My friend, Peter is meeting with the management of our "home" to discuss ideas on how to make it a better place for ALS patients. What a great idea and a much more positive position to come from than I come from. I'm not exactly certain of the format tomorrow but since I cannot communicate quickly on-the-fly, I better write up a few ideas from my viewpoint.
Since ALS robs us of our muscles, but differs in which ones, it's important to be fully educated on the effects of muscle loss by different regions of the body. While nurses learn anatomy and physiology, I don't believe PCT's, CNAs, and such get that education. And, let's face it, book learning is vastly different than hands-on experience. I find the PCT's, by and large, far more adept at attending to the activities of daily living, particularly, if they have experience with people with neurological deficiencies or brain injuries.
They should get intensive instruction on ALS. It's remarkable to me how few caregivers get it. The same mistakes and missteps are repeated over and over. Virtually every time I'm changed, I am questioned whether or not I want my head raised up. It's a no brainer, YES! Gravity is not your friend with advancing ALS, particularly by the time we make it to hospice care. Chest muscles are weak; blankets can crush you, making breathing difficult or impossible. Truly. Suffocation is most often how we die. Read this again, suffocation is most often how we die.
Additionally, my arms must be supported at all times, lest the weight of my upper body crush my diaphragm and stop my breathing. And yet, some of my caregivers still try to remove my pillows from under my arms BEFORE Reclining the head of my bed. And none, think to support my arms when I sit the commode, transfer to the shower chair, and few translate this knowledge into wheelchair transfers.
Speaking of wheelchairs, it is extremely important that caregivers learn how to operate our chairs, particularly the head-operated models when our speech is impacted. Signs do not work. Care plans do not work. Assigning this task exclusively to the occupational therapist does not work. Just last night, I was folded up in my wheelchair to the point of not breathing and nobody knew how to correct. They figured it out but nobody knows what happened thus, it'll likely happen, again.
Another place of improvement is respiratory. Most times I've needed my cough assist or suction machines, I've been gravely disappointed to discover ineptitude. (sorry, this is too vital to mince words) Two nurses should work in coordination. If the cough assist brings up secretions, the suction wand needs to follow STAT. My dysphasia makes it difficult to hold this in my mouth, without re-swallowing and re-blocking my airway.
Speaking of dysphasia, additional education needs to occur, even in the kitchen. My previous speech pathologist provided a detailed outline of instructions for feeding. Small bites, extra sauces for moistening, limit distractions, no mixed textures, custard-thick liquids administered by spoon. Lettuce, corn, beans, peppers, and jello are not appropriate for me but they show up on my plate. Merely cutting up the food is resulting in dry, inedible food. People with advanced dysphasia need moist food to be able to make a bolus to avoid choking. None of my caregivers seem to understand that I opt out of drinking by mouth because of their lack of understanding in this regard.
It sounds like a lot and it is. This is a disease process that requires a lot of understanding and support, and in my experience, Bailey Boushay House, despite my criticism, does it best.
Since ALS robs us of our muscles, but differs in which ones, it's important to be fully educated on the effects of muscle loss by different regions of the body. While nurses learn anatomy and physiology, I don't believe PCT's, CNAs, and such get that education. And, let's face it, book learning is vastly different than hands-on experience. I find the PCT's, by and large, far more adept at attending to the activities of daily living, particularly, if they have experience with people with neurological deficiencies or brain injuries.
They should get intensive instruction on ALS. It's remarkable to me how few caregivers get it. The same mistakes and missteps are repeated over and over. Virtually every time I'm changed, I am questioned whether or not I want my head raised up. It's a no brainer, YES! Gravity is not your friend with advancing ALS, particularly by the time we make it to hospice care. Chest muscles are weak; blankets can crush you, making breathing difficult or impossible. Truly. Suffocation is most often how we die. Read this again, suffocation is most often how we die.
Additionally, my arms must be supported at all times, lest the weight of my upper body crush my diaphragm and stop my breathing. And yet, some of my caregivers still try to remove my pillows from under my arms BEFORE Reclining the head of my bed. And none, think to support my arms when I sit the commode, transfer to the shower chair, and few translate this knowledge into wheelchair transfers.
Speaking of wheelchairs, it is extremely important that caregivers learn how to operate our chairs, particularly the head-operated models when our speech is impacted. Signs do not work. Care plans do not work. Assigning this task exclusively to the occupational therapist does not work. Just last night, I was folded up in my wheelchair to the point of not breathing and nobody knew how to correct. They figured it out but nobody knows what happened thus, it'll likely happen, again.
Another place of improvement is respiratory. Most times I've needed my cough assist or suction machines, I've been gravely disappointed to discover ineptitude. (sorry, this is too vital to mince words) Two nurses should work in coordination. If the cough assist brings up secretions, the suction wand needs to follow STAT. My dysphasia makes it difficult to hold this in my mouth, without re-swallowing and re-blocking my airway.
Speaking of dysphasia, additional education needs to occur, even in the kitchen. My previous speech pathologist provided a detailed outline of instructions for feeding. Small bites, extra sauces for moistening, limit distractions, no mixed textures, custard-thick liquids administered by spoon. Lettuce, corn, beans, peppers, and jello are not appropriate for me but they show up on my plate. Merely cutting up the food is resulting in dry, inedible food. People with advanced dysphasia need moist food to be able to make a bolus to avoid choking. None of my caregivers seem to understand that I opt out of drinking by mouth because of their lack of understanding in this regard.
It sounds like a lot and it is. This is a disease process that requires a lot of understanding and support, and in my experience, Bailey Boushay House, despite my criticism, does it best.
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