How It Started, or, Dreaming Alzheimer's

I dream about my father often.  An acquaintance who's supposed to know tells me this is a good thing - most people don't dream about a deceased parent so soon after the death.  She tells me it's a sign of integration or wholeness or being well knit or whatever the high-value outcome is supposed to be.  I wouldn't know - I just process the stuff.

The dreams come in three main flavors.  My father is very young - the way he would have been when I was a small child.  He's whole and energetic and maybe a bit rash.  Or he's on the cusp of Alzheimer's and the problems are just beginning to show.  Or he's all the way in and he's wretched and decrepit, the way he often seemed on this blog.  In one of the latter type, he literally clung to my back, like Anchises.  Doesn't take a genius to figure that one out.

In some of the dreams I'm alone with him.  In others my mother is there and able to help out, or not, depending.  I always have mixed feelings about her being there - I'm grateful for the extra pair of hands but I worry about the impact on her, as I would have if she'd survived to see what happened.

Here's a typical dream of the second flavor.  We're in his apartment (my childhood home), which is somehow also my current apartment.  My cats are there, and one of them has taken to urinating outside the litterbox (as happened last summer, when I was splitting my time between the cat's MRSA infection and the nursing home search).  I check the litterboxes, which my father has been taking care of (as he did with his own cats - it was one of the last household responsibilities he was able to maintain).  I find that he's put just a small amount of litter into each litterbox, then filled them with water.  No wonder the cats don't want to use them.  Why would he do that?  Looks like he's beginning to show signs of Alzheimer's.  I'd better get him checked.  It's going to be a lot of work to deal with this.

As in fact it was. 

Why the dreams?  Beyond the obvious answer (I'm working through the experience over and over and over and over), I don't know.  I don't know what role the dreams are playing - there's no real sense of progress, and they seem like churn.  Maybe it takes longer for them to thrash themselves out.  I suppose I'll find out eventually, since they don't seem to be going anywhere and neither do I.

I'm reminded as I think about the dreams that one of my first recorded observations about my father's Alzheimer's came in the form of a note about a dream.  For years I've kept running notes on things - they're sort of like this blog, only less presentational, and therefore better.  The note in question was written in the early summer of 2002.

I seem to recall - and the evidence bears this out - that he'd been showing symptoms for a while by that point.  I think the earliest problems cropped up sometime in 2001, or maybe even earlier than that.  I can't be exactly sure - I was caught up in other concerns at the time and didn't bother writing them down.  But by the middle of 2002 his issues had been going on long enough that they'd worked their way into my notebooks and into the dream material too.

The first symptoms were speech problems.  At first he'd forget or make mistakes about proper names.  After a few months the problem extended to nouns in general.  At some point I must have done some research because I taught myself the words anomia and aphasia.  A couple of years later I'd tell people (and sometimes I'd tell myself) that he had anomia or aphasia, and that this indicated some kind of cognitive problem, but it clearly wasn't Alzheimer's.  I believed that at the time.  Once or twice I told doctors about anomia or aphasia and they got annoyed because I wasn't a doctor and wasn't supposed to know words like that.

But I'm getting ahead of myself.  In the summer of 2002 the problem was just present enough, and just persistent enough, that I was beginning to think about it consistently.  You can tell because it suddenly appears in my notes, and one of the notes is about a dream.

The dream is pretty classic stuff.  At the time I was working as an executive in a big communications firm.  The firm was run by a chairman, who was known to his inner circle as "The Chairman."  There was an aura of fear about him.  Sometimes I wonder if that wasn't just me projecting, but I don't think so, because when he visited the office or joined in a presentation you'd see ordinarily confident senior people suddenly get radically anxious and say things like, "We can't have a meeting without a PowerPoint - The Chairman doesn't like it that way!"  One day a very senior person had a near-meltdown on the intercom - "Jane Doe, call 5555!...  Jane Doe, call 5555!...  Jane Doe, call 5555 NOW!"  The Chairman needed a Diet Coke and it wasn't coming fast enough.  My own take was that that was an odd way to run a communications firm - with a fear culture at the center.  You'd think you'd do better if people were relaxed and could actually exchange ideas.  But things were the way they were.

