned most of what I now know about emergency room visits. For one thing, you ain't the show, so your comfort is not the staff's concern. So the fact that you are freaked out, cold, dressed like a deranged, loose clown, and bored stiff at the same time is not their concern. And, you can't just leave and come back, someone has to buzz you in. You can't call someone to bring you stuff because you are supposed to shut your phone off (although, as I mentioned earlier, I have since left it on and used it liberally in front of staff with no repercussions),and who are you going to call at 3:00 in morning anyway? That's not a test I really want to put any of those friendships through. So, you sit and shiver and wait. Long periods of time pass between your seeing another human other than the patient, who generally is not good company if he or she is even conscious. So, on subsequent trips, I've known to take a moment to gather some things. And I keep a book in my car at all times now. One just never knows.

More recently, it's Mother who has been the cause of my strolling through the automatic double doors. Sitting vigil with mother is on the one hand far less stressful, but on the other, far, far worse. No matter how frequent our trips to the ER became with Kelsey and Marissa, there is always a level of "freak out" that accompanies you when it's your child. All those maternal instincts go into hyper drive. I don't use the emergency room like an urgent care center. If I drag my child into an emergency room, I am worried, whether legitimately or not, that she is in life threatening distress, and that's just not supposed to happen to my child. To anybody's child. Mother, on the other hand, is 91, diabetic, suffers from Parkinson's, congestive heart failure and has Alzheimer's. It's actually more a marvel when we go a month at a time without going to the ER. I accept the reality of the dips her health will take. Time is trying to pound on her. She does a good job of pounding back. That is why, however, sitting with her is generally worse. She is a bad patient. Nay, she is a horrible patient. I have described her behavior before, so I won't belabor it. And then being stuck in a small space with her for hours at a time listening to her repeat the same thing over and over and over and over and over and over again is enough to make you want to jump out the window. You wonder if that's why the windows that do exist are tiny and way up high.

This past visit however bordered on pleasant, as those things go anyway. I was appropriately bundled, had my phone with the bells and whistles, had my book with lots of violence (always helps to have a murder or two on hand to read about in these cases) and Mother could not stay awake for longer than a few minutes at a time. Sound callous? It probably is. But, I can only ask that you walk a mile in my shoes for a while before you pass too much judgment. I did not fail to worry however that she really was in bad shape this time for her not once to say she was a) a nurse, b) would not check into the hospital and c) complain about anyone who even glanced in my direction rather than address her. Of course, the handsome doctor, having remembered us from before, knew to look at her when talking, and I just listened. Occasionally he shot a secretive glance my way to make sure I was paying attention. They called in her cardiologist; another handsome man with a good bedside manner for women like Mother. And again, he acknowledged me when he came in and then went straight to her, only daring to look at me as he was leaving to make sure I got what was said. He actually handled her like putty and told her he was admitting her without giving her much say, but made it sound like a brief visit upstairs. Again, a testament to how sick she felt, she didn't complain.

So, there dozed Mother, fluid on her lungs keeping her from breathing properly and getting oxygen to an already overtaxed heart and there sat me, her only relative in a 1,000 miles, keeping vigil. I wondered once, briefly, if it was the same gurney the girls had been on, or if those get mixed up and rotated. I had slept on that hard vinyl mattress before, climbing up with Marissa once to try and catch a few hours of sleep while they treated her. But, I dismissed that thought rather quickly. Dwelling on that level of detail doesn't really help anything. Nonetheless, the surroundings felt so familiar. Yes, I thought to myself, I have been here altogether too many times. If Mother makes it through this episode, I will be back again.

And she did. By Thursday night she was stating that they had better let her go home the next day or she "would tear the building down around their ears." I should change her name to Timex; she takes a licking, but keeps on ticking. She is, as I write, back in her room, resting from the ordeal. Marissa and I are about to head for the airport to see our Steelers tomorrow, thanks to Kelsey's friend Leslie. Greg has Mother in hand during our trip. I hope I don't have to find out what a Pittsburgh hospital ER looks like, and I hope I get a respite from the familiar surroundings of our local one until after this horrible year comes to a close. Hope, they say, springs eternal. We shall see.

