Keeping Up Appearances

Thursday, March 4, 2010

Been more than a few days since last I wrote. Sometimes it's just too depressing to rehash everything back over again after each day. Sometimes I think I need a break to not think about it. To try to go to sleep without thinking about it. I am just a kid after all, and it seems lately I can never remind myself of that enough.

Earl and I went to Big Spring today. Though it was yesterday that BB woke me up to go. She so thoughtfully opened the door then knocked. And I, still comfortably in bed at 9am (a luxury of retired persons, such as myself) threw the pillow over my eyes and kindly reminded her that she had the wrong day. But she insisted it was the day. And so I got up. I put some coffee on and went and got the calendar and showed her which day we were to go. "Yup it's TOMORROW, B."

Not being able to ever be wrong ever, she looked me straight in the eye and told me it was Earl that had got it all wrong, "Well, he just thought it was today, and you know, he is just SO confused lately because he has Alzheimer's Disease, and I tried to tell him that it was tomorrow but he just wouldn't listen." Um... did she just accuse Earl of having Alzheimer's Disease? Did she really just throw him under the bus like that to cover being wrong in her own confusion? Why yes. Yes, she just did!!! Hell all mighty!

So there was that. Then this morning I found a spoon covered with TP sunk in the toilet (seriously, what the???) and feces in the sink... and in the kitchen, okra on the stove, which had been turned off, THANK GOD. I found it sitting there cold and uncooked in a pot of water, there are two full bowls of it in the refrigerator, mind you, one of which she cooked unsupervised yesterday, in the morning before I woke up. Upon my discovery, she told me that she didn't turn it on on purpose because she wasn't allowed to cook by herself, and had just left it there to be "ready to cook," overnight, you see. Then, there was a lot of paranoid yelling set preemptive in anxious defense because she knew deep down that she had violated my trust and request to stop cooking okra all by herself. She has been yelling, at me specifically, more and more lately. Just plain ornery.

These have been the days. Days mixed with paranoid hysteria. Days of total confusion. She is really just lost most of the time, can't seem to remember much of anything. She knows she can't remember and it is starting to drive her crazy trying to keep up these little lies she tells, trying to maintain the outer appearances of sanity. It is easy for her when visiting through directed conversation on the phone, but in real life, in real time and space, in 3D, it is another story. I have just stopped trying to tell her the truth or correct her in effort to avoid a harsh defense, more confusion, and ultimately combative behavior, which is what I get whenever she is wrong about something. She keeps saying she can remember stuff just fine and that the problem is that she's just plain "stupid." Been hearing this word from her a lot and it damn breaks my heart.

At this point she is visibly struggling on the inside with the fundamentals of the thinking process. It seems like lately she has been loosing her thoughts more often than she can communicate or understand clearly. Having spent so much time with her over these past 4+ months watching these changes occur gradually and not so gradually, I can actually see it happening now on her face, in her eyes, like a switch has been turned off and everything is gone inside and hollow and dim for a bit. Just lost. Like light bulbs flickering in an electrical storm. A shorted circuit, without the cells to function all the way.

She has also been exploring the house as if it's a complete mystery to her. Like she doesn't know what is in each room. She's been walking around just staring blankly at things, clearly lost and trying to find her way, occasionally asking me to explain something when I've gone to find her. She has been constantly opening all the cupboard doors in the kitchen, just staring inside randomly examining all their contents. She has been doing this all day for the last few days over and over again, for hours. This is the latest.

As I said before, Earl and I went to Big Spring to the VA dentist today. Paula came and watched B while we were out all day. BB loves her still. So that is all working out really well. Paula has earned her trust, and I'm hoping that will help for giving B pills. We shall see. As you all know, I will be going to Austin on the 16th of this month for a week or more doing some fun young people things at SXSW with my good friend Vicky. Hopefully Paula will be able to hold down the medicine routine, and we can have a plan set for this responsibility going forward.

Earl and I had a good talk while we were alone today, and it is nice that we can speak about all this hard stuff so openly and honestly with each other. We spoke about each of our concerns for her progressing condition. About her general mobility and weakened strength. How she is, physically speaking, getting closer to really having to be in a care facility. And how it will be a struggle to get her there, but that ultimately this is what will happen based on her disease. Fantasy aside, it really seems that the kinder thing would be to make this transition before she completely loses the mental capability to adjust, waking up everyday in a place that she was never given the chance to remember. It makes me ask the question: what really is going to be best for her long run?

Prune Abuse and Rock 'N Roll

Thursday, Feb 25, 2010.

I awoke this morning to an orange tinted toilet seat. It looked clean, but it was definitely orange. Hmmm. Odd. Nothing a little hard bleach job couldn't handle.

