Not Ready for Independence Today

I’ve been avoiding this blog post for 6 months. I didn’t want to write this, because by not writing it somehow I could keep believing I have more time. I’m not ready for this kind of independence. My mother is terminally ill. I’m not ready to lose my mom.

Tonight, all I can think about is that it was almost 6 months ago that my mother was told she probably had 2-3 years left as a best case scenario- unless we found a miracle – and she wasn’t offered much hope for that. Her lungs are turning to scar tissue, one cell at a time, and they don’t know why. If she catches a cold that turns to pnuemonia she “won’t make it out of the hospital.” So, the “best case” is for her to slowly have more and more trouble breathing….

I am not ready to lose her. My baby girl is only 9 months old – one of 18 kids who  are about to lose their grandma. If the doctor is right, and despite my desperate prayers, I believe she is, Eva will only know her grandma through pictures and the few short videos I sneak in when my mom is not paying attention. She won’t remember how her grandma loves her so fiercely.

My mom has been on oxygen since Eva was just a few weeks old. Suddenly power failures feel like a state of emergency while the oxygen concentrator beeps its alarm and we fumble for her backup oxygen tanks. A simple walk from the living room to the kitchen becomes an exercise in patience for her, as she has to disentangle her new 50 foot leash from toys and furniure along the way. I am having to restrain myself from screaming at lowly employees of the medical home care companies that are saving nickles and dimes at the expense of my mother’s safety and comfort.

Like the time they tried to tell her that she would need to start picking up and delivering her own oxygen tanks each month- all 30 of them – so they would not have to drive so far.  The delivery guy backed down when I explained that there was NO WAY my 4’11″ arthritic, oxygen-dependent mother could haul a bunch of metal tanks in and out of the house to save them a few pennies. Anyone strong enough to do that probably doesn’t NEED oxygen. And how it took them almost a week to deliver a new supply of tanks when they promise 24 hour service. Or the way they refuse to carry inexpensive equipment she needs, since Medicare can’t require them to provide what they don’t have.

Two dollar rebreather masks so she can exercise and 50 cent oxygen cord swivels to help prevent cord tangles are not available because Medicare pays them a flat fee whether they offer them or not. These are not things we can pick up at the drug store.

I feel like I am watching her slide off a cliff in slow motion. Day to day we go about our business, quietly panicking when someone coughs too close to her or when another news story runs about local outbreaks of swine flu. We talk about what is happening some, but her fear is real and looms so large that we avoid too much talk of details.

She is struggling to do more, even as the disease steals her breath. Every day it seems that simple things are a bit harder for her. Every day I feel more helpless. I can’t fight this unknown invader. All I can do is try to reduce her stress and be here. I wouldn’t choose to be anyplace else, but I wish I could do something more tangible.

I’m not ready to lose my mom.

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