Tuesday, December 8, 2009

Time in a Bottle

Five days after beginning this post, I'm finally taking a moment to log in and try and finish it. As I write, I am surrounded by a mountain of wrapping paper and knotted up ribbon. For not even being done with my shopping, I am seem to find myself with a seemingly endless amount of stuff I've collected to give to people. I've already spent hours wrapping, and the pile isn't shrinking!! I used the morning to bake cookies to try and have for Christmas day when the family is here and have enough for the staff at Mom's nursing home. As I was baking, I fielded two phone calls from said staff telling me Mother wants to write me out of her will and is on a hunger strike because I didn't take her Christmas shopping yesterday (I spent it at the vet trying to figure out what is wrong with one of my dogs. A few hours and several hundred dollars later, we're still not completely sure, but she's sleeping peacefully beside me stoned on pain medication, so for now anyway, she's having a happy holiday). Now I'll spend the balance of the day trying to convert the mountain of miscellaneous stuff into a mountain of wrapped miscellaneous stuff without feeling horribly guilty about what I'm doing to the environment with all that wrapping paper and ribbon and eventually have to gut it up to go deal with Mother. My back hurts, my head hurts and my football team sucks on an unprecedented level and my own Mother routinely hates me. Even if Kelsey were here with us, I might be nominating this as the worst holiday season ever, with last year being in the running and probably edging this one out by a red reindeer nose. Of course, this one now wins hands down. The bottom line to all of this is: the rest of life doesn't stop when the holidays come around, bringing with them all the extra little tasks, errands and parties. It amazes me that any adult finds this time of year enjoyable. And, once again, the actual reason for the season gets trampled in all American greed and excess. But, I know that people do actually enjoy the season. Maybe I'm wired wrong, I don't know. But, I really don't have any more time to think about it, there are presents to wrap and a football season to mourn. Anyway, this is what I wrote starting last Tuesday:

I'm just getting home from a memorial service the funeral home held for their clients. I picked Greg's mom up and brought her back home in fog thick enough to cut with a knife, spending probably twice as long on the road as we did at the service. But, it was a nice affair and, as emotional as it was, I was glad I went. However, here I sit, another evening mostly gone when I should have been here working on getting my holiday cards out. And there are gifts to wrap, and some of them need to get in the mail. Then on Friday I have to come up with a dessert to take to a dinner at Mother's nursing home. I have my own food issues (I get kind of queasy around cafeteria style food), so this feels me with total dread, nonetheless, I have to do it. And this brings me to my second night of anti-holiday rant. Think of this as my own Christmas Carol and last night we were visited by the Ghost of Greed. Tonight we are traveling with the Ghost of Time Constraints.

The holidays bring with them a lot of extra errands, tasks and mandatory social situations. Add that to the normal time drain of football season and the award season movies coming out, and time management becomes a high walk across a very tight rope. And it's just all piled on to all the normal stuff that we have to do everyday. I don't know about the rest of you, but I haven't had a moment where I thought to myself, "Wow, I'm bored." in I don't know how long. I would actually like a moment like that. I would probably use it to sleep. I don't have time to shop for gifts, let alone wrap them without something else falling by the wayside. Then I have to rearrange the whole house to put up the holiday decorations, only to face another arduous day to put them all away. And we're supposed to experience comfort and joy this time of year? Who the heck has time?

