Tuesday, June 26, 2007

This should bring us all up to speed. Well, not quite.

So yesterday's post ended with my emotional reaction to being home. Tonight, I'm going to pick up on some of the highlights of the last two months as it concerns my mom and AD. It even feels weird to type that, my mom and Alzheimer's disease, because they're still not really sure that's the problem. Just a few minutes ago, I was standing at the kitchen counter where medical reports and doctors' evaluations were scattered all over. Mom and Brian were talking earlier tonight about the upcoming appointment with a doctor from the state regarding Mom's disability. A year has passed since she last sat before one of the state's doctors, and on Monday it's time for her disability status to be reassessed. But the thing is, all the reports I read stated that while AD is likely, there are so many other factors that a solid diagnosis is impossible. But I suppose for now, that's how the specialists are treating it so that's how I should handle it. Anyway...

Role reversal

One of the biggest things I have noticed while I have been home is how much I have switched roles with Mom. Here I am, the 21 year-old daughter, reminding the 45 year-old mother that she needs to eat lunch, and no, crackers don't count as a meal. She would probably never eat if not for Brian and I staying on her about it. And then there's time management...Mom now loses track of time very easily. Once she begins doing a task or an activity, three hours could go by while she's thinking it has only been fifteen minutes. Or maybe she wants to clean the house or get some other chores done - but it's too overwhelming for her to begin. So we make lists now. If Mom knows what she wants to accomplish in a day, then we sit down in the morning and write down everything she wants to do in the most logical order for her to do it, and I remind her to stick to the list.

I have learned to watch the subtleties of Mom's facial expressions, gestures, and physical habits to monitor how she's feeling. I can tell when it's time for me to take over puppy duty and keep Mocha from turning Mom into a neurotic mess. I can tell when she thinks she said something stupid, whether she really did or not. I can see when she's not telling me the truth when I ask how she's feeling. I know how to spot it when her mind starts wandering away, into "the land of alzies", as I overheard her say. I have also learned the best way to handle that particular situation. I used to ask her what she was thinking about, but I realized that only upset her because she can't really pinpoint what's on her mind. Instead of asking if she's okay or what she's thinking about, I now think of a question to ask her to get her talking about something ordinary. What did you think of that TV show we watched last night? Can you believe how much Mocha is growing? Have you seen the little girls from next door lately? Questions like these redirect her thoughts without making her feel like something is wrong with her for falling into a daze again. Speaking of questions, I have also realized that choice questions are much better than open-ended questions when Mom needs to make a decision. Instead of, "what do you want for lunch?" I ask, "do you want a turkey sandwich or some leftovers for lunch?" Open-ended questions requiring a decision are stressful for Mom, but giving her choices makes her feel more in control. Little things like this help her keep her dignity...at least, I hope so.

Sometimes I feel like I have a new role at home: instead of daughter, I am the mood-lightener. When Mom's having a bad day and Brian's stressed from work, I provide enough comic relief to get us through dinner with a smile. When Mom gets too hard on herself and engages in self-deprecation, I make cracks about the stupid thing I did or said recently to put things in perspective. For better or worse, I constantly feel the responsibility to keep things from being too serious or downcast. (Like anyone would ever guess that after reading this blog...I guess I've got to get the negative out sometime!).

The cold, hard truth

Some symptoms are very slippery creatures. It's hard to measure certain manifestations because they vary day by day and could depend on any number of outside factors. The cold, hard truth, however, is that Mom got lost on the way to church last week, and that is a soberingly clear indication that things are getting worse. And as much as I should probably process what I think about that right now, I can't. That's right, I'm going to cut this blog short because it's late, I'm tired, and I don't feel like dealing with it right now. Unhealthy? Maybe. But I'm not ready yet. Putting emotions into words gives them more life and power than they have when they're just vague, intangible impressions. Granted, putting emotions into words also helps their owner to sort through them and feel better. But it's one of those it-gets-worse-before-it-gets-better sort of things, so I'm going to tackle that one another day when I've got a bit more energy.


