Meditations on a Parent with Dementia

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3/28/11 Update: I am retroactively making this blog post an Alzheimer's Blogging Competition Entry. To enter the competition, donate $1 or more, write your post, and email the organizers. For more details, see the Disabled Shop Blog.

For those of you who don't know, my mom was diagnosed with vascular dementia last October. I hadn't told all that many people until recently, but I bet many of you who read this are my family members, so I'm pretty sure you're aware of it.

But for those who didn't know, I'll answer the FAQ I've noticed from telling people in person: She's only 69, not as old as one might expect, for dementia. It's probably because of her heart problems, since it's apparently reduced blood flow to the small blood vessels in the brain that's causing her difficulties.

I've played with the idea off and on since the diagnosis of blogging about it. There's just so much that feels odd about the whole situation to me. I suppose it comes of having a new experience, never lived through before, which is fortunate. I'm glad it's my first time living through a parent having dementia. Sometimes I feel guilty that I can be so detached at times -- not so much caught up in the event itself, or concern for my mother, as in writing in my head about my own reactions and emotions, and even writing about writing about it!  But it's not necessarily as bad as all that -- I think writers can have a tendency to sit back from themselves and observe moments of grief, like C.S. Lewis' A Grief Observed, although I won't compare myself to him in any other respect. Writing is how writers make sense of the world, and we have to observe to write.

Yesterday the church I work at had a Mass for Alzheimer's patients and their families, and I was able to attend part of it. Thinking about going, that morning, is what made me start to take notes on my voice recorder as I drove to work, about actually going ahead and writing this post, and about what I wanted to say. I'm glad. Whether it's a helpful thing to read or not, it's very good to get it all out and off my chest. It was a beautiful service, too. Maybe next year I can bring Mom with me.

I must make the disclaimer, though, that this is my own personal reaction to her dementia, and it doesn't necessarily share anything in common with that of my siblings. Every person is different, and every relationship with a parent is different. I cannot speak for them. (Or for you, perhaps I should say, if you are the ones reading this.)

While I'm doing disclaimers, I should explain that Mom is still in pretty early stages. She can still recognize people, her memory isn't all that bad. It's her processing speed, her words, and her decision-making that seem to be most affected for now. She gets confused easily and has trouble telling stories. Ah, those are understatements. Everything is much more so than what would first come to mind when you hear a symptom like "confused easily." She can be left alone, but she couldn't live completely on her own. Her declines seem to come in spurts; she'll seem the same for a while, then get worse really fast, then stabilize again, and so on. I'm not around nearly as much now that I'm not working for Jeff anymore, but I know that's how it was.

Now, disclaimers and explanations aside, time for my couple observations. Maybe my first observation should be about that "meta-observation" I've already talked about, that sitting back and writing in my head. In a more sinister form, I have a tendency (in everything, not just this) to secretly want everyone to know, to understand and pity me. I want to be the hero of my own story. It's... human, I suppose. Especially growing up in such a big family, without much attention. I've come to peace with the fact that a certain amount of desire for attention isn't sinful -- we all need love, and no one can love without giving attention. It's okay to desire love, it's just important to be more focused on giving love than on receiving it. That doesn't mean one can't think about receiving it at all. I think. And attention seems to be the same way.

It's understandable too, as a writer. Framing your life as a story may not be a bad thing; so long as you realize that you aren't the hero of the story, or even a hero at all, necessarily. So I try not to take a sick pleasure in pain (not really an issue in the most painful moments), and remind myself that yes, this is a big deal; and yes, it's okay to want your friends to know.

I suppose my second observation is that pain comes and goes in waves. Sometimes I sincerely feel fine, and it doesn't seem difficult at all. It's the way things are, the way things have been, and putting it into words feels melodramatic and unreal; not an actual reflection of my life and my relationship with my mother. A side-effect of gradual change, perhaps. In fact, when my mom and dad and sister first got back from the neurologist and I heard how it went, the predominant emotion was relief; finally, we knew what was wrong, what to expect, and someone had taken her seriously. This story certainly didn't begin at the time of diagnosis, though diagnosis made the story easier to tell, easier to frame in one's mind. It was an answer to prayer.

Other times I don't feel fine at all. Very soon after that relieved, calm moment when I first found out, I decided to look into descriptions of vascular dementia online. That was a mistake. I freaked out, and no matter how often I've started writing this blog post in my head, I haven't thought much since then about what Mom's dementia could look like in the future, or how it might progress. Steadfastly ignoring the future might sound unhealthy, but I'm not sure.

You see, a diagnosis is helpful in terms of what to expect. You stop suspecting yourself of going crazy. Even though I knew before that neurologist appointment that something was wrong that my mom couldn't control, I've been much more patient in my interactions with her afterwards. It's so much easier to be patient. Simple interactions now seem overwhelmingly sad, but at least I don't get mad at her. Normally.

But on the other hand (and this is where I come back from my tangent to talking about ignoring the future), in some ways it's not helpful at all, because even now no one can tell you what to expect. My brief stint looking it up online told me that very quickly. It just varies too much, from person to person. There are averages, but no one can really tell me how much longer my mother is going to live, or what's going to happen in the meantime. Apparently the decline is faster (on average) with vascular dementia than with Alzheimer's, but that was about as definitive as anything got.

So... I could play out painful scenarios in my mind, but maybe (yeah, I'm not quite sure) I'm glad that my brain seems to be shying away from that. I can think about everything else relating to her dementia, in the present and in the past and in every aspect of my own reaction to it, but the future... I think maybe one thought, then flinch away, like the instinctive reaction to testing a broken bone. All I know is that I want to have kids while she can still recognize them.

I suppose... When I was a kid, I think the very first time I heard about Alzheimer's I thought it sounded like the worst thing that could happen to a person. It seemed incredibly sad. I wouldn't say the worst, anymore, but it still seems tragic. Maybe that's why I won't let myself imagine it going that far with my mom. And maybe that's part of what makes it seem so unreal right now -- yes, it's hard, watching her seem to... lessen... but it's not yet what I would visualize, thinking of dementia or Alzheimer's. The worst hasn't happened yet, and I can't quite make myself believe that it ever will. Though the possibility still has a weight, to nag on the edges of my brain.

One aspect of pain coming in waves is that, when I'm already sad about something else, those are often the times I start thinking about Mom more, and I become sadder. It's like it's just waiting there, in that emotion, for me to join it and think about it. Which may be a good thing. Intermittent grieving... it may be too much to handle, to feel the full weight all at once, or all the time. If gradual change is what gives me the ability to not always feel pain, all the time, at the loss of the person my mom was, and the relationship I had with her, such as it was... then I'm glad of gradual change. Even if it means living with it for longer. I think.

I haven't been very close to her, not for a long time. But she is still my mom. The exasperation I first felt, when her symptoms were first appearing and sometimes seemed exactly like how my mom had always been, only more so... well, that exasperation shifted to guilt shifted to sadness. I suppose I grieve the impossibility of ever having a deep relationship with her, now. I already knew I couldn't, to some extent, but this made it more real. At the same time, I do have a chance to change in how I respond to her. I have a chance to be patient and loving with her... in the extreme, actually. There's a book I plan on reviewing later, After You Believe by N.T. Wright, which talks about the gradual formation of virtue, and how it takes practice for something to become second nature. Well, if dealing with a confused parent isn't good practice in developing patience, I don't know what is. And... it's a good thing, to have that chance to deal kindly. Not that one can "make up" for earlier, impatient times, but it's still good, I think.

And that's all I have to say about that. For now. I'll keep you posted.