Monday, December 7, 2009

Put a Bow on It

The Mean Season. Our grief counselor coined the phrase to describe what the holidays are for eating disorder patients. Unfortunately, the phrase fits more than that particular group. Personally, I think it started kicking me around about the time I became an adult and suddenly had to buy people gifts with my own piddly income. I've been black and blue just about every year since. I've just spent the last 45 minutes staring at my bank account, marveling over how completely empty it is. Finally, I decided staring at it really wasn't helping anything. I'm still trying to convince myself that hyper ventilating won't do much good either. Scanning the activity, it's a lot of extra expenses that come with this particular time of year. And I'm not done. Granted, this is an unusual year. Most years, I begin to amass Christmas gifts in earnest around May. By now, I should be in mop up mode only. This year, I became a little distracted and did nothing about the holidays until, well, the holidays. And, granted, this year, I am coming off five months of unemployment, and have been a little more than generous with myself since going back to work in my various vain attempts to forge back into life. But, truth be told, there has never been a time when money, or the lack thereof, didn't factor into the holiday equation somehow. Our first Christmas as parents saw us so broke that we did all our shopping at Sears because we had a credit card from there. The only Sears store in town had all of two aisles of toys, so our choices were limited. I remember how stressful it was to look over those picked over shelves and try to find decent toys for my daughter, wanting so much to shower her with gifts to show her how much she meant to me and wondering how I would ever pay for it. One of the items I finally picked up for my six month old was a Cinderella tote bag. I didn't really think my infant daughter wanted or could play with a tote bag, but it was something I could give her that maybe she would like someday. And, as it happens, the tote is in use to this day and is in Marissa's possession now. My little baby girl seemed perfectly content with her lot in life that year.

Once the kids got a bit older, the pocketbook had a little more heft to it, but along with a new largess came a new level of expectation. I remember the first Christmas we hosted here, with Kelsey in full blown tween mode. That meant her wants and desires were tipping toward bigger ticket items, but she was too young to really have a concept of what things cost. What she could grasp was volume. As she watched her two younger cousins rip through present after present of less expensive toys, her expression became darker and darker. She held her tongue until later, but eventually gave voice to her displeasure at the seeming inequity. I was not shy in responding with how I felt about that. In fairness, once I explained the economics of big girl toys versus the things she wanted at that point, and reminded her of the piles and piles she had brought home in year's past, she relented. But, I knew then I had created the All American Monster. Somewhere down deep in their minds, my children knew that the fact that they had gifts at all had some tie to the birth of Jesus, but it was a cursory relationship at best. The thing that really mattered was what they were going to receive. You can say what you want, but even in families where there is a lot more traditional religious dogma going on, the children don't run down the stairs Christmas morning to sing praise to Baby Jesus. They want to see what they're getting in His name. And it better be good.

Don't get me wrong. I love buying gifts for people. Actually, let me amend that. I love it when I give friends or family members gifts that please them. I try pretty hard every year to make that a slam dunk. But, there are the inevitable misses. The fallen faces, the slightly insincere thank yous, or the lack of a thank you at all, later to have a friend of a friend let it "slip" that so-and-so wasn't overjoyed with what you gave them. I think my track record is fairly good with some occasional strokes of brilliance, but I've been stung by all of that. Mostly, I am stung because I don't like the idea that I've disappointed someone I think enough of to actually get a gift for. If I had unlimited resources, that would be less likely to happen. I would imagine Donald Trump generally pleases people with his gifts. And, wouldn't you like to see what Tiger Woods gets his wife this year? My guess is, whatever it is, it could resell for a large chunk of the national debt. Anyway, for my part, hopefully all the people I've ever given a lousy gift to were at least able to re-gift it and get some good out of it that way.

But, that's just the tip of the gifting iceberg my not-so-luxurious ship is heading for. There's the politics of gift giving: do you get a gift for your spouse's boss just because he's the boss? And, if so, how much do you spend? And what do you get since you know nothing about him, and you know your husband's going to be no help at all? I could go on like that for hours. I'd sound like I am whining, but it's the same kind of debates that are repeated in households all over the country. I'm just ungracious enough to verbalize it. But, there's no point. Time's a wasting, and I've got more shopping to do!

