SeaGunny
Active member
- Joined
- Feb 15, 2023
- Messages
- 95
- Reason
- Lost a loved one
- Diagnosis
- 01/2021
- Country
- US
- State
- TX
- City
- San Antonio
A couple of comments:
HUMOR: Don't EVER lose your sense of humor. Particularly with you PALS. (This disease is not funny, but sometimes life is!)
POTTY BREAKS: FYI, I give my PALS the early morning Potty Break. Thankfully she can still stand so we use the dining room table and THANKFULLY is is on a hard tile floor. Seems she needs to potty before every feeding. Sometimes during feeding, all too often after feeding and sometime right after she has already gone potty. So, 3 feedings we have a minimum of 5 potty breaks a day, more like 6 but sometimes way more than that. Then at 10 PM then before bed. She HATES to go to sleep! I often find myself up past midnight even though help gets here (usually - hopefully) around 10 PM and they stay until 0800. I now have them dress her for bed and dress her in the morning for day. The ONLY time I get to myself is after she is snug in bed and before I fall asleep from fatigue.
Engineers and space planers try and keep the Kitchen Triangle small. That is the distance one has to go between the stove, the sink and the fridge. Also, consider wheeled carts, tables and even those wheeled mechanic's stools.
CLEANUP AISLE 3! My PALS is on a totally liquid diet. As is often the case (usually about once a day in the afternoon) she has a "blowout". She soiled her Depends to overflowing, her pants all the way down to her socks and shoes - and pooled on the floor. While a normal #1 is like a 15 minute process, a #2 like this is anywhere from 20 to 40 minutes.
HIRED HANDS: After staying up until 5 AM to get her settled in, teach a "new recruit" how to apply her BiPAP Mask, adjust it, how to operate it, how to adjust it and what sounds they should be aware of - good sounds and bad sounds. One helper slept through the light and audio alarms - completely! I got up, took care of it, and when they woke up, asked what had happened. Told them I did not want to ruin their sleep.
RESTING - ANGER MANAGEMENT: PALS wakes up about every two hours. Am I tired? Worn out, bone weary, dog tired! Tired is the new "Norm" and yes, like Greta, I have verbally expressed my exhaustion in no uncertain terms to my Bulgar ALS PALS and have regretted every word I expressed in frustration and anger to include the multitude of pillows and other items I have sent flying.
I had one person tell me they would come help for awhile but they had to go on vacation! The irony of that statement - is beyond my capacity to verbalize or put in print. It seems like no one outside of the ALS community has an inkling of what a CALS goes through. I got so many annoying calls one days, aside from being dog tired, I was getting frustrated and very angry. When a friend called and asked how I was doing, I told her "I am in Hell. How is your day?"
HELPFUL HINTS: Don;t lose your sense of humor. Keep you "Triangle" as short as space, fixtures and privacy will allow, Create a How To Manual - someone else may need to know what you do, when and how, Eat as healthy as you can and rest all that you can, when you can, If we are rested, we can overlook that which annoys us and remind ourselves it is the disease and not the person. God Bless you all.
HUMOR: Don't EVER lose your sense of humor. Particularly with you PALS. (This disease is not funny, but sometimes life is!)
POTTY BREAKS: FYI, I give my PALS the early morning Potty Break. Thankfully she can still stand so we use the dining room table and THANKFULLY is is on a hard tile floor. Seems she needs to potty before every feeding. Sometimes during feeding, all too often after feeding and sometime right after she has already gone potty. So, 3 feedings we have a minimum of 5 potty breaks a day, more like 6 but sometimes way more than that. Then at 10 PM then before bed. She HATES to go to sleep! I often find myself up past midnight even though help gets here (usually - hopefully) around 10 PM and they stay until 0800. I now have them dress her for bed and dress her in the morning for day. The ONLY time I get to myself is after she is snug in bed and before I fall asleep from fatigue.
Engineers and space planers try and keep the Kitchen Triangle small. That is the distance one has to go between the stove, the sink and the fridge. Also, consider wheeled carts, tables and even those wheeled mechanic's stools.
CLEANUP AISLE 3! My PALS is on a totally liquid diet. As is often the case (usually about once a day in the afternoon) she has a "blowout". She soiled her Depends to overflowing, her pants all the way down to her socks and shoes - and pooled on the floor. While a normal #1 is like a 15 minute process, a #2 like this is anywhere from 20 to 40 minutes.
HIRED HANDS: After staying up until 5 AM to get her settled in, teach a "new recruit" how to apply her BiPAP Mask, adjust it, how to operate it, how to adjust it and what sounds they should be aware of - good sounds and bad sounds. One helper slept through the light and audio alarms - completely! I got up, took care of it, and when they woke up, asked what had happened. Told them I did not want to ruin their sleep.
RESTING - ANGER MANAGEMENT: PALS wakes up about every two hours. Am I tired? Worn out, bone weary, dog tired! Tired is the new "Norm" and yes, like Greta, I have verbally expressed my exhaustion in no uncertain terms to my Bulgar ALS PALS and have regretted every word I expressed in frustration and anger to include the multitude of pillows and other items I have sent flying.
I had one person tell me they would come help for awhile but they had to go on vacation! The irony of that statement - is beyond my capacity to verbalize or put in print. It seems like no one outside of the ALS community has an inkling of what a CALS goes through. I got so many annoying calls one days, aside from being dog tired, I was getting frustrated and very angry. When a friend called and asked how I was doing, I told her "I am in Hell. How is your day?"
HELPFUL HINTS: Don;t lose your sense of humor. Keep you "Triangle" as short as space, fixtures and privacy will allow, Create a How To Manual - someone else may need to know what you do, when and how, Eat as healthy as you can and rest all that you can, when you can, If we are rested, we can overlook that which annoys us and remind ourselves it is the disease and not the person. God Bless you all.
