Monday, April 8, 2013

To the Stranger Taking Away My Grammy's Care...

I am posting the letter I composed to The Director of Rehab Services at the hospital where my grandmother is currently receiving treatment. I'm not posting it because I'm an expert on Medicare. I'm not. I'm not posting it because I want to put pressure on the hospital, either (the only name that appears in full is mine). I'm posting it because I know that my grandmother--my grammy--and I aren't the only patient and caregiver going through a fight to receive needed care in this sea of the unknown in post-stroke care. Many people on Facebook have followed me on this journey and cheered me on, so I'm posting this so they can continue to be with me, with my grammy, because their cheers matter. I believe that the good will, thoughts, vibes, and prayers of caring people help, and my grammy and I need those, as do all struggling to get and continue therapy, not only to keep their quality of life but prevent the deterioration of it.

After my letter are links to helpful websites and a NY Times article. Again, I'm NOT a Medicare expert; I'm just someone in the midst of having to do my homework, who'd like to give as many people as possible a few notes for theirs.


Dear Mr. H***,

I want to tell you about my hero, because you don’t know her.

Before October 18, 2012, this hero of mine was not some frail thing, content to sit all day with needlepoint and watch the world go by. My hero was a 4 a.m. riser who walked two miles a day, who drove herself wherever she wanted to go, who made her own house repairs. She raked leaves in the Fall, planted in the Spring, reveled in the Summer heat, and carried in wood for fires in the Winter cold. This hero of mine has been known to be called Grambo, a name she’s always hated, but a name that fit the woman who once climbed a fence to get inside a locked house. She pushed grandchildren and great-grandchildren up the driveway on their bikes when their little legs were too small to peddle for themselves and drove them to and from school and activities. She read, quilted, and crocheted. And the dolls she made! Porcelain or ceramic, hand-painted beauties.

Can you imagine seeing that strong person in such pain she can’t take a breath? Can you imagine watching her beg for something to stop her pain? Now can you imagine the impotence we, as her caregivers, feel having nothing to give her that will stop it and no access to the professionals who can? I don’t have to imagine any of that.

My hero had a life she’d like to get back to. Only, she’s accepted that probably won’t happen because the only time her hand relaxes and opens—maybe an inch—is during the two days a week that she has forty-five minutes in OT.

My hero’s accepted that she won’t drive again, or be able to bend to garden without risk, or carry heavy loads or great-grandchildren. So she’s contented herself with the goal of merely flossing her teeth, with real dental floss, with her own two hands. Such a simple thing, really.

Except she can’t do it.

Grambo still fits her though. Since October, she’s endured crippling pain, right side paralysis, the inability to speak or make sound, and medical procedures that would make a grown man cry out. This independent, fierce woman has accepted being driven around, being bathed, having her finances attended to for her, and having strangers decide what’s best for her recovery or for their bottom-line. And she’s done it ALL with an almost constant smile and with laughter.

This hero of mine diligently stretches her right arm and hand throughout each day and in her bed at night, and between visits to her godsend of an occupational therapist, my mom and I do our best to mimic what we see done. We’re not the professional that her three doctors say is crucial, over everything else, for her right hand movement not only to progress, but not to deteriorate in its stiffness and pain. Yet despite the fact her primary doctor, her pain management doctor, and her neurologist have made clear that she has to have professional OT, despite the fact that her Medicare benefits haven’t run out and she’d more than likely be a candidate for an extension anyway, despite the fact that she hasn’t plateaued (and disregarding the fact that it is illegal to deny a Medicare recipient therapy services because of a plateau, as clarified in Civil Action No. 5:11-CV-17-CR, JIMMO vs. SEBELIUS, Secretary of Health and HumanServices, 2012) her therapist is being told to release her. We’re asked to ignore the defeat that washed over her face when told that the reward for her hard work—through pain—is to be cut loose. We’re told to act in place of someone specifically trained and educated—we who are as clueless and scared in this new world of stroke recovery as my hero is.
I want you to know just a little about my hero because what you see as “functional” for a woman her age was not her average on a bad day prior to October. Because she’s not average. What you think is better than nothing means her going back to constant agony that pain blocks do not control, Baclofen doesn’t help, and no one but Audrey has made progress with. Amazing progress. Audrey has helped my hero go from no movement to where she’s at now, touching her shoulder and bathing, yet still unable to open her hand on command.

My hero needs OT. My hero needs Audrey. She needs to be seen as someone in severe pain, whose condition can deteriorate without OT service. She needs to be seen as an individual. She needs all that from you.

With hope,

Kalinda C. Schreiber
(K H’s granddaughter)