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Worry Stone

It's amazing all the things I worry over in the course of the day. Some worries seem so legitimate, such as when certified nursing assistants (CNA) manage to hurt me when performing routine caregiving, such as transfers into and out of bed or when they are changing my brief (also known as an adult diaper). (Yep, I wear them, laugh it up now and get over it. It's another grim fact of life when one lives in a nursing home. It's not that I'm incontinent but the aides are spread so thin that they cannot whisk me directly to the toilet... ). Anyway, doing normal things can be painful when aides are poorly trained or merely ignorant of the physical deterioration of ALS.

I worry that I'm not getting enough liquids in a day to stay hydrated. I should have 3000 ml/day. But I'm lucky if I drink 500 ml. My supplements are administered through my feeding tube with water. I am not sure how much plus, I sweat...A LOT...I'm in an overheated environment and I sit in a power wheelchair with a vinyl covering. I keep bringing my concerns to my nurse on duty but I don't see a concerted effort to keep my hydration level up and I'm thirsty and dry all the time.

I worry about what will be served for meals and whether or not I will be able to eat it. So many meals I get contain items I've had to remove from my diet due to progressing dysphasia because of ALS. I love and adore food but my love affair is for good food, healthy food, and food from diverse ethnicities. Not processed, canned, nor bland frozen or mushy foods. Unfortunately, nursing home fare is pretty much frozen, canned, and reconstituted blandness. Thankfully, I've had a bit of help in that area for the past six months.

.Other worries are more vague. I worry about how I will be remembered after my death. While I subscribe to the belief that "How others feel about me, is none of my business", I still care that I leave the majority of acquaintances, friends, and family with pleasant thoughts of me. While I know that some won't have good thoughts, I know there is not a damn thing I can do about it!

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Location: Federal Way, WA, USA

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