I think most of our lives look much easier to the outsider than it actually is. I've never detailed how difficult it is for my husband and I to make it from day to day. People are often commenting on how good we look. We never explain the time frames we work with day after day. We never explain how we would like to have just a day or two to relax. I look after him. He looks after me. I know how to work his vent. He knows how to work mine but he does not know how to work his! Oh well. Our son has a radio program he has wanted me to hear. For weeks i kept telling him I didn't have time. Finally I explained that it takes 3 to 4 hrs for me to get us through our morning routines and during that time I don't have a break at all. I can't listen to radio or TV or... I explained abt the medications, cleanings, food preps etc. My husband never is able to do much of mornings. That is my!
best time. I'd hate to see a movie of how we make it. But, we do make it. Not as good as 5yrs ago and some days I wonder just how much longer and them I get a night or 2 of good rest and think we are doing fine :))
----- Original Message -----From: Jim LubinSent: 10/26/2004 9:10:32 PMSubject: Re: [VENT-L] Brooke Ellison movieWhen 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 toothpas! te 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----
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
