I would like to tell the story of my mom, a sweet and loving wife and mother who was diagnosed with younger onset Alzheimer’s in October 2013 at the age of 57. When you hear about the toll that Alzheimer’s takes on a family, you hear about the emotional stress of watching your loved one slowly lose their identity, their inability to perform normal daily functions, and how depressing it can be when they no longer recognize their loved ones. You may also hear about the financial costs, both direct and indirect, and caregiver stress. Our family has experienced all of this over the last six years.
Once my mom declined to the point that my family couldn’t take care of her, we brought her to an assisted living facility in Reston to be closer to us as a cost of $10,000/month private-pay as they had no long-term care insurance, disability or social security due to their young age. After three years of private pay we knew we would be forced to apply for Medicaid as the money was running out. We received approval for Medicaid in August of 2018, and based on Medicaid policy, my mom had to be placed in nursing home within 30 days or she would lose the benefits. We found a nursing home in Fairfax and moved her in early September. Shortly after her arrival my Mom took a fall and the facility told my family that their facility was not a safe place for my Mom without 1:1 care. As a result, they required our family provide 24/7 1:1 coverage for her, something that Medicaid does not cover since she is in a skilled nursing home. At $25/hour for round the clock care, they were requiring us to pay $18,000/month. As a compromise, we have been providing 12 hours of care, but it is financially devastating. Finding a facility to take someone on Medicaid is not easy, and we have not been able to find alternatives because they deem my Mom a fall risk. We told the facility she is in now that we can no longer afford to pay for 12 hours a day of 1:1 care and their response was to issue a 30-day discharge order. Although the nursing home insists that a home discharge would be considered a safe discharge, our home is not a safe environment for my mom as she requires a high level of care and I have 2 young children. We have been working tirelessly every day to find a solution. Although there are many facilities in Loudoun County with memory care units, none of them accept Medicaid and are all private pay. More and more families will be in this situation as their loved ones are being diagnosed earlier and earlier and Medicaid is unable to provide an appropriate and safe space for them to reside.
I wish for so much better for my Mom and all of the 5.6 million people in our country living with Alzheimer’s disease.