Skip to main content

The Struggle of Relationship With ALS

Seven days since my husband has been here. More of his petty need for control.

When last I saw him, I was crying and throwing a fit. Well, no small wonder you might say or think. We would leave as well. But, consider this...

My husband and I have been together a long time. We have gone to counseling a few dozen times and, supposedly, know our issues. As adult children of alcoholics, we share some of the same dysfunction. Occasionally, we get mired in poor communication conundrums. Both sitting on hurt feelings, thinking nobody understands. He retreats into slothful behaviors. Sitting and reading, sitting and watching television, lying on the floor sleeping, and, generally, ducking all Responsibility.

Most times, I'm the one to get us back on track. I've been the one to offer the olive branch. I've had to drive out to Packwood from Maple Valley, and, physically, pull him out of his funk. Suggest solutions and coddle his hurt feelings for the sake of our marriage. But, I cannot do that anymore.

I am, physically, unable to run after him. I cannot call him on the phone and reassure him that I love him or, calmly, explain my viewpoint and offer common ground. I can only sit with my own hurt feelings and hope he comes back around.

Or, should I even want him? He's been my primary source of stress since I've been saddled with this diagnosis. He has been, alternately, sullen and sweet. Confusing me at every turn. Taking charge of my care in the early days. Painstakingly, sorting my supplements and medications, then raging at me for setting my iPad timer so I would not forget a dosage. When I'd awaken early and go through the struggle into my swimsuit to be ready to be picked up for water aerobics and my ride wouldn't show, He'd come to my rescue and drive me to the pool. I'd be so grateful for his generosity, then he'd complain throughout the trip.

Comments

Popular posts from this blog

I Remember...

I remember catching fireflies,  putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field.  That field was my...

You're Not You...Me, Too!

1 Wow! Spot on...In so many ways.  Granted I wasn't in the the same socio-economic circumstance, and neither do I play piano but I was passionate about knitting and I lost the ability to engage in my passion practically from the onset of the ALS. Symptoms first manifested in my right hand as well. I was big on juicing, supplements, and did not worry about fats nor calories. But ALS advanced relentlessly. I hired friends as caregivers and had to bear the humiliation of being toileted by them.One of the worst hurdles for me was allowing a long time male friend wipe me following a toilet. My mother, stepfather, and sister all toileted me as well. Of course, my husband had to attend to all of my most delicate needs, showering, dressing and make-up application. I could really relate to Hillary Swank's character, Kate, in all circumstances except, she chose not to use the bipap (breathing apparatus).  I don't really get why somebody would opt out of a non-invasive solution to...

Kate

I think about my friend, Kate Struby, who died from this horrible disease in 2013. She lived here at Bailey Boushay House before I did. I reached out to Kate online through FaceBook because I loved her photograph with her head thrown back in laughter. I also loved her posts. I guess I just loved her spirit. I got to finally meet her one month before she died. I happened to be at the University of Washington Medical Center for my quarterly appointment when I saw her FaceBook post. She was awake and in the medical ICU. She was a mere few floors down. I would not be stopped. Relativeor no, I would meet my FaceBook friend. Thank God I did. I rolled into the room to find a beautiful, ethere.al woman flanked by two friends. Although it was an impromtu visit, she said she knew me immediately.I was in awe of her with her fiery spirit despite the ravages of our shared disease. She, unable to lift even a finger, lifted my spirit.