Wednesday, May 27, 2015

Every kid romantic thinks: When I grow up I want to be one half of the dreamy "love-is-all-you-need" poster couple


I'm trying not to be angry that it seems our society stacks the disabled poor deep and stows them in tight corners to die, but sometimes I can't help it. Especially when I can't sleep.

I caught the stroke. Why wouldn't it make sense that I'd catch the pneumonia too? 

Maybe because Mr. PNU's family and the fundraiser paid $14,000 for a month of care at a long term nursing facility. And because of that fact alone one might have imagined in the first week of his stay that price might guarantee him a shower at least once, or that if he hit the call light to have a brief changed he wouldn't lay in feces and urine for over an hour waiting for someone to respond, or that someone would put a stethoscope to his lungs before I could hear the crackling when he breathed, or that physical therapy staff would check up on the fact that he turned pale, became short of breath and nauseous after they worked with him, or that physical therapy would have some sort of concrete rehabilitation plan developed that was less arbitrary than asking Mr. PNU what he feels like working on from day to day.

The last week and a half on the second floor respiratory unit has been a dream in comparison to our first week on the first floor. The staff is prompt and attentive, kind and helpful. My husband has showered regularly. He never sits in a soiled brief. But dreams come at a price. $500 a day. And the idea is that since Mr. PNU's lungs have responded to the aggressive antibiotic and respiratory therapy he'll be transferred back downstairs.

Reality keeps me up at night. I've stopped dreaming.

Medicaid informed me today that disability determination has been postponed until July when Mr. PNU can undergo a neurology exam three months post-stroke. This seems ridiculous because of the profound nature of his hemiplegia, but I've been told this date is prompt for the government. For any outstanding unpaid balance the nursing home frequently goes after patient homes. The head of nursing said so today in front of my husband. As if he were a low return commodity. As if life is only precious on entrance to the world. Luckily, instead of a house my husband invested in a PhD in philosophy. But the hard, hard truth is, we haven't the necessary resources to provide my husband with any kind of sustained quality of life, and as slow as therapy is progressing my husband is living in a death trap where nobody cares unless you've got capital to prove you're worth saving.

After therapy, I pushed my husband outside in his wheelchair once around the block, hoping for fresh air, fresh perspective, for someone to offer the pinch to wake us both up from life. So here's my new perspective: 

If it weren't for  the constant concern and visits of friends and family, for the fact that I still lay in bed with the love of my life laughing and cuddling every night, and that I get the feeling everything will be okay when we pray together before I go home at the end of every day, this would be a nightmare. We are the poster couple for the belief that love is all you need.

I can't be angry at that. Dreams keep coming true.

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