Skip to main content

Better To NOT Play Favorites...

BUT.. Brittany is one of my favorite caregivers. She's intuitive about my care. Always mindful about my ability to breathe, my hand and head placement, and my cleanliness. All things near and dear to my heart. She is also very adept at helping me with my Tobii augmentative and alternative speech device. One of the rare few not intimidated by this advanced technology. Additionally, she gets my ALS accent, cutting down on the need to repeat myself, and conserving my energy. Another favorite is Victoria. I know that my night will go well. I don't have to worry about how I'll be handled, feeding will be uneventful, and she is very pleasant to be with. She is another caregiver with an ear attuned to my ALS accent.

My favorite physical therapist is Darcie, for two reasons, her physical therapy skills and her bedside manner. She's a hoot! My time with her goes much too fast but is never hurried. She never talks down to me and carries the conversation unselfconcsiously, like a best friend. I get to hear about her life which is a welcome diversion from my own circumstance. And she is not afraid to really stretch my limbs and work me during range of motion. I truly get longer lasting benefits after working with her. More flexibility, longer term pain relief, and more elevated attitude. For real!

Favorite occupational therapist is tougher. I work with Marnie most often and I'm very impressed with her ability to suss out problems with my Tobii speech device. I feel very blessed to have someone with her ability and drive to understand and willingness to deal with technical support. She also shares parts of her life like a friend. This is such a treasure to be let "in" to someone's life, especially when our own "so called family" pull away. Angela is also a fave because she is my bath buddy. Once per week, she makes a tub bath possible for me and enhances the experience with humor and luxury.

A favorite nurse would be Anthony, who listens to me and retains lessons learned with regard to my disease. He's calm, calming, and efficient. Another, I think of as a duo, Natalie and Casey, who make me laugh and laugh and laugh while quickly attending to my needs. Furthermore, Casey cares enough to stick her head in my door just to say hello when she works another floor. That's not lost on me.

A charge nurse who's no longer here, Kelly, was my favorite. She was so intuitive in all aspects of my care. When nobody else got what was distressing me, she would. She was an absolute pro with my bipap and nobody comes close to her skill level. Even now. And, she absolutely shared her life with me. I got to see pics of her puppies. So great! I have other favorite charge nurses, Chris, Katrina, and Patty. Because of their abilities and personalities.

There is a danger in admitting you have favorites. The people not listed may feel underappreciated. I can say that they are not. I have an absolute appreciation for all of my caregivers. It's not easy caring for people who have ALS. Every day can be different. And mistakes can be fatal.

Also, these are overall favorites. I have people who are my favorites to wash my hair...Lindsay. Favorites to fix my hair and to dance with...Jenna. You get it. I'm holding out hope that Javi will do my make up. Just saying...

Comments

Popular posts from this blog

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.

Disrespected, Again...

It's 10 pm, I've accomplished nothing to speak of. I watched one movi, "The One I Love", a Twilight Zone-esque story on a couple trying to reconcile. And, one television show, "Running Wild with Bear Grylles" guest starring Channing Tatum. OMG!!! And, I ate some dinner. Tonight was chicken gumbo, chili, cornbread, oatmeal cookies and ice cream. Not much of a day. Nope. I was looking forward to my husband's visit but when he called at 5 pm, he mentioned that he was in Ritzville (by Spokane) working on his trailer with Darryl (the other jerk that took my cruise without me).  I do not begrudge my husband having a life away from me. However, as I keep telling him, I don't appreciate being purposefully left out of loop and disrespected by being left waiting for his disrespectful ass. Any questions?

Gratitude For Reading

People are reading my blog! I cannot express my gratitude enough. My heart is soaring! Before I got ALS, it was a minor interest amongst many varied interests. Today, I am unable to physically participate in many of my prior interests, like motorcycling, photography, knitting and other handicrafts, hiking, traveling, painting, drawing, going to the gym, working in the garden, doing housework, canning, and cooking gourmet or ethnic foods. Therefore, I am more focused on the ones that are most accessible to me, such as reading via audiobook or e-book, television, movies, meditation, music appreciation, and writing. Like the blind man who's sense of hearing and smell is heightened, I'd like to think my crippled body has made me more attuned to things more on the spiritual and sensual level. Initially, when some members of my family read my blog, they chose to focus on what they viewed as negative. The feedback I got was harsh and personally critical. .I was told that I was ...