June 18, 2016

It’s been awhile since last I sat here, in the wee hours.

It will be difficult to return to the habit of getting up so early, but is seems to be the only reliable time to write. And then only if I hide back here in the porcelain room. This morning, getting up early was simply due to surrendering to the fact that I wasn’t getting any sleep. Mom was already on the prowl at four am when I made coffee, and she would be up now wanting breakfast if I were out there. Mom is going through a period of lucidity that has me uneasy. She tried to tell me last night, again, that she didn’t need me to run her bath for her-she can do it herself. I mumbled something about it being no bother, and she threw up her hands, turned with a dramatic sigh, and trudged her way to the bath. The problem there is not just that she doesn’t do it, (I remember the seven weeks it took to get her to  bathe when she first came home) it would hurt her feelings if I told her so. When she’s lucid like this, she doesn’t believe that she is or ever was, forgetful. And she’s a little  too alert to discuss the matter of moving. When she’s on her game, it’s impossible for her to believe that she needs any help, at all. In this mood, she would be upset at the thought of moving into long term care. With two trips to Seattle and a couple of appointments, this next week would be no good for touring facilities, so we’ll aim for the week after to get started on the search.

If my sister were here and saw her this aware, she would be certain that I am railroading Mom, or gaslighting her, or something selfish and nefarious. Maybe I’m being paranoid. The pain in my neck and back has flared up, and it makes everything seem worse, perhaps, than it warrants. The pain is as bad as its ever been, this morning, and on top of it all my gut feels bruised inside from all the bloating. I don’t really expect any great revelations from the procedures this week, just ruling out another thing that isn’t the cause of my grief. I wish I could crawl back into bed and try to sleep the day away, but I have to take the truck into town for an oil change, and drop it off at the mechanics’ for a tune up. Mom has a caregiver from nine to five, and hopefully whoever comes will be cool with me leaving the dogs here while I go to town. You would think that they couldn’t get into too much trouble in the back of the truck, but Newton has managed to chew up the wiring from the truck to the canopy, and has peeled the felted headliner about halfway off. He is a rascal, through and through. Adorable, but dangerous left alone.

It is nice to sit here with my boys again. It feels right to be surrounded by furry warmth as my thoughts wander across the page. My words are more soothing when I can reach over and caress a silken ear, or scratch gently behind an elbow as I try to untangle the latest conundrum. Animals have always been my touchstone, far easier to understand than most humans. They somehow make sense, in a sometimes senseless world. I learned at an early age that non-verbal communication is by its very nature honest, and to look beyond words to find the truth. I believe its what led to my love of working with non-verbal patients. Not only those who are stricken by dementia, but those who are trapped in their bodies by stroke or some other disease like Parkinson’s, who have lost their voice.

With dementia, simply playing along with their confabulations while gently guiding them usually works. With stroke patients and those who have lost their voice but not their minds, communication is more of a challenge. They don’t want to be coddled or cajoled, and they certainly don’t want to be patronized or treated like children, although that is unfortunately often the case. What they want is to be understood, and that takes careful thought, respect, and keen observation. I miss those challenges even while faced now with others. With Mom, at the moment what I describe as lucidity is just another confabulation, one that she adopts whenever she feels that her abilities are being questioned. She’s so good, in fact, that if you didn’t know better you would swallow her act whole. But when she tells people that she lives here alone and always has, or that she regularly takes walks all the way to the end of the road and back, or that she was a nurse-in the Army…you can spot the places in her narrative that were blank, now stitched together in a way that she can somehow accept. One moment she will insist that she bathes every night, and the next she will claim that she never takes a bath in the evening-and deliver both with absolute sincerity. Soon a new leg of our journey will begin…

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