Sometimes you get right into the middle of something and you know you need to talk about it but you don’t know whether to just start from where you are or go back to the beginning, the place where you didn’t know, at the time, you had begun. If you stew over where and how to begin, you are more likely to stall out and not begin at all.
But I have to do this, whether I miss some of the beginning pieces or not. So, I’m going to launch from yesterday. Or, actually, day before yesterday.
She sent us an email Tuesday, cryptic and ominous. She said she knew we had not read the booklet that the Home Health Nurse had left behind and that she had been reading it and found something she wanted to show us. She requested us to stop by after work one day this week. My husband and I both knew it was probably nothing but we promised we’d respond immediately to any need, now that we have taken her car away from her. We called and made a date to take her to dinner.
The conversation, on the way to the restaurant, was a complete playback of the events of Tuesday, that we had already both been told on the phone individually, except that she had already forgotten about the “important” thing she wanted to show us. We also got a nice twenty minute discourse, color, shape, size, BOGO coupon (she thinks), on a new snack cracker she wants to buy four boxes of - tomorrow. She just knows the great grandkids are going to love them.
Dinner went okay except I noticed her struggling to figure out what she wanted to order. Frankly, I am also a bit overwhelmed by that restaurant’s menu, it’s like a small book, so I completely sympathized with her confusion. I finally coaxed her toward chicken fingers, broccoli and fried apples. Then, while waiting for our food, we got a litany of minutia, things we have heard so many times, my eyes begin to water at the first words of the now memorized stories. We muddled through dinner and took her home. We sat down in her hot, dark living room (she keeps the blinds tightly closed and within minutes I find I am gasping for oxygen in there) and continued without skipping a beat on the minutia train when my husband, dying of curiosity, asked her to show us what she had called us to see. She had to think about it and, with some encouragement from us, like playing a game of Password, she remembered and got up to go get the book from the kitchen.
I had already suspected what it was going to be because I am beginning to see the patterns now. If a topic lodges itself in the front of her mind, it stays on a loop and she gets stuck on it long after the issue has died. Anything that sparks the topic will get her back into the loop. I have to admit I take no pleasure in being right on this count. I think a part of me was still hoping she would have a totally different thing to point out. Actually it was even worse. She found the page that the Home Health Nurse had taken the time to explain about the cost of each visit, in the event that Medicare wouldn’t pay. But the nurse assured us both, I was sitting there at the table the whole time, that Medicare would pay for the doctor ordered visits and this information was just a legal obligation for her to share.
A month ago, the day after this visit, she was sitting at the table and had opened the book to the page with the number circled, just as the nurse had left it. But she had completely forgotten what the nurse had said and immediately called my husband, all distraught that the visits were going to cost $165 and she wanted us to call the doctor and cancel the nurse. But, unknown to her yet, the nurse had already called earlier and said that until there was something more specific that needed Home Health attention, she wouldn’t be able to come out anymore because Medicare had very stringent criteria. So, we told her that she wasn’t going to have the nurse anyway, at least not yet. We assured her that even if the nurse did keep coming out, she wouldn’t have to pay for it. But, again, the nurse wasn’t coming out anyway. Anyway! Anyway! Sheesh!
But all that time had passed and Tuesday she spotted that circled number and it disturbed her all over again. Back on the loop.
I’ve been told it isn’t good to correct her or tell her that we have already covered and put a topic to rest but I couldn’t stop myself. I said, “Don’t you remember that we already talked about this...?” She instantly replied, “Yes, I know we talked about it.” She then continued reading all of the potential side effects of the medicines she no longer took. My husband told her that she didn’t have to worry about the side effects because she no longer.... She seemed confused but maintained that she just wanted us to know that she had not had those side effects even though she had been taking the medicines for twelve years. There was a split second where I thought I could see her struggling with this illogical and convoluted concept and then she plowed ahead, resuming her determination to inform us, just so we would know. What, I have no idea. This time I just could not connect the dots.
Free fall - when this happens I am in complete free fall. There is no logic, all the pieces are disconnected and I can’t respond. What good would it do anyway? I can’t stop this process, but even worse, I can’t predict how long it will take to hit bottom where she can’t even wipe her own bottom or dress herself or recognize us anymore. But this stage, this gray area where she is still, at least in part, in a state of semi-conscious control of her cognition, this is the stage where the great unknown still looms ahead like a ghostly dark specter. Each tiny red flag, not just missing words and topics in looped playback, but bigger things too, like forgetting what temperature to set her thermostat to get the air con to stop blowing, things like forgetting that she already had three boxes of coconut popsicles and didn’t need four more. All the dozens of little things, the sudden paranoia about someone stealing her driver’s license, that individually would not raise a single doubt but together, and compounded, add up to one overwhelming, dreadful conclusion: Alzheimer's. It is definitely worse than the bladder cancer diagnosis.
They say AD can’t be officially diagnosed at least in the early stages and sometimes folks can slip by for a long time without causing concern. One of the techniques for diagnosing is testing and interviewing the caretaker or loved one to ferret out strange behaviors that are often quite subtle and only noticeable by someone who knows the victim very well. It is in this vague in between stage, not really fully there and engaged but not really gone either, this place where the bits and pieces are just leaving, dropping off one at a time, falling off like dust, this is the place that I dread knowing it will take the most effort, compassion, and an extra measure of grace and patience. You tell yourself, she isn’t herself, but she still is herself enough to cause others, casual observers, to wonder what the big deal is. She’s just old, she forgets some things, she repeats herself, cut her some slack, she’s 85 years old for crying out loud.
But you know her so well, you know that this is not just old age, you know she is in major decline, mentally and physically and right now, you aren’t sure what tomorrow will bring, what new crisis real or imagined, or how hard this will finally get and what, if anything, will be left of your own mental health when it’s finally over.
AD is often referred to as “The Long Good-Bye.” How ominous is that? We all die sometime, from something. But what could be worse than the mind going before the body?