Skip to main content

A Beautiful Mind

The mind is a wild and wonderful thing. Today a lot more goes on upstairs than people realize. Many people make the mistake that because I live in a nursing home, I must also be feeble-minded. That because I speak like a five-year-old (due to dysphasia), I must also have the intelligence of one. It's frustrating and exhausting explaining and proving myself to those around me. Particularly frustrating is repeating myself three and four and five times to people who regularly care for me. Now I am not prejudiced. On the contrary, one of the greatest benefits to being in this home is my proximity to other cultures. But the people who struggle the most with my speech and care are people who speak English as a second language.It's a challenge to come up with alternate ways to describe things that you need.

Speaking of challenges, learning to use my Tobii alternate and augmentative speech (AAC) device is a doozy. I have always had a fairly easy time learning new programs and systems but I have found the I-series Tobii difficult to master by myself in a nursing home situation using just my eyes. Adjusting settings require mouse clicks, which requires fingers. My nursing home requires daily log-ins to access the wireless network and wouldn't you know every time I try to logon Tobii capitalizes the first letter which means I need to get help. Then my first challenge comes into play, find somebody who understands me. And facebook isn't much fun when you can't message your friends or view their photos or videos.

On a positive note, the Tobii has been one of my most useful tools besides my wheelchair. Keeping my mind active, giving me the means to keep in touch with family and friends, a tool to blog and visit favorite websites.

Comments

Popular posts from this blog

Fall

Orange, gold, rust, burnt sienna, ochre, raw umber; the riot of fall colors, in the trees and at our booted feet; a drive in the countryside; the taste of hot apple cider on my lips; the satisfaction of a truckload of firewood we gathered and cut ourselves; elk herds on the move; hearty stews, savory soup, crusty whole-grain bread, pumpkin and gingerbread spice lattes; these are the memories I tap into the most this time of year. Cabela's fliers in the mailbox; Carhart's camo-clad hunters swarm outlying areas; mushroom garthering; huckleberry picking; logger burgers; forest service roads; cheese sandwiches on the woodstove; warm quilts, cool sheets, and flannel nightgowns; cold butt, warm heart.  Immensely grateful to have the well of memories to draw upon.

Lashing Out

Fed up. Sick of hearing, "I'm sorry."  Apologies don't erase the pain you inflict on me. You pull my pubic hair. Your nitrile gloves pull the hair from my head. Not once in a while but day in and day out. You turn me in a manner that suits you rather than in a manner that doesn't stress my body. Why won't you use the pad and sheet to turn me as one unit? Instead, you allow my body to twist as you hold me one-handed. How good you are at your job. What part of "my muscles are dying" don't you understand?

On-the-job Sass

I continue getting sass from one particular caregiver. He says, "You need to communicate with us." he continues to completely miss or dismiss the concept of I would if I could . It is part and parcel to having ALS, I am losing my ability to communicate and it is his job to assist me. Part of helping me, like it or not, is to learn my routine and anticipate needs, when possible. He misses the fact that I'm failing more every day and night time is when I'm weakest. It is extremely insensitive and arrogant to expect me to cater to his needs and expectations. Pushing me to repeat words or expound on a simple one word suggestion is physically taxing on my system, adding stress which further depletes me. Cuing is supposed to be caregiver's domain, not the patient's. Here is the situation, I am being changed. In the midst of the action, as seems to be his practice, he is sidelined asking me trivial, meaningless, but energy-sapping questions. Do I want my legs raise...