Sunday, December 6, 2009

It's Ornamental My Dear Watson

If you look at a family's Christmas tree, you can see clues about them. You see a lot of what they want to present to the world at any rate. My tree, for instance, is peppered with a lot of black and gold, dog oriented ornaments, a lot of Star Wars themed baubles, and a few Cowboy ornaments just to pretend we're giving equal time to the man of the house. Like me and my life, my tree is a loud, random collection of colorful stuff.

That was not my initial intent. Originally I thought I would have a tree that was very formal and built around solid colors. I started out not wanting the cornucopia of ornaments I have now, and built a tree around white lights and two colors of glass ornaments. The white lights survive, but, I realized today as I dressed our tree, not a single ornament from that first tree is still around. I'm okay with that actually. The random collection that adorns our tree is really more indicative of our lives than the sterile, formal tree I once envisioned.

Like many trees dotted throughout the world, my tree sports a history of our family, dating back to our wedding. We were married at Christmas 25-years ago, and some of the ornaments that Greg's mom used on the little tree that was at our reception now adorns our tree. From that point forward, most of what hangs there now are actually gifts over the years. Every year, Mother gave the girls and myself each an ornament. I long ago lost track of which ornament was which, and that used to worry me, thinking at some point I would need to split them up to allow the girls' a start on their own trees. With a heavy heart I realize now that it no longer matters. Marissa can have what she wants, if she wants any of it. As I hung each one today, however, what I could still tell you was who gave it to us and roughly when it came into the fold. The ones that do not really connect to us in any real way are generally from my mother. She was fond of Hallmark ornaments. I have a Garfield ornament, a few Currier and Ives inspired ones and a few Peanuts ornaments. She also provided us with lots of teddy bears. Not that I don't like any of those things, mind you, but I probably would not have picked them for myself. Not to worry. My friends have supplied me with the Steelers this and Steelers that, Darth Vaders and starships that dominant these days. My husband even lent a hand and added Han Solo to the mix. They are the harbingers of better times. Of times when my children were young and starry eyed about the holiday. Before it became a time that they dreaded because of all the food triggers and stressful family dynamics.

And that's where the story a tree can tell you stops. As I glance over at it now, it sits there all dressed up in its wild array of colors, trying to send a cheerful, hopeful message to the world about the family who lives in this house. But it doesn't say anything about the hole in our hearts, or the pain that all of us experienced throughout the years that led to this, the most painful year of all. Someone new who walks in now would think we're just a family of sports fans with a sci-fi nerd in the mix. Unfortunately, we are that, but we are more than that as well. Would that we were not.

Wednesday, December 2, 2009

A Diva's Day

Well, I've ridden the express train to Bummerville long enough, I would imagine, so it's time to switch gears for a bit. I am asked from time-to-time about Kelsey's cat, the famous Tum-Tum (would should have been named Celine). She is her owner's prodigy, of that there is no doubt and in her Kelsey's spirit lives on for us. And, as such, not every day with Tum-Tum goes all that smoothly. She can keep things stirred up.

She is a very attractive creature, delicate and fine boned. Even before she became ill, she weighed in less than 11 pounds. Now, even totally healthy, she does not possess a voracious appetite. This seems odd to us, since our other cat, Charlie, believes he is a panther and stalks prey and never wastes an opportunity to eat it, whether it is a bird trying to catch a little rain water out of the bird bath or my left over milk in the cereal bowl. I watched them dine together the other day; Charlie dug in without much regard to decorum. Tum-Tum watched him for a moment with what I swear was a look of disdain, finally settling in to take some delicate nibbles of her own.

