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!