April 19, 2010
Over the last week I’ve been trying to get my preoccupation with Lauren’s future under control. I can’t seem to stop myself from bringing some aspect of my fears into almost every conversation with my husband, my friends, the checker at the grocery store, and most fervently, with God. I’m obsessed. I’ve had many stern discussions with myself regarding worrying about a future that I have no real control over and allowing my present to be so negatively affected by my concerns. I want to loosen my hold on the anvil of dread that prevents me from enjoying today, from seeing the blessings in my life, from completing a positive thought without a negative reminder to not be too happy less my fall back to reality be too hard. ....And, then I pulled my Sunday paper out of its bright yellow plastic bag. The headline told the story of a young woman named Tara, who had no family members to provide her care, who was put in the care of strangers, who died from lack of care. My greatest fears realized.
Now I have a name, a face, an all too real example of what could very well happen to Lauren. At twenty-eight years of age, Tara weighed just forty-eight pounds. Lauren has issues with eating. She doesn’t chew. She does not feed herself. She needs specially prepared meals. I cook the things that she likes, things whose taste and texture are still appealing when pureed or mashed. I make sure her diet is balanced, healthy, and that she eats enough. Who will make this a priority when I cannot? Lauren does not always want to eat. The seizures either upset her stomach or affect her appetite, I’m not sure which, but it is frequently a struggle to get her to eat for days after a seizure. Who will sit with her, cajole her, make an effort to get her to eat? And, eating is pretty much the one thing that Lauren can control in her life. I think that sometimes, she uses refusing to eat as a means to communicate. Who will understand and seek out what Lauren is trying to say?
Tara was brought by a caseworker to visit a relative, dirty, thin, and wearing her shoes on the wrong feet. I insist that Lauren always be clean, well-dressed, hair styled attractively. Her clothes are simple and pretty. She wears perfume. She has many decorative clips and pins to control her dark curls. Who will make sure that Lauren is clean and presentable if I cannot? Tara’s room was reported to “reek of urine”. Lauren sleeps in a canopied bed with a flowered coverlet, her turtle collection watches over her, a pristine white carpet covers her floor. Who will make sure Lauren lives in comfort and safety?
Do we hear stories like this often? Thankfully, no. But isn’t one, just one too many? Do I think there are other Tara’s out there who are not being properly cared for and protected? Absolutely. State case managers have huge caseloads. They cannot possibly know what is going on the lives of all the individuals they are supposed to oversee and protect. In self-direction, support coordinators must now visit each individual on their caseload once a quarter. The directive is that they must visit the individual while they are participating in an activity that utilizes monies from their budget. It would seem that the concern is more that money could be misspent, rather than the health and well-being of the individual.
And so, as you can see, my preoccupation with Lauren’s future continues. Only now it is colored by the future that a young woman named Tara did not get to live, and the pain and sadness in her too short life.