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…


November 5, 2015

Even the rain is lacking in enthusiasm this morning, complementing my mood.

We are in the normal winter pattern of showers and occasional sun-breaks. I sometimes feel guilty this time of year, as storms seem to pound the bejeezus out of the rest of the country. Not that we are completely out of danger where storms are concerned, the season has barely begun. But winter highlights the advantages of living in a temperate climate. As long as the Olympic Mountain range exists, we are blessed by the rain shadow. Most storms either break up after hitting Hurricane Ridge, or pass around and over us, causing havoc farther east. Regardless of what Deniers may say, climate change is not only real, it’s here. And just when we need to pull together as a nation, the current election season shows us to be more fractured than ever. Instead of the shenanigans of The Donald, we need sober, dedicated minds to figure out how to survive the mess we’ve created. It lends a sense of poignancy to the serene beauty of my home, knowing that millions of people will never get the chance to experience its beauty first hand. Some will never explore the natural world at all, never see a world that isn’t steel and concrete-and lacking that, never appreciate why we must save it. And here, in Nature’s nursery, there is a tendency to forget the plight of the rest of our world. There’s an ‘I got mine, now get off my land’ attitude amongst some that disturbs me somewhat. It is an honor to live in paradise, but honor always comes paired with responsibility. I consider myself to be a steward of the land I live on. I’m not saving it for myself, but for the future. I want to plant trees and gardens for my children’s children to play in, and their children after that.

The last couple of days have been a challenge. Yesterday I forgot to set my alarm, and didn’t wake until six. Mom was up and active, making writing impossible. I seem to be having a hard time reestablishing the writing habit, but I am determined to slog on. On Tuesday, I had about six or so short errands to run. It was National Sandwich Day, so I suggested to Mom that we go to town for a meal at Subway. She was delighted, and started the litany of ‘Is it time to go yet?’ at around ten am.  It makes it hard to get ready when she’s in my face, tongue hanging and tail wagging with excitement. So to speak. That could be why I forgot the pile of paperwork that Kevin needed me to bring to him, although I am perfectly capable of forgetting things for no apparent reason at all. I didn’t realize that I had left the papers until we were all the way in Port Townsend. We decided to just grab the sandwiches and go back for them. We got to the Subway, and there were almost a dozen people waiting in line, so we settled for McDonalds. On the way back to the house I managed to get behind someone who insisted on going ten miles below the speed limit, on a road where you can’t pass. Then, just before we crossed the bridge to Indian Island, a golden lab dashed out in front of us. I managed to hit the brakes, but still sent him rolling. I pulled over, but the dog ran off-at least he was using all four legs and I didn’t see any obvious wounds. But the look of bewildered pain in his eyes as he looked back broke my heart. I can only hope he’s okay. We got home and ate our ‘meal’, let Kevin know what had happened, and made our way back to town. I still managed to get all my little errands run except one. We wearily left town for home the second time, and as luck would have it, found another slowpoke to follow home. It was a long day. Not so long a day as yesterday, though.

Mom has been on a new medication to try and help her to sleep at night. It also has an antidepressant effect, and it seems to have perked her up considerably. While that should make me happy-and it does-it also makes dealing with her a bit more frustrating. She puts that perky face right up in mine a dozen times a day, looking for some entertainment. I can’t get a cup of coffee or go to the bathroom without her wanting to know ‘what’s going on’. Yesterday she seemed to be trying to put the house back into the same conditions I found her in a few years ago, living in a dark house with one tiny pool of light over her table. I find the lack of light unbearably depressing. She would systematically turn off all the lights in the house, and as soon as she would go to the bathroom, I would turn them all back on. For someone with Seasonal Affective Disorder, (SAD) lack of light is a real killer. Then she started in again on the pets, trying to lay rules for where and when they could play. When she kicked Einstein in the face because he ‘annoyed’ her, I took the dog and fled to my room, where every light was ablaze. As I sat there in exile, I pondered the ridiculousness of being forced to live in my room, while in my own home. Living with dementia tends to turn everything upside down and inside out. I’ve been battling a sore throat for the last few days, draining my energy and stealing my ability to cope with the current demands. Both Mom and the puppy kept up a continuous whine that made me desperate for escape. I am hoping for a better day today. It’s almost time for me to go out and start the day, and still no sign of Her Royal Shortness. Kevin is just beginning to stir, and I actually had time to myself this morning, to write. All good omens, I hope for the best.