Re: [VENT-L] Brooke Ellison movie

[Jim Lubin]

When my insurance stopped paying for nursing we had less than 1 month notice. It took 6 months before I got on medicare/medicaid to get some home nursing care. My mom had to quit her job and did ALL my care during those months. I would stay at my computer while my mom got some sleep. I would play an alarm sound on my computer to wake her up. We had hospice nurses for a few hours per week so my mom got some breaks. Even now I have night nurses but my mom does most of my care. I have never had any tube disconnects in the 15 years I've been on a vent, but I have had a vent malfunction 3 times (different machines) and stop working. It's not the safest thing to do but we didn't have much alternative at the time.

Her morning routine was sure shortened for the movie. I agree though, too bad more wasn't shown. I'm wondering, how many of you use that 2 cup method when brushing your teeth? We use the suction machine to suck the toothpaste out. It's sure easier then spitting into a straw.


At 06:49 PM 10/26/2004, [EMAIL PROTECTED] wrote:

As a caregiver I do not sleep while caring for a vent dependent person
despite the alarms. Obviously Brooke's mother slept.
  The movie showed Brooke becoming disconnected only once. I thought
that was a bit unrealistic. Even though her morning routine was shown I
think it should have focused more upon just how grueling things are on a
daily basis.
  Maybe I'm being picky! I think life looked too easy in the movie.

Mary

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Jim Lubin              
[EMAIL PROTECTED]
Bothell, WA, USA     
http://makoa.org/jim
disAbility Resources: http://www.makoa.org
Transverse Myelitis Association: http://www.myelitis.org/HowToHelp