How she got to the point where she is eating in the same locale as her larger, much heavier housemate was interesting to witness in and of itself. When Kelsey first brought her to the house, she made a few tentative trips downstairs to satisfy her feline curiosity, but I think she decided that with eight large, strange beasts anxious to meet her, curiosity might just kill the cat, so she retired back up the stairs and her interaction with the rest of us was limited to us hearing her loud cries from the landing when Kelsey came home or when she clearly felt Kelsey had been gone too long. She would occasionally lean through the stair railings and allow us to pet her momentarily if she'd get particularly lonely, but for the most part, we weren't the ones she wanted to see, and she didn't mind that we knew that. Problem for her once Kelsey was no longer there for her, she was upstairs all alone. What's a diva to do with no audience? So, with deliberate care, she began working her way down the stairs. First, she began hanging out on the landing most of the day with occasional forays into the kitchen when the coffee was brewing. I moved her food there. Not too long after she made her way into the room where we keep Charlie's food. An odd kind of space that appears to have been originally built almost like a greenhouse, it now houses my exercise equipment. Walled mainly by windows, it is accessible by a cat door that the dogs cannot breach. It catches a lot of afternoon sun, so she took to stretching out on the treadmill during the day and curling up on the weight bench at night. Eventually I moved her food bowl and litter box there.

She could see us from there and we her, but she still was isolated for the most part and, it would appear, lonely. Gradually she made tentative trips out of the exercise room. She would wait until the dogs seemed settled and then, with great stealth, sneak out and jump up to the back of Greg's chair where she could curl up on the back of it. Then, one night she crawled down into his lap and snuggled with him for a while.

She got bolder, deciding that visiting me in the morning as I brewed coffee, and following me into the bedroom, leaping onto the highest pieces of furniture to be safely away from the dogs. At some point, however, she learned that she could intimidate the dogs. All of them. No matter their weight or their station in the pack, with a swipe of her dainty paw and a guttural growl, she could send them packing. Once she discovered that talent, she moved into the main part of the house and she has reigned there ever since.

This dainty little thing has a vicious streak however. She will lure an unsuspecting human over with her plaintive cries, leaning into their strokes for a moment, then will suddenly grow tired of the fawning and take a swipe at him or her. Offended or shocked, the person will pull away, only to have her then decide she wants the attention again, and she will follow the person around mewling loudly, only to repeat the process. Personally, I've learned to watch her tells. Her pupils dilate a little more right before she turns deadly, in addition to the twitching tale. The long and short of it is that her mood turns on a dime. Hard to say what will swing the pendulum, so you just have to stay on guard when dealing with her.

One thing we learned early in the football season is that she does not like chaos. One night Greg invited several people over to watch the Texas game, and her reaction was violent. Literally. She used that "woes is me" cry of hers to pull the guests over to her, whereupon she would swat at them. Without fail. Good thing her swats and bites barely scratch the surface.

Now she is the Queen of the Castle. She roams the downstairs, causing the dogs, almost all of whom could swallow her whole if they had a mind to do so, to give her a wide berth. She is highly vocal, making sure everyone knows exactly where she is at almost all times, not always at the most convenient times. Open any kind of door, she is right there, ready to slip in. She has a real penchant for tight spaces.

A couple of days before Thanksgiving she seemed to be aware that plans were in the works because her mood turned dark and she sulked around, striking out at the hapless humans with more force than usual, drawing blood for the first time since she decided to interact with us at all. She made a complete nuisance of herself, draping herself all over wherever and whatever I didn't want her to. And Charlie, not to be left in the dust, followed suit by being uncharacteristically obnoxious, as supported by the photo of him draping himself over the china.

Tomorrow I will unpack the Christmas decorations. I am interested to see what her reaction will be. I know it will be notable whatever it is. She knows no other way.

