Skip to main content

Poison Pen

Care Conference seems like a big waste of time and energy. Not enough follow thru. Email and signs don't teach newcomers nor old timers. Still no emphasis on time consciousness. Whenever I'm changed they ought to hold their breath, or breathe thru a straw with a clothespin on their nose, then perhaps they'll rush to raise my head and get pillows under my arms so I can get a good breath.

Regarding the room issues, the overhead light closest to the windows has already been replaced. Never fixed. Always flashes intermittently, which interferes with Tobii operation. Nobody gives whole story. Tell Tate the history. I'm always asleep when he arrives. Same story with the DVD Player, never Finishes downloading the movies on Netflix since I got the new one.(Tate has already addressed all of these this very morning). Thank you Tate.

I'm the weak link. Everyone assumes I can fend for myself but I cannot rely on the tobii working.  Dayshift doesn't place tobii in front of me to communicate. A whole batch of  new people never got appropriate training for assisting the ALS patient when the last batch graduated nursing school and moved on. They don't even know how to move my neck when it's 90-degrees, short-circuiting my brain, and overextending my neck and shoulder muscles. Or prevent me from choking every morning because my throat is so dehydrated, it sticks together. They all just ask if I'm having breakfast (their goal), instead of helping me to achieve my goal of breathing and  being able to communicate.

Can you blame me for my cynicism?!

Do not get me started on food! I was promised that slurries would go away in August.  They did not.Every day I am frustrated by  food. Either I'm shorted  menu items or they arrive too dry to make a bolus, too watery to consume safely. Offering bananas that arrive browned are a waste. I respectfully suggest having the PCTs cut them up. They do this brilliantly. Trust them. Cut Fruit is arriving much improved, larger pieces are so much easier to manage.

Eggs are awesome, scrambled, poached, and with Hollandaise sauce! Grits and malt-O-meal cause choking, like rices and orzos. For some reason, oatmeal goes down well. I add coconut oil. I cannot tolerate thin liquids nor the cold cereal. Jello is treacherous, I avoid it.

As I reported previously, lemon cake, jello cake, and bread pudding are moist enough without alteration. The other cakes and cookies are acceptable with ice cream. However, to serve it ala mode before it leaves the kitchen is foolhardy. It melts and makes a disgusting, inedible mess. Slurries are not an option! They are an insult.

The taste has improved measurably in the chili, and the mexican foods, enchiladas and tamales. Thank you so much! Fish taco with a sour cream sauce would be a welcome addition using your pico de gallo and a fish stick. Try one at  Taco  Del Mar sometime.

Thank you for the Beet and Goat Cheese salad!!! The Chicken salad is incredible. The Shrimp Louis is a frightful disappointment when I get nothing but shrimp. At least send up cocktail sauce so I have a Shrimp Cocktail. By the way, a Louis should have thousand island dressing. I keep that in my fridge.


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.