Wished B a good morning and gave her her pills, Earl was still at the bank having coffee. She thanked me and said she had some other good pills in the cabinet, her fiber laxatives, but that they hadn't been working so well for her lately. She confessed she had had an accident in the wee hours last night. Not from the fiber laxatives, which apparently don't work well enough, but from her old nemesis, PRUNES (insert unhappy face here). And so I had naively thought that she was really over prunes, they are never her friend, but the battle of staying thin rages on even in Alzheimer's-land. Prunes the weapon of choice this time, her body ever the battlefield.

She confessed that she had intentionally abused them, and that this was not the first time. Believe me I know it wasn't the first time. There was a time, before the Depends that this was a weekly if not nightly occurrence, and she would creep into my room bare assed, save the turtleneck (obviously), looking for clean pants. Thank god those days are behind us. So yes, I have had to deal with many a laxative abuse disaster. They are messy. They are NOT fun. You are all very very lucky that I wasn't documenting these great adventures for everyone back in the days before Depends. You would have asked me to stop writing.

Somehow even with the Depends, last night's events proved explosive. She said she messed the whole bathroom (often we get a splatter effect all the way over onto the tub somehow... don't ask, that bathroom is like the Mystery Spot of fecal matter, no laws of nature apply). I told her she should have gotten me up to help her out, but she is stubborn and was embarrassed (understandably) and didn't want anyone to know. I am still boggled as to why she told me any of this after going through the painstaking efforts to hide it all. Oh sweet dementia. Somehow she had managed to "clean" this one up on her own without waking either Earl or me, she said she even scrubbed the carpet with carpet cleaner! Christ, it must have taken her all night. She can barely get on or off the couch, lord knows how she got down on her knees to scrub the carpet. The carpet was spotless this morning! Just WOW.

Anyways... after she spilled me her secrets, I asked her to play me a song on the "fun machine" (electric organ) to show me the ropes. This lifted her spirits considerably. She started playing "I Don't Know Who Holds Tomorrow" (a catchy, albeit churchy kinda hymn) from sheet music, and was playing pretty well considering her gnarled arthritic fingers. Earl came home while she was toying around and sang a bit for us. He has an AWESOME deep old-man voice, and I am trying to convince him that the three of us should start a band (I am also trying to convince him to go skydiving with me for his 86th birthday, which he seriously considered, with a big ol' grin, for about five whole minutes... then shut me down... *sigh*... baby steps). Tomorrow, if BB can remember stuff, I get my first organ lesson, peddling some sweet synth outa that fun machine. ROCK OUT!!!

Back at the Ponderosa...

Wednesday, Feb 24, 2010.

Well today was brighter. No poop to clean, no fires to put out, and no meltdowns! I can only call that success. It was sunny out finally, after all this bummer winter weather, and I went out to the farm to paint. B was doing a lot better this morning, she actually knew that we were watching Gunsmoke while we were watching Gunsmoke, and knew that Bonanza would be on next. This is the telltale mark of a good day. You know, she can forget my name, or her children's names (or that they are all still alive, which is pretty common) and I'm totally used to it, but when she forgets who Festus and Little Joe are I just start to lose hope.

Before I left for the day I showed her a picture of Avery cooking brownies that Aunt Becky had emailed me. She clung to my computer with both hands for no less then ten minutes and I was afraid I'd never get it back again to show Earl. She had a great time talking about Tyler and Aves and kept saying how much she wished she lived closer to them so she could see them and Leta more often and maybe even get the chance to see Aunt Becky again. She was happier lost for a moment in that one single thought than I've seen her in more than a month.

She tried to eat dinner but said she couldn't chew it. Earl gummed it down no problem and he is missing more teeth than she is right now. So much for gourmet cooking, when you can have fudgesicles instead. Hmph! We watched "The Diary of Anne Frank" on the classic movie channel and B just couldn't follow what the plot was about throughout the entire movie. "Do ya'll know what's going on here?" "Well, B, these guys are hiding from Nazis and they cant leave the house, the whole movie is like this, they're in hiding." What a tough one to sell. We kept getting this question over and over and over again. "Ya'll following this?!"... "THEY'RE HIDING. FROM NAZIS. THEY CANT LEAVE THE HOUSE!!!" "Oh, ok"... "What's going on here?!" "THEY'RE HIDING FROM NAZIS!!!" "Oh, alright"... "Why are they hiding again?"... and so on and so forth, into echoing delirium.

Earl is a bit under the weather right now, has a nasty cough thanks to some infected visitors, and side note people: DON'T VISIT OLD FOLKS (OR ME) IF YOU'RE SICK!!! But he's acting the mighty tough guy as always. Says he's fine. I keep making him my spicy ginger honey tea and he says "it's kicking its ass." So far BB and I are immune to this plague, but I already decided that I wasn't getting sick, and that usually works for me. Mind over matter, I'm just cool like that.

