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Greetings from Illinois!

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Hi all,


I've just signed up for AARP & new to this community; still learning how to navigate the site.


I'm from the Chicagoland area & have been disabled with a rare progressive spinal cord disease known as Syringomyelia since 2009. My Mother & I were living together where we took care of each other, but she was diagnosed with Alzheimer's Disease last December, is now in an Assisted Living facility & I am living alone. I've had lots of major life changes recently that have been quite overwhelming & very stressful. I am trying to obtain a Personal Care Assistant for myself so that I can continue living independently in my home. Unfortunately Illinois is not a disability-friendly state, and the lack of an IL budget is hampering the obtaining of Home & Community Based Service Waivers for in-home services for those with disabilities & the elderly (in the bottom 5 of all states). Consequently, far too many people in Illinois are being forced into nursing homes that could be living in their own homes & in the community at much less expense to the state. I certainly don't want to be warehoused in a nursing home & am hoping to relocate to another state as soon as possible. 


Needless to say, healthcare & Social Security/SSDI are major concerns for me & have resulted in numerous sleepless nights lately. I'm glad that AARP is fighting so aggressively on these issues! 


I hope everyone is enjoying their weekend & Happy Father's Day to all you Dad's out there!




Jules 🌷

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Prepare to Care: A Resource Guide for Families download this free guide developed by AARP to help make caregiving more manageable. It includes information on how to have vital conversations with older family members, organize important documents, assess your loved one's needs and locate important resources.