Sunday, November 29, 2009

This Old House

When I was going through Kelsey's things trying to find the right quote to use for her memorial folder, I found a detailed list she had made entitled "Seattle". It was a list of things she needed to do before she could move there. I could tell it was a recent development based on some of the items, but it wasn't the first time she had gotten it in her head to try and get away from here. She had tried to convince me to give her bus fare to Boston at one point, having an online friend who had offered her a place to stay. She had considered Arizona after that, wanting to be closer to her aunt and younger cousins. She had not discussed Seattle with me, probably because I would have said the same things I always said, which all related to how she proposed to live. And I had pointed out more than once that wherever you go, there you are. You can leave the place, but not the disease. It would move with her. Yet, at the same time I understood her compulsion to leave. and a part of me wanted her to make her escape for a number of reasons. I confess that having her somewhere else, particularly as she deteriorated over the last year and Mother took more and more time and attention, was appealing just for my own selfish purposes. But, I also understood the desire to leave the shadow of her adolescence behind and try for a fresh start somewhere. Plus she had a big spirit, and it was being unduly confined here. She had been born and raised in Austin and aside from her time in treatment, she had never lived anywhere else (Round Rock versus Austin does not count - they are essentially different shades of the same color). The problem was that the practicalities outweighed everything else. She had no money and her prospects for being able to go to a new place and find work, shy and unwell, was slim (pardon the Freudian slip). So, to a large extent, she was stuck here. Her list of things she needed to do or pay off before heading off to Seattle was a big dream with little hope of coming to fruition.

Sunday morning as I went outside to put out the deer's food, I looked around me and realized I'm very much in the same situation. I would rather be just about any where but here. I looked up and down the quiet suburban street, hoping no one was peering out their windows back at me in my unfortunately coordinated outfit of slippers, flannel blue pajama pants and brown hoodie and thought how nice it would be to be someplace where no one could see what I wore to feed the various wildlife and where I wouldn't have to worry about the man from down the street driving by and yelling at me for feeding them at all. But, those are minor irritations compared to the house looming behind. This unusual, interesting house that we have occupied for the last 11 1/2 years, much to its detriment, holds way too many memories for my liking. I want to be away from it. I feel as though I am almost a character in a Stephen King story and the house holds me hostage somehow. As it is, I can barely stand going upstairs, and it has fallen into a sad state of dusty disrepair. I had a vague notion of spending some of the long weekend cleaning up there, but I trudged up the stairs once the entire four days and then only when I absolutely could not find what I needed any other way, and with a fair amount of delaying on my part. It's not that I'm scared that I will run into some otherworldly apparition up there, but there are echoes from both girls' pasts that will always be here for me. There is no secret that I've long yearned to go back north as it is. This has always been a place I was hoping to hang my hat temporarily until I could get back to someplace where there are real mountains and actual seasons (as opposed to really hot, spelled briefly by a few weeks of not-so-hot and about two days of actual cold). But now, I feel as though I might suffocate if I cannot get out of here; this place has become oppressive.

Of course, with my mom not in any shape to even make it here for Thanksgiving dinner, let alone be hauled across the country (although she herself almost daily talks about when she'll be moving back east), leaving the Austin area isn't really practical, so, like Kelsey and my mother, I am largely trapped here. However, I reason with myself, we could at least move back into Austin. Maybe back to Hyde Park, where my Sunday morning outfit and matching disheveled hair would be considered Big-Lebowski-Chic and probably admired, along with my Democratic tendencies, as proof of my individualism. Worst case scenario, it would not catch even a sideways glance. And whatever house we lived in would have lots of history, but it would belong to someone else, not me. I would be free to start a new chapter in it. But, these are all wistful thoughts. I am completely and irrevocably stuck here. At least for now.

All these thoughts make me sad. Sadder than I already am. I love this house. As much as I hate it. This house deserves better owners than us. Like our pack of dogs, it suffered as more and more of our resources funneled into other things. Built in 1980, the house needs a consistent level of care that we haven't been able to provide it. There is the break in the septic pipe, there is a hole in our back porch, roots from the ancient and massive oak out back long ago grew through the pipes leading into the house, making the upstairs bathroom unusable except for the sink (a situation we purposefully left untended for years to keep Kelsey from purging up there -not that it was particularly effective). I have popcorn ceilings still, for crying out loud. The list goes on. I do what I can with what I have left, but we have lost pace with the march of time. Without a rather massive infusion of cash or someone with more handyman skills than I possess, time will continue to chip away at this poor old house. Of course, the paradox is that I cannot even realistically think of selling the house without making some of these repairs, but I need to sell the house to be able to afford to make them because, like most of us, it's my biggest investment. See what I mean, Stephen King could not have entangled me any better.

