In 1968, my precious sister Susie was born. Susie, as many of you know, was born with Down's Syndrome, a genetic condition that caused her to experience cognitive delays and an impaired ability to live independently. My parents, against the ill-informed recommendation of her doctors, decided to take her home from the hospital when she was born and raise her as they did their first two daughters, my sister Andi and myself. She was born during a time when parents of children with Down's Syndrome were encouraged to write them off immediately and surrender them to the care of cold, impersonal institutions that were overfilled and underequipped to raise these children properly, supplying them with bare necessities until they died at an age much younger than their life expectancy. Susie lived happily under the love and support of her parents & family, surrounded and enriched by her school, her church family, and her community from the time she was born until the death of my parents, who passed away seven weeks apart in 2016. Reeling with grief from losing our parents so close together, Susie came to live under my care. I wouldn't trade the eight years I had with her for the world, however, the 8 years came with their challenges. 5 years ago, as Susie and I were washing up dishes, I asked her to fetch me a wash rag from the laundry to help dry dishes. She left and came back empty-handed. I asked her "Where's the wash rag, Susie?" and she left again to go get it, returning with an unopened bottle of dish soap from the supply closet. I didn't know it then, but she was displaying the first signs of her journey with Alzheimer's, one that would progress to take her life on Thursday, May 23rd of this year.

In March of 2023, after years of struggling to arrange care for Susie as I worked full-time, I finally left my job once Susie's Alzheimer's began presenting with comorbid epilepsy. Once her seizures started, I knew she had to become a higher priority for me than work. Unfortunately, my financial situation deteriorated sharply. I was unable to tend to Susie's round-the-clock needs and hold down a full-time job at the same time.

The past years ultimately required me to tend to her care 24/7. I applied for every relevant form of support I could find, including Personal Choices, the Medicaid waiver that provides support to families in my situation, and several other programs. In these past years, I have learned that the support our society provides to those with Alzheimer's and those taking care of these individuals is poorly under-resourced to the point of being nearly inaccessible. I was unable to utilize any support services in a timely manner. Personal Choices delayed Susie's approval for over a year, giving me multiple different excuses as to why my case was being ignored, including my caseworker's pregnancy and complaints of understaffing, finally arranging for support payments to start this month, one month after her passing. I never saw and will never see a cent from that or any of these programs.

So many of you have reached into your hearts and your pockets over the past years to help support us and pick up the slack from these support programs that are supposed to be in place to help families like mine. I have been neglected by their bureaucracy and blessed by your generosity, and as much as it pains me to say it, I require a little more support to get through.

Now that Susie has passed, I am actively looking for work, filling out job applications as hard as I can but until I'm able to resume earning a steady income, I am completely without assistance right now. I am still reeling from Susie's loss, and the last thing I want to do is come and ask for more money while going through such a difficult time, but I have no choice.

Any assistance you can provide would be beyond appreciated and a blessing more valuable than I have words for. Any advice you may have for support programs or places I could turn to for support would be just as appreciated. Thank you so much for taking the time to read my story and I hope you are all able to be as blessed as I have been during this journey. With love, Bev.