The Growler

Monday, Feb 22, 2010.

Haven't written in a few days, mostly because its been the same sort of stuff around here. Was holding out for something less depressing but hey, you get what you get here. B has been pretty out of it still. Earl made the comment to me the other day that it seems like we get just one "good day" with her a week, no matter how we try, and he is pretty right on this assessment. She has been so out of it lately. Not remembering what we are watching/talking about/doing, while we are currently engaged in it, and reverting to those nasty behaviors that I thought she had lost long ago with her memory.

She has started GROWLING again. Growling to herself when she is frustrated, or more often growling at us in even the slightest opposition. I caught her the other day (when she thought I was in the other room) growling so nasty at Earl when he had asked her, and kindly so, to try not to use her fingers for cutting and serving pineapple upside down cake (we lost the previous cake to a savage late night finger banging). It was almost like witnessing a demonic possession and I can only describe the actual sound to be like that of a rabid wild animal mad with rage and ready to attack. I know I make jokes here, to ease the tension, but sadly this is not one of them.

I had almost forgotten how she used to growl in her heyday. The Alzheimer's changes behavioral patterns and I had thought for a while the disease was almost a blessing, because, in it, I thought she had forgotten how to be miserable and nasty (which I say lovingly and honestly because we have all shared those moments with her at different times). BB can get N A S T Y. Needless to say when I touched her shoulder immediately after this hellish growl and asked her to "think positive" and not act so mean, she became embarrassed she had been caught in such behavior, that was clearly and only intended for Earl, and was sweet as pie to me and to him.

In other news, she had spent the last few days NOT using the walker, even when reminded, and is still pretty slow and frail, so I was watching her movement like a hawk, hoping I might catch her if she fell. I have since noticed another shift in her mobility. Getting off the couch has been visibly difficult for her, but lately it has become this ordeal, this battle against physics. She has to push herself up to get off the couch, like a rocket or a spring. It takes her about three tries to get a good blast off, and when she does get on her legs it is rocky. A lot of the time she falls right back onto the couch. Sitting down, has also become less fluid in motion. She now bends her knees slightly, points her butt in the direction of the couch, points it out as far as she can. Then, once she has no doubt judged the distance and path of trajectory, FALLS into her seat. When I say fall I mean she commits to this fall. She should just cover her eyes because it is clearly a gamble. There were many times I watched this this weekend holding my breath and crossing my fingers she'd hit the couch and not the floor. There were a couple of close half butt on couch landings but so far so good.

Today, she used her walker all day so that was a relief. And she liked dinner and actually ate it all for once, but it was homemade chicken and dumplings so she would have really been crazy not to. Yesterday she HAD TO have lasagna. We had no lasagna. She reminded me Pizza Hut had lasagna, she had seen it on tv. And couldn't figure why we couldn't have lasagna. She has no patience at this point and when she wants something she wants it NOW, like a spoiled child. And so I went to get lasagna, despite having dinner underway. Got home, she had one bite of the lasagna, and said she couldn't figure out why I hadn't got enchiladas like she had asked for.

*Sigh*... I think I'm ready for one of those good days each week that Earl keeps reminding me about.

No More Dr. Appointments For A Little While...YEA!!!

Thursday, Feb 18, 2010.

Took B back to Dr. Joplin this morning as scheduled. She was not enjoying it at all, and was dead afraid that they wanted to look in her vagina when they sat her on the examining table. What a relief that THAT wasn't happening today! Whoa Nelly!!!

So basically, she has some plaque in her carotid arteries but nothing that should impair their function or cause concern. She took yet another blood test to check her potassium levels, and they called us with the results this afternoon. She is fine, totally normal. She is amazing at passing all these tests, don't know how she does it. They want to see her again in three weeks just for another check up.

I went out to the park to walk some laps and jog a bit (7 miles total today), and to the grocery store to get some stuff to make another pineapple upside down cake (they have a way of complimenting a "cruddy Dr. visit" very nicely). When I got back she was extremely worried that she could not urinate and was very tired. She was obsessed with this for almost two hours, said she felt fine but she just couldn't go. Sat on the pot at least (and literally) 15 times, but nothing. She kept drinking glasses of water and after a couple of them and some slices of pizza, she finally met with success. Phew! Think it was just in her mind all along, a delusion of time and reality. But I made sure to read up on urine retention online while she was ripe in spazzing out, just incase, and I will definitely be keeping an eye open for this continuing further.

Again today, had to follow her around with the walker to get her to use it. Very slow walking and also some strange out of character movement. She kept going out the front door and just standing in the front yard staring at things on the street and around the house. Every time she did this I kept a hard eye on her, then after observing her motions for a few minutes went out to talk to her about whatever had caught her attention outside. Granted, it was absolutely lovely outside today, but BB NEVER really goes out into the front yard (or the back yard even), so it was a bit odd and I definitely caught notice. We are REALLY lucky she hasn't wandered off yet, and my greatest hope is that it stays that way.