I think the house must hate me for my neglect. Just as I hate it for housing all these memories, even the happy ones from the very early years, because they are so painful to face right now. But I saw two Super Bowl championships come to me from right in this room. I have all my deer here, including my beloved Red, who is named for the Katherine Hepburn character in The Philadelphia Story and who will respond to her name when I call for her. If you look out the windows just right, you can't really tell that you're not in Montana and there aren't mountains past the graceful oak trees that tower over the house. I can meander down to the creek at the back of the property and watch the egrets as they search for fish in the waning light of day, spotlighted by fireflies fluttering in and out of the shadows. How can I leave these things? Maybe the question is, how I can get back to the point where love of those things outweigh the shadows of the other things that passed within these walls?

Friday, November 27, 2009


Well, we knew it would be tough, this first major holiday without Kelsey. Finding the right words for it is a challenge. I really cannot. For me personally, the actual holiday itself was not as disastrous as I worried it might have been, but only because there was the busy work. Coordinating the meal, worrying over the house with eight dogs and the dust and muck that creates, pulling out the linen and china and crystal, worrying over whether Kelsey's Diva cat would make a mess of things, all of it served to distract me from the place at the table that I wasn't setting. I imagine things were harder for Marissa and Greg. They both pitched in to help with the preparations, however, and the day pulled off as a result of family effort, in a way that we really haven't had in a while. Dealing with Greg's mom was hard, I will readily confess it. Her own grief, as from the very beginning, clashes against our own. In a way, my mother's contempt for Kelsey has made it more bearable to deal with her. She rarely speaks of her and doesn't miss her, so comforting her is not among our many tasks. Kelsey always gravitated toward my husband's family, finding a level of understanding on that side of the genetic fence that she couldn't get from Mother. Maybe Mother couldn't go there because of the lack of actual blood ties, but I tend to think it was more generational. Mother was, after all, practically old enough to be Kelsey's great-grandmother and she therefore has a more buttoned-up approach to individual frailties. Add that to her advanced dementia, and it's a wonder she remembers I lost a child at all. But, my mother-in-law is another story. She feels her granddaughter's loss like an acidic burn because they were close, and she has not had the opportunity to process it and try and come to terms with it. That is very obvious every time we have any interaction with her. So, we try to limit that interaction. Because one thing we know for sure is that we cannot act as her outlet. She needs one, on that we can agree. But, it cannot be us. I believe we can also agree on that point. Yet, we know she means well. The situation is one of those messy scenarios that likely play out in every "PT" household. Everyone grieves in their own way and those ways don't always fit together seamlessly. The holidays put a spotlight on it. Intellectually I know that, but I did find myself wondering how I was going to get through Christmas if she pushes the same buttons. Worrying about it is premature, I suppose. I need to get all the way through this one first.

As it turns out, Mother was too tired to come over. The irony of this is that we put on the traditional holiday dinner mainly for her benefit. Greg's mother would have hosted us at her apartment dining room as an alternative. Further irony is that the receptionist had called me earlier in the day to say Mother was up front waiting to be picked up. I explained we hadn't planned on picking her up that early so we wouldn't wear her out. In the end, she did not seem to be particularly upset that she missed the time with us, and I have to accept this is just the way it goes when someone is 91 with multiple health problems.

I noticed Greg was a little more edgy than normal during the UT game and Marissa was hard to read, but we all got the hours to pass and the day to end finally. I failed, however, to mentally prepare myself for the next day. Black Friday. Traditionally, this is a mellow day. It's a day to catch up on chores or errands long pushed aside. This year, the linen tablecloth clean and pressed, the china stored away, the house still relatively dog hair free, the quiet settled in once more. I am not sure why, I guess maybe because I was so intently focused on surviving the actual holiday, I had no counted on the oppression that would come with that silence. As I have mentioned before, the quiet house gets to me. I think the same was true for Greg as well. Neither of us stayed at the house for long. I fled like a perp leaving a crime scene. Greg left before me. I spent the day out, coming home having suffered through a bad movie and with blond hair.