In the dream I was in my parents' apartment, which was also the offices of the communications firm.  There was a reception, and my parents were going to meet The Chairman.  An anxiety dream?  Why, yes.  I think it was.

There was something I needed to check - a newspaper article that was appearing online, or somesuch.  So I had to leave my parents and The Chairman alone with each other.  Needless to say, I wasn't at ease.  But I came back to find them all chatting amiably with each other.  Side note to self - maybe the fear thing was my own projection after all.

There was only one problem.  My father kept wanting to refer to the firm's biggest client, a communications firm that was known at the time as SBC.  It had once been Southwest Bell, and today, after a string of mergers and acquisitions, it does business as AT&T.

My father kept referring to it as "SUV."

I tried correcting him and telling him about the history of the company, but he persisted.  The Chairman seemed to understand.  He wasn't bothered and went on with what seemed to be a very genial conversation.

I go on at length about it because - in spite of the fact that this is a dream narrative - it's also the best single record I have of how his symptoms appeared to me at the time.  It didn't seem to be a normal kind of forgetfulness.  He wasn't word-searching.  There was no hesitation.  He found a similar word - a homonym - and dropped it into the conversation without noticing that anything had happened.

I mention that not to get anyone anxious - I do similar things myself these days, and by themselves, signals like this aren't necessarily signs of Alzheimer's.  It's just that I"m talking about his specific case, and trying to be accurate.  The noun substitutions represented a break in the pattern and, as it turned out, they were the first sign that everything wasn't quite right.   

In my notebook - the entry is for Thursday, June 27, 2002 - I wrote, "Apart from a couple of obvious things (my father's new problem with proper names), don't know what it means.  Will have to see what comes next." 

As, in fact, I did.

The note, now that I look at it again, suggests that maybe the timeline I laid out earlier in this entry was too aggressive.  I wasn't yet referring to problems with nouns, only to problems with names.  So it may have been a little later that the problem got more entrenched and he started referring to his toothbrush as "the whatchamacallit."

Another point that needs correcting - recently, when I've thought about the dream, I've remembered it - and my note about it - as the first record of my father's symptoms.  But that's not the case.  A little over three weeks earlier - on June 5 - my notebook entry records a conversation with my mother, and includes the following: "I asked about my father's forgetting nouns, and suggested she bring it up with [Dr. R] and let him decide what if anything to do about it, and she said she would."  So there's an earlier description (a broader one, too - it refers to nouns, not just proper names). 

The two notes together show that at this point, eight years ago almost exactly, I was beginning to get quite concerned.  The fact that I was willing to bring this up with my mother tells you that.  She'd had a difficult winter (the 20th year of her breast cancer) and that summer, she was just beginning to show signs of the final breakout that would lead to her death the following January.  Under those circumstances I didn't like adding to her list of problems - unless I really felt I had to.  Apparently I did.  And then there's the anxiety dream just a couple of weeks later.

So there we were.  And there we are.  The record is ending in dreams and it started with dreams.  It also started with nagging concerns, of course, and with a sense that the problem might have been innocuous or maybe not and you didn't know what to do about it.  That sense - the nagging questions (am I overreacting?  Am I underreacting?) - played out over and over again during the whole nearly-eight-year arc until he died.

It's possible the notebooks include some other, earlier fragment of a symptom.  I haven't found it yet but I'll try. 

There's certainly enough detail to come after, and I'll be mining that soon.

Comments

[Amy]

Thank you for reaching back and sharing this. I wish I was eloquent enough to say more. Right now I'm just in the dark days of dealing with how sick my mom is. Your blog has been a really helpful resource to me. Peace.

[julie]

Hi again Alan. I'm so glad to see you back at the blogging. I'm sure you required a little respite from thinking all things Alzheimers all the time. But as you can see, there is still much to be done and said in your ongoing battle with the disease, even though your father is now gone. I'm glad I came back to check. Carry on.

[dementia care]

I really like this article, I'll definitely share this. Prevention is very important especially if you don't want to have Alzheimer's.