The life of a caregiver is a sea of change in the midst of a world that is relentlessly the same. Our world has essential elements that are unchanging: toileting, bathing, feeding, washing, followed by toileting, bathing, feeding, washing followed by... ad naseum. Within that, the things that change are especially jarring, because they consume time or energy, both things we have little of and value highly.
I arrived at this blogsite to do a long overdue update about a month ago, only to find out that my template had vanished. Well, this is its replacement and it doesn't work so well, and I don't have time to fix it just yet. Stay tuned.
It's been a while.
Far too long since I've seen my mother break her way through this awful disease. Tonight she was here and it was heavenly.
We talked about how we are the lucky ones. The ones who are loved. Loved by our parents, loved by our siblings, loved by our children. We talked about how mysterious and immortal love is.
Our souls caught the wings of happiness as we listened to my daughters laugh, and laughed with them though they didn't know it.
She was here, and I was her daughter and her comrade and her sister.
I was one of the lucky ones.
This first post has been extremely difficult for me to buckle down and create. It's not that I have any difficulty writing out my thoughts - quite the opposite, in fact.
I'm the type of person who keeps a virtual journal saved in an obscure part of my computer under a ridiculous name. And, lest someone stumbles across it, it contains no names and is written in prose style rather than the typical "dear diary."
Frankness; not one of my strengths.
I had a revelation a few weeks ago, that helped me to understand my grandmother's brain better. It was such a strange feeling... even after I'd realized my imagination had taken over my reality, I couldn't shake the feeling that something was going on.
Allow me to precede this story by explaining that my grandmother often needs to get up in the middle of the night to use the bathroom. Thus, I am quite used to waking up during the night, and am typically quite sensitive to strange sounds.
One night a few weeks ago, something awoke me around 5:am. I still don't know what it was, as when I got up to check the house (I have a saviour complex; I believe I could single handedly fend off a burglar), everyone was still asleep.
All I know for sure is that after I awoke, in those few seconds when you're still trying to figure out why you're awake, I distinctly heard the sound of the front door being discreetly opened & closed. Now, I used to work at Starbucks, so I would often make this very noise when trying to get to work at four in the morning - so I know it well. But as I already noted, when I got up to investigate, the other three residents in the house were fast asleep. Not only that, but the deadbolt was thrown (a sound which I hadn't heard).
It wasn't until I got back to bed that I was confident I had imagined the noise. You see, as I was crawling back under the covers, I remembered that before awaking I'd been dreaming a sequel to a dream I've had before (sadly, this isn't strange for me) - and while the dream in and of itself isn't important, I realized that the door opening and closing was just one of many fragments of my dream that I still felt were real. even as I was pulling my covers over myself, I would've sworn that my hands were still wet from ruffling a friend's freshly-showered hair.
The point of all this is that while I have the sanity-synapse working to tell me I'd imagined it all and that the door hadn't really been opened and my hand wasn't really wet, my grandmother doesn't. She has an over-active imagination (always has), but the part of her brain telling her that what she just saw/did or heard/said was just her imagination doesn't work anymore.
Most of the time lately when I look at my mother, I want to cry.
I want there to be a place where this stops for her; a place where the sun breaks through the clouds and the greens are greener, the birds are busy with their odd little bird songs and the smell of the earth is fresh and clean.
Her eyes can see, but her brain doesn't know what to do with it. The range is about 18" away from her face. Her ears can hear, but her brain takes minutes to process what she hears, and again, it mostly needs to be inside that 18" periphery. Hmm, not periphery... it actually needs to be in front of her for her to understand it.
I expect the zone to get smaller as time passes. How quickly or how slowly that occurs is probably anyone's guess. H and I were talking about that as we drove home last night.
Even as her world shrinks, there are moments, hours, maybe even a day, when everything is almost normal. Her comfort in that is palatable even though she doesn't actually speak of it. Just as suddenly and unpredictably as clarity occurs, it disappears.
The words she says most often to us are still, "I love you."
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