A tip on how to make it over 24 hours without help. You can attach a second drainage bag to the main bed bag doubling the amount of urine it can hold. Simply attach the second bags intake line to the drain line from the first bag and unlock the first bag. It should drain easily into the second bag as it fills. Yes, a third bag can be attached the same way. Before emptying the bags, ask the aid to empty the intake lines. It helps limit the mess they seem to think we can't smell. Two water jugs and some fruit on the bedside table help make it through. I also have some pills that make it possible to just about sleep through most holidays.
I try to do all my Christmas gift giving by Christmas eve so Christmas day isn't a big deal if nobody shows up. The agency is aware there's nobody scheduled for Christmas Day. All my aids have let me know they can't come. I won't be surprised if nobody shows up but it isn't as though it is some sudden thing. My agency stopped holiday pay. Why should they want to work. I don't know why syringo%^&^% begins to be painful after so many years of not bugging us. I don't know what to expect next. My doctor isn't sure either because he has no information on quads that have lived over 30 years as quads. He wants to do tests, but I'm not ready to be a guinea pig at this moment and wouldn't you know it, they can't do the tests during the holidays. john In a message dated 12/03/06 16:47:20 Eastern Standard Time, DAANOO writes: Hi Linda, How could you be alone for so long? I would be on the phone every hour calling them and trying to make a complaint to someone that was in charge of their agency. That is so cruel and life-threatening, anything could happen. Could you call anyone to check my view so you could eat? I am so sorry Linda that you had to go through that. That agency should be fined and I would probably see if I could find another one, is there any more in your area? I remember you writing a while back that a couple of your aides had problems, want an car accident and the other one was in some kind of psychiatric rehab. How are they, did they come back? Dana Hi Lori, Believe me, I thought that I was going to have a panic attack. I took little sips of my water, just enough to wet my dry mouth & I didn't want to drink too much, fear of filling my UDBag. Thankgoodness I have a 4000cc bag. Yes I was afraid my bag was going to burst or I would have autonomic dysreflexia, luckily I didn't. I am on M-W-F bowel program, so that wasn't a worry. Then 5pm Sunday a CNA showed up & brother was I pissed off!!! On Monday the Nursing Agency was apologizing. Lindaf Dear Linda, If I were left for that long alone I would be dead. In fact, I would not make the first 24 hours because my urinary bags would be overfull leading to autonomic dysreflexia leading to death in a short period of time. Who helped you with urinating and/or bowel routines in that timeframe? Who helped you get drinks and food? Lori PS-- please forward this to the list if you would like so that they will know your answers if they have the same questions. -------Original Message------- From: LINDA FERRELL Date: 12/2/2006 1:03:54 PM To: quad-list@eskimo.com Subject: Re: [QUAD-L] Agency Help Over the Holidays David I agree with you, all states should hold these Agencies more responsible. I know my last agency left me from Friday nite until Sunday with no help. I had dropped my mouthstick & my lifeline button was not close enough to reach. I just layed in bed & did a lot of meditating & singing. Lindaf
