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Abrupt Awakenings

It pains me to send caregivers packing. Before ALS, I was much more polite--not that they would believe it. Some days I awaken intolerent, protective, without energy stores. Today was such a day.

I was awakened from a dead sleep, in the midst of a vivid dream, by a man in my face, asking if I was having breakfast. I wasn't ready to answer the question since I was still groggily trying to extricate myself from dream state to reality. I'd been carrying an armload of clothes from a motel room, my husband and I were staying in, to a disembodied voice, "Tina, are you eating breakfast?".

I responded, "Let me wake up." To which he responded, "Your hair? Your head? Do you want your head up? Are you having breakfast? Do you wanna eat?" all in rapid succession. My ire raises as I'm peppered with questions by this little man leaning into my face, hands on knees, like he's talking to a kindergartner.

Why, oh why don't they follow the care instructions and wake me at 7:45 am, moisten my mouth (so I can talk to the best of my ability), wash my face, and position my tobii? Is it too much to ask?!

Then they send in another needy caregiver, who does not know my routine nor understand my words. When I send her out, she argues,  "...But you like me...". Like has nothing to do with it! I want to be kind but no energy and the only word she understands is "Out!".

Then they send in a nurse; she doesn't understand my words nor routine, either. At least she offers water. I'm so relieved until...She turns around with a syringe! I need water on a toothette or a swab, neither I can anunciate. I crane my neck toward my Tobii, non-verbally communicating my need of it. I manage to visually peck out  "toothette". She obliges, but again, she's unfamiliar with my routine. She swabs my mouth while holding it so I must tilt my head up. This allowed water to slide right down my windpipe. Bad news for me, starting my day, fighting for my life, trying not to drown. When she stands there, without putting my bed up at 90-degrees. I dismiss her as well.

I hate mornings with the ALS "D Team"! .

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Location: 2720 E Madison St, Seattle, WA 98112, USA

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