Bipap in the hospital

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I am so sorry Kathy. I am sorry for Tom, your daughter and you. You must be exhausted. I think being at home will be better. You can't keep sleeping at the hospital and expect to function. Also you can direct the aides at home better than you can the aides at the hospital.

This is probably the final stretch so increase the home health aides as much as you can. I waited too long to increase the help. At the end of the day, he still may need to go to a nursing home. A lot will depend on how well the agency can staff up the help.

My prayers and thoughts are with you this week end.
Mary. Thank you. I did increase aides and also switched to a larger agency that may have more people
I give them credit for not pressuring you to put Tom into a nursing home. They must view you as quite capable.
Otherwise they would be trying to talk you out of it.
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Will you go on hospice now? He is weaker than he was and hospice might be appropriate.
I feel like we still need pulmonologist. But hospice would be fairly soon.
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I am going to share. Early on after my diagnosis my doc said I needed a feeding tube. Prior to the date of surgery during one of the phone calls I was told to bring my AVAP along. I have returned to the ER 3 times since and have taken it with me each time. Blessings to all of you. Don
Prayers sent for you and Tom.🙏🏻
As a retired nurse. In the hospital I worked at we were required to make patient rounds every hour to evaluate our patient’s needs. I am sorry they are not assisting more.
Frazzled - why didn't I think of that word? Understand the situation and it seems I may not be far off from it - from where you are at. Even so, I am fried now. I was up to 4 AM this morning trying to get a proper BiPAP face fit, then awoken a 0800 AM and finally at PALS calls was up by 9 AM. I will be up til midnight. Care company must have heard. Yesterday I had 2 granola bars for supper, They dropped off at 11 AM a small pizza and some protein drinks which at 7:37 PM are still sitting on the counter. Am I hungry? You bet but no appetite.

My bookcase which held my prized books is now a medical supply storage unit - as are several dressers, closets and other tables.

In Texas here, a lot of trees do not lose their leaves until spring. A couple of gents trying to help used my rider mower which was fitted with a grass catcher. They did not know what that was (????) so removed it! I now have brown grass peaking out among dead leaves about the size of confetti.

Tax specialist was here and all I had was a folder for all my stuff. She was satisfied - but I wans't! Then the eye gaze trainer was here and so I (the CALS) had to learn how to on several issues for the PALS.

I still have a caster equiped bedside table to put together. hoping to fix this one up so that PALS suction machine and cough machine can share the same table and be moved rapidly when needed.
Seagunny. I remember an older post where yiu said you had lost a bit of weight. Try to eat even with no appetite.
Frazzled. Yes. I set off the house alarm this morning. I put a big sign "alarm " on the door and looked at the sign and opened the door to let Jasper out.
Greeneyes, ALS patients need someone within sight or sound. If one leaves them alone for an hour, they will feel abandoned and neglected. They also like to double task (the care giver) I had my PALS in her power chair (a Permobile), feeding her while she worked her eye gaze and had to take a break using her IPad to tell me what she needed, then gave me the "go potty" sign! To do that, I disconnected her gravity bag, set up her IPad, got her to the point where I slipped her shoes on so she would have traction to stand, stood her up moving potty chair into position, backing power chair out of the way while we were at the "transfer" point. If she needs changing, this requires that I remove her shoes after placing her in a chair where she has traction, changing the clothes, putting the shoes back on and per her intent, put her back in the power chair or move the cushion to her transport chair, washing my hands, then reconnecting the gravity bag all the while maintaining a log book of these start and stop to her feedings.

I have two 4 year degree, career RNs in the family (though not in my location). One stated they had never seen a patient require so much attention in their careers.
I was working (armed) security. We has a resident who set off her alarm. After she walked through a alarmed door, her phone line went ded which upset her. Alarm company tried calling her and she got no where trying to call who she was talking about. When we arrived, scared her almost to fear, two guys, armed pulling up in her yard in big Ford Corwn Victorias with light bars! We had to explain that when she set off the alarm, the alarm seized the phone line for its own use

I try and eat something that is mild - like my cereal and milk. I also try and "snack" on some kind of glop - usually fruit flavored - but light.
I was brought a small pizza today that got here before 11 AM. I did not get a chance to eat it until around 7 PM and then it was "Potty time". I ended up having to reheating it 3 times before I could finish 2 slice or half of the pizza. I finished those two slice at 9"45 PM. .
PALS needing to see someone and multitasking.

When we had the overnight aide (she was very good) it would take some time to get PALS settled in the bed at night. I was getting ready to leave him and go upstairs to our bedroom, that he had not slept in for 7 months. He could not get comfortable. This pillow? This arm? Your head? The bipap?
I finally realized it was anxiety. The good aide left the agency. Revolving door of replacements. I finally lost it with one who did not move out of the recliner to help me, leave now I said. It was 4am.
Now I use a monitor. No issues getting settled. No aide here. I can see you and hear you on the monitor. Get some rest.

Multitasking. No matter what task I am focused on at the moment, PALS has moved on to the next one. It can be very confusing because communication is really difficult. I am focused on the pillow, and he on his feet.
How frustrating Tom's wife, but in a strange quirky way it must be rather comical. Tom must think your doing fine doing the task your doing, such so he can move on to the next task!
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