Now, it's Saturday. I have TNT on a little too loud. I have laundry waiting and poo to scoop in the yard. I cannot continue to flee the scene, but listening to Kyra Sedgwick's thick false Southern accent does not cover up the quiet in the background, and the yawning void it represents. I find that I am becoming impatient with myself and my frail state. I want to take control of myself again and enjoy time alone again (well, surrounded by a pack of dogs and an ill-tempered cat), but I can barely hear myself think with this stupid show on. So, I think I'll leave.

Monday, November 23, 2009

Perspective - Get Some

As everyone who has ever even laid eyes on me knows: I bleed the Black and Gold. Sometimes that is more fun than at others. Right now is one of the not-so-fun times. They just dropped a critical game against a team that they dominated statistically, and for whom winning is a real rarity lately. On top of that, our two time Super Bowl winning quarterback gets hit in the head (and this is the man who planted his face through a windshield and almost died a few years back), and our veteran, trusted back-up breaks his wrist. Things look dark. I have fought back tears all day. All I have, I keep telling myself, are these Steelers. They are all that are keeping me going. I rely on them. I can't imagine what will happen to me now. Overly dramatic? As Sarah Palin would say, "You betcha!" I wallowed in self-pity like a fat pig in a deep pool of mud. Then I came home tonight and read a comment left on "Steelers Today" Facebook wall. This raving jacka*s is calling for Coach Tomlin's firing, pointing out that Coach Cowher was a better coach (in his opinion) and only missed the playoffs once. Then he committed the Cardinal Sin. He finished by stating that he followed the Steelers more than most of us. I commented back in a less than discreet fashion. Here's the lack of boundaries coming out of me again, I'm afraid. I could have just grumbled a little at how horribly ignorant and probably racist he is, and then move on, but I'm not about to suffer this kind of insult, however. I just cannot allow his ignorance to go unchallenged. Someone had beaten me to the punch on correcting him on the fact that Coach Cowher did in fact miss the playoffs more than once (five times was the answer), but his response was polite overall. I was less polite. I called him both wrong and insane. I did not cuss, but only because I was afraid Mr. Steeler Today would block me if I did. I am livid beyond belief. I mean, c'mon. Let's refresh, shall we? Who are the defending Super Bowl champions? Mmm, that would be: US! Tomlin, in his young career, has not missed the playoffs, and we are still on pace to make them. We may not, but c'mon, who would dare call Jeff Fisher a bad coach and look at the start his team had this year? Greg has pointed out to me since we first met that the degree of separation between the best NFL player and the worst one is pretty minor. There are 1,696 players in the NFL out of 305 million people in the United States. It's a pretty exclusive club. The Chiefs didn't suit up to lose the game. It was a shocking loss, in that I'll agree. But, that's all it was. It wasn't the end of the world. But, you know what, it took that incredible dirtbag to bring me to that realization. My tendency is to hang all my hopes on the Steelers, particularly after all my other little forays out in the world have tweaked my grief rather than helped heal it. But, I was once again reminded that I have to do the work on my own. Big Ben cannot wipe it away for me. Coach Tomlin cannot call a play and make it disappear. So, I guess I should thank Mr. Supreme Jerkface for helping me get some perspective. I can only hope somone does the same for him. (And don't ever tell me you follow the Steelers more than I do - you incredible ignorant bleep!)

Saturday, November 21, 2009


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.

Wednesday, November 18, 2009

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?

Monday, November 16, 2009

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!

Sunday, November 15, 2009

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!

Thursday, November 12, 2009

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.

Wednesday, November 11, 2009

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...

Friday, November 6, 2009

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!