I'm going to be at a junior high youth camp until Sunday, so if you're counting on a resolution to this cliffhanger tomorrow, you're out of luck. But come Sunday night, if I am still alive after hanging out with a bunch of junior highers and a couple supposed adults who act like junior highers, then maybe I will continue telling the story as it unfolds. I always have been a sucker for telling stories. I welcome your comments and thank you for stopping by.

I suppose I should start at the beginning.

Welcome to my blog. I never really thought I would be a blogger...not a serious one, anyway. So how did I end up here? It certainly wasn't brought on by the best of circumstances. I'm going to blog because I'm not going to be defeated by this. Maybe, just maybe, by getting out all the stuff that's floating around in my mind, I will keep emotional breakdowns at bay. That would be a welcome change. And maybe in the process of telling my story, I can be of some encouragement to others facing a similar challenge. But I'm getting ahead of myself...

Forever in my mind

President Roosevelt called December 7th, 1941 a day that will live in infamy. No one who was alive during the attack on Pearl Harbor will easily forget the horror of that day nor the events which were set in motion as a result. The nation and the world were changed forever. I was still 45 years shy of making my entrance into the world at that point...but I have my own day that will live in infamy, forever seared into my mind. My life, and the lives of my family members, seem to have been changed forever.

It was a Wednesday in early February 2007. I knew my mom had a doctor's appointment that day, and I knew we were expecting some answers. By that time, we had been looking for answers for a year and four months...since Mom's first seizure. The doctors had thrown around all kinds of possibilities, but nothing seemed to account for the symptoms she was experiencing. Finally they diagnosed her with Antiphospholipid Syndrome (APS), a somewhat rare blood disorder. The APS had caused one or more strokes, which caused the epilepsy. But when the neurologist reexamined some imaging, he didn't think that all the neurological damage had been caused by strokes. So off to the stroke specialist she went. In the meantime, Mom had stopped working and had begun receiving disability, she had stopped driving, and she had seen more doctors and had more tests than we could believe. And her mom (my grandma) and all her siblings had refused to believe anything was wrong and decided to cease communication (but that's a story for another blog).

I got the call in the afternoon. I was in the beginning of my sixth semester at Indiana Wesleyan University. I skipped chapel that day...I skipped a lot of chapels that semester because the emotional weight of dealing with Mom's health proved crushing for a time. In as cheerful of a voice as I had heard my mom use in a long time, she said, "Well, he said it's Alzheimer's. Early onset, they call it, since I'm 45. So, that's it! Now we know! I'm totally fine with it. I'm hopeful. I'm excited." For whatever reason, I was numbed to the gravity of the moment. "Well okay then," I said. No reaction. No tears, no questions, no anger...just, "well, okay then." Really, I had already thought about Alzheimer's before as a possible cause of some of Mom's symptoms; it just seemed to fit. So when she told me, it confirmed my suspicions.

I got off the phone and wondered why Mom had sounded so cheerful. And I wondered why I didn't feel anything at all. I thought about Mammaw, my great-grandma, who had passed away two weeks earlier from the same disease. I thought about how Mammaw didn't know anyone and eventually stopped speaking and eating. Still, nothing. So I went to work, ate dinner, worked on homework...it was on my mind, but I was unaffected. Then my phone rang again.

It was a man from my student loan provider, and he told me that I had to start paying off my loan at the end of the month. Panicking, I listened to his courtesy call and then promptly tried to call Brian, my stepdad, to figure out what in the world was going on. I still had a year of school left; I shouldn't have to worry about loans. But Brian didn't answer. I called him over and over. I called Mom's cell phone, and still no answer. I must have called the two of them fifteen times. So I got online, looked at my account information, and called the 800 number to get it straightened out. After a quick conversation, we realized where the breakdown in communication had occurred and everything was fine again. Everything, except me.