Speedy Has The Boot

Wednesday, Feb 17, 2010.

Sad to report it was not a good day for B today. Maybe because yesterday was busy. Mary, Earl's daughter, and her husband, Danny, came to visit for a few days. So yesterday was full of catching up and a lot of what I call "on" time for BB. But she also napped much of the day.

Today she was pretty darn out of it, both mentally and physically, and it seems to me that her condition is getting worse pretty rapidly at this point. She wasn't recognizing Gunsmoke or Bonanza while they were on and kept asking when they would be coming be on. She became belligerent with me when I replaced her empty box of fudgesicles (complete with chocolate paw prints) with a new full one. She started yelling at me, in front of everybody mind you, for not telling her they were in the garage freezer this whole time, as if I had intentionally hidden them from her and purposefully ruined her whole night as she was up desperately trying to look for them. Good times this morning.

She was very confused in general all day and slept a lot. Stayed on the couch more than usual, and just like yesterday, had forgotten to use her walker every time she was up. She needed that walker badly today, her physical condition has become VERY weak. I don't know if it is a result of recovering from the mini seizure last weekend, or because we have company in the house, or if it is just the Alzheimer's disease running its cruel course. But regardless, it's been damn startling to me to see just how weak she was today, I had to come to terms, once again, with the truth and fidelity of mortality. She can barely get up off the couch right now, and walking has become painfully tedious. She shuffled around the house for a half an hour with only one shoe on, and the other in her hand. When made aware of this fact she grumbled that she knew exactly what she was doing and needed no help, this was purposeful one shoe walking and... "just what are you staring at?!!!" There were a few times today that I was sure she was about to fall right over. I was on her heels with the walker all day, and eventually, after a full day's observation and walker following, asked her if she was tired. She said that she was more tired than she's ever been before in her whole life but didn't know why because she has been taking so many naps. She was so frustrated and confused and couldn't figure out why she felt this way. It made me realize that, realistically speaking, there aren't so many days left for her walking around and being mobile. She is just becoming too weak.

Update: insomnia strikes my being once more, the night stalker haunts the halls yet again, shuffling feet and strained breathing beating heavy like a dervish on slo-mo. She has been fiddling around loudly between the closet outside my room here and the bathroom for the last hour. It is now 1:45 in the morning. Just another day in the life.

Paula's in The House

Monday, Feb 15, 2010.

B's doctor appointment came and went. She had her carotid arteries scanned with the sonogram to make sure she is getting enough oxygenated blood to her brain. We are set to hear the results with Dr. Joplin on Thursday morning.

Paula came by the house today. BB remembers her from working with Eveline, and B also knows her husband, Ray, who drives the local school bus here. So she got the stamp of approval from the toughest critic in the world, and Earl and I think she's pretty good too. She can only work part of the day as she has two other jobs, but Earl asked her to start today to test out. She came back after lunch and cleaned the whole house, she also cooks and can administer pills when needed. It did become a little tense because BB became so comfortable with her she started giving her orders and telling her just how to do things (as if she were simply a maid), stalking her and watching over her shoulder and commenting rudely like she likes to do. But she will be coming back on Friday to help out again. This could really be a solution for the time being, a familiar person that can come in and help out as needed when I am gone. Let's keep BB positive about having her in the house, she really liked her today!

In other news, B is slowly rejecting actual food for sweets. All she would eat today was chocolate cake, key lime pie (which is delicious and many THANKS Aunt Becky), and countless fudgesicles. She gorged on them then flat out refused to eat dinner, though I served it to her anyway. She didn't touch it and proceeded right back to the sweets. She does eat okra at night. I have been making sure to cook it for her, and while she doesn't eat at dinner she will eat the whole bowl of it each night out of the fridge. Last night it was close to a whole pound of okra that she ate in the night. I guess this is balancing the sweets nutritionally somewhat, but it is still a very unhealthy behavior. She has a problem with compulsive eating.

I also asked her about bathing, and if she wanted me to run her a bath and she got nasty and told me to mind my own business. She has not bathed since I have been here to witness (since November 1) and for who knows how long before that. Not sure what to do about this. It is clearly a taboo subject for her. But another area in which she clearly needs assistance. In general she was very confused today. Words are disappearing more and more quickly. Sometimes it is really hard for her to communicate and she gets really upset a lot. She threw a little fit earlier because she ran out of gum and Earl didn't just go get it for her immediately. Sometimes she is REALLY nasty to him and he does not deserve it at all. When he did go out to get the gum she was suddenly sweet as pie. Very manipulative behavior.