Sometimes I'm ungrateful and sick-to-death of being a cog-in-the-wheel hospice resident.
Most days I'm grateful to God, the caregivers, and the system that I have good care since becoming paralyzed by ALS. Caregivers tend to my every single activity of daily living; dressing, eating, toileting, rolling over, wiping my nose, you-name-it. If my door is open, volunteers try to entertain me; some activities I participate in, others I avoid.
As in any life, each day brings myriad variations of daily minutae. In the course of receiving medications through my P.E.G. tube, I get interrupted from activities, my private space gets invaded (my "PEG" is positioned right between my breasts). Invariably, I get medications dripped, splashed, and dumped on me. Worse, I can't speak intelligibly which leaves me wet and sticky often Since nurses don't seem to notice.
Breif changes, many times a day, are usually fraught with annoyances. During the day there is normally enough people around to have caregivers who know my routine. But, not always. The more paralyzed I get, the more steps are added, thus, the more to go awry. Also, caregivers await audible cues from me which I can only do through forcing air out by compressing my gut. Now I sound downright bitchy. Whether I mean to or not. Since verbalizing is such an energy sapper, I must admit, oft times I am.
Unfortunately, these are the facts. I used to be far more congenial. Apparently, those were the halcyon days. Try as I might to employ patience, tolerance, and kindness, in the face repeated mistakes, fatigue, and poor communication, I often fail. I am truly sorry for this. I pray you and God will forgive me.
Most days I'm grateful to God, the caregivers, and the system that I have good care since becoming paralyzed by ALS. Caregivers tend to my every single activity of daily living; dressing, eating, toileting, rolling over, wiping my nose, you-name-it. If my door is open, volunteers try to entertain me; some activities I participate in, others I avoid.
As in any life, each day brings myriad variations of daily minutae. In the course of receiving medications through my P.E.G. tube, I get interrupted from activities, my private space gets invaded (my "PEG" is positioned right between my breasts). Invariably, I get medications dripped, splashed, and dumped on me. Worse, I can't speak intelligibly which leaves me wet and sticky often Since nurses don't seem to notice.
Breif changes, many times a day, are usually fraught with annoyances. During the day there is normally enough people around to have caregivers who know my routine. But, not always. The more paralyzed I get, the more steps are added, thus, the more to go awry. Also, caregivers await audible cues from me which I can only do through forcing air out by compressing my gut. Now I sound downright bitchy. Whether I mean to or not. Since verbalizing is such an energy sapper, I must admit, oft times I am.
Unfortunately, these are the facts. I used to be far more congenial. Apparently, those were the halcyon days. Try as I might to employ patience, tolerance, and kindness, in the face repeated mistakes, fatigue, and poor communication, I often fail. I am truly sorry for this. I pray you and God will forgive me.
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