Mom called back and asked what I needed. I started telling her about the courtesy call, and as I explained my frustration, I started to cry. "It was just confusing! And I didn't understand what he was telling me!" I sobbed. Then Mom asked, as only a mother can, "Is that what you're really upset about?"

I lost it. I cried and cried and cried, and so did Mom. We had both been tough and strong for each other earlier in the day, when all we really needed was to cry with each other. And cry we did. I told her how scared I was and how I didn't want her to end up like Mammaw. She told me that she was scared too...but that we'd face it together. I don't remember the entire content of that conversation, but I remember both of us telling each other over and over again, through the tears, "I love you so much".

Diagnosis...now what?

The remaining months of the semester can be summed up in one word: dysfunction. I sank deeper into the depression that I always seem prone to, and it was usually all I could do to get out of bed in the morning and keep from crawling back into bed in the afternoon. I skipped a lot of classes and ate a lot of junk food; I cried a lot and dwelled on horribly negative thoughts of the future. I praise God for amazing roommates, friends, and professors who helped me, invited or not, to keep my sanity during that time.

The worst part was being so far away. Granted, it was only three and a half hours, but the sheer fact that I wasn't at home was killing me. I didn't want to be at school anymore. I started counselling, which was very helpful. I learned that I was grieving, and that that was okay. I did learn, however, that there are acceptable and unacceptable ways to express my grief...unacceptable being skipping class and taking five-hour naps. Kelly, my counselor, kept giving me permission not to be perfect and that was huge. She instilled in me the importance of taking care of myself all the time, not just waiting to take care of myself when crisis strikes. Counselling was a highlight of that semester...I found validation for my emotions and I found someone who I could talk to without worrying about being burdensome or a downer.

In some ways, not being with my mom everyday after the diagnosis added fuel to the fire of my imagination. I figured that I couldn't tell how she was really doing over the phone and that Brian wouldn't tell me so I wouldn't worry, and I assumed that she was going downhill. Certainly some of her symptoms did progress during that time, but hardly to the extent that I made myself believe. I caused a lot of undue stress by letting my mind run away with me. Mom started driving again, and while I was happy for her regained sense of indepedence, I was worried about her getting lost or into an accident. Was Brian using clear judgment, or did he just feel bad about taking away her mobility? Questions like this plagued me.


The semester came to a close and I came back home. Funny, while I was at school I just wanted to be home. As soon as I got home, I wanted to be anywhere but here. I had to go through a period of adjustment to how Mom had changed, and I didn't like it. I felt trapped...whenever I had emotional reactions at school, I could express them whenever and wherever I wanted. The dorm was a safe place to let it out. When I got home, I couldn't express my emotions at home openly for fear of hurting Mom. I was forced to bottle it up until after Mom and Brian went to bed, and then I could cry as silently as possible in my room. And as my stepmom once told me, "No one should have to cry alone." I have done more than my fair share of that during these last few months. In fact, that happened just last night (more in a later post).


So there is the beginning of my (and my mom's) story. I know it's long, and if you're still reading, I applaud you. There is much more to say, especially about the time I have been home, but I am getting tired and should probably save that for another day. Just one more thing before I call it a night...

You may be wondering where I came up with the name for this blog, "Element of Blank". No, it's not a play on the "blankness" that can come along with AD. It's from an Emily Dickinson poem:

Pain -- has an Element of Blank --
It cannot recollect
When it begun -- or if there were
A time when it was not --

It has no Future -- but itself --
Its Infinite contain
Its Past -- enlightened to perceive
New Periods -- of Pain.

Sorry, I know it's a little dark. But sometimes there's beauty in darkness, beauty in pain, because there's truth in it. Right now, that Dickinson poem is truthful to my life. I hope it's not too truthful to yours, but if it is, then you've just found another companion on the journey. I welcome your comments and thank you for stopping by.