By Mariya Gorkhover, RN, BSN, CCM
When Mrs. Shapiro* was first diagnosed with Alzheimer’s disease, her daughter Mindi did not yet understand the implications of the condition.
“Mom was getting forgetful and for the longest time we all thought it was age,” she recalled. “When the doctor put her on Aricept, she got better, and honestly I was in denial and didn’t fully believe the diagnosis.”
About eight months later, Mindi received a call from the Mt. Sinai Hospital emergency department. A neighbor had gone to visit Mrs. Shapiro, who mentioned to her that she was feeling nauseous and had stomach cramps. When Mrs. Shapiro vomited, she knew it was time to call 911. She found a half-empty bottle of naproxen, which Mrs. Shapiro took to help with her joint pain. She recalled her buying the bottle when they went to the supermarket two days ago.
Mrs. Shapiro could not remember how often she had taken the naproxen, and said, “I always just take it when I have pain.” She was admitted for NSAID overdose.
The hospital psychiatrist identified a moderate cognitive impairment, significant short-term memory loss, and recommended that Mrs. Shapiro receive constant supervision. The social worker at the hospital suggested that Mindi look into home care. That was the extent of the advice and guidance Mindi received.
“I remember feeling completely at a loss. I was a divorced mother of two, working full-time, and now this? My mother needs to have a babysitter 24/7? How can I do this?”
From the hospital, Mindi took her mother to live with her in her two-bedroom apartment in Queens until she could figure out her options. She hired private-duty aides from a licensed home-care agency but was not able to afford the hours of care she felt her mom needed. After Internet research, outreach to elder advocacy groups, and a NYLAG lawyer, she was able to figure out what path millions of other dependent elderly people had already undertaken: obtaining community Medicaid for her mother and enrolling her into managed long-term care.
When someone first suggested community Medicaid to her, “I wanted to laugh in their face,” Mindi said. “Medicaid wasn’t for people like us. We would have to give up all the money Mom and Dad had saved up, the home that they bought, all of Mom’s pension, and who knows what else. I really thought we would be left with nothing.”
Through a friend of a friend, Mindi found Sam Rausman, a licensed social worker from Brooklyn who worked with elder-law attorneys to help elders like Mrs. Shapiro. Mr. Rausman first referred Mindi to an elder-law attorney, who established an irrevocable trust in Mindi’s name, protecting Mrs. Shapiro’s assets while allowing Mrs. Shapiro to apply for community Medicaid. Mr. Rausman and his staff then guided Mindi through the Medicaid application process, in particular filing for the spend-down program and establishing a separate pooled income trust, so at least some of the money paid to the state could be used for Mrs. Shapiro’s bills and other permitted expenses.
“I had no idea any of these options even existed,” Mindi recalls. “Mr. Rausman and his staff really took their time to explain to me both what I had to do and where it all fit in. Finally, someone was telling me the full story rather than bits and pieces.”
The day Mindi finally received the 30-day notice of Medicaid enrollment for her mother was a breakthrough. However, that turned out to be only the first step of the next part of the journey.
As per current guidelines, most individuals who require care at home for over 120 days must enroll in a managed long-term care plan to receive that benefit; there is no more Medicaid fee-for-service coverage for home care except for certain exempt populations. Here also Mindi felt overwhelmed with the available information and often unsure as to what she should be doing next. Mr. Rausman, as the family’s geriatric-care manager, guided Mindi through this process. From the available plan options, Mindi settled on a long-term home-care program.
After a few months of uncertainty, home-care bills, stress, and a bit of a learning curve (for Mindi), Mrs. Shapiro was able to return to her own apartment. Mindi no longer pays for the home health aides out-of-pocket and her mother is getting the level of care that Mindi feels comfortable with. The spend-down funds are placed into Mrs. Shapiro’s pooled income trust, from which Mindi is able to pay Mrs. Shapiro’s utility bills and a part of her rent.
“It wasn’t easy. It’s still not easy. Every day I wonder, ‘How long will I still have her with us? How long will she be able to remember me?’ She has good days and bad days, but I can see her going down slowly. But I’m grateful that I found people who took me by the hand and guided me through all of this, so that at least I can get Mom her care and she can live in her own home, among her photographs and tchotchkes, for as long as she can.”Â v
*NOTE: Names have been changed.
Sam Rausman, LCSW-R, is the owner of Geriatric Resource Consultants, LLC, a licensed home-care agency in Brooklyn. He is a certified case manager and an aging-care professional. He can be reached at 718-998-1999.