Keep Sheila Home: 72-Year-Old Piano Teacher with MS
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>>Background
My mom, Sheila, is a 72-year-old piano teacher. She has been living with Multiple Sclerosis (MS) for over 35 years. Despite her challenges, she continues to thrive at home, showing remarkable improvement thanks to therapy and the unwavering support of dedicated caregivers.
However, the out-of-pocket caregiver costs can exceed $120,000/year, and our family can no longer shoulder this financial pressure alone.
We are seeking to raise $100,000 to reduce this financial strain. 100% of the funds will go toward paying a fair and equitable wage to hired caregivers who help my mom with her daily needs.
>>Why Your Support Matters
1. Life Savings is Gone: My parents have spent all of their life savings, most of it on at-home care for my mom over the last 5 years.
2. Insurance Won't Pay: Health insurance, including Medicare, does not cover the cost of caregivers. Medicaid is complicated
3. Long Waitlists and Denials for Coverage: My mom has been on a 7-year waitlist for Medicaid assistance to cover part of these services, with frequent denials.
4. Comprehensive 24/7 Care: My mom requires full assistance with essential daily activities of living like dressing, toileting and getting around.
5. She still thrives in the community: Despite the challenges, she continues to teach virtual piano lessons and swims daily—thanks to the dedicated help of her caregivers.
6. Family can't afford it: Immediate family members have shouldered the financial hardship of covering my mom’s care. This situation is no longer sustainable.
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Every contribution, no matter how small, helps fight this injustice and keeps my mom thriving in her community.
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>>Frequently Asked Questions
1. What do you mean by “their life savings is gone”?
Both of my parents worked hard for over 30 years to provide a middle-class life for our family. They always spent less than they earned and avoided debt. While many retirees look forward to relaxing and traveling, my parents had to use all their money, including retirement savings, on care. When we say “life savings is gone,” we mean their accounts are empty. They now rely on a small government pension and social security to make ends meet and depend on family for financial support for caregivers.
2. Does insurance cover these costs?
No. Due to the inequities in our healthcare system, our family must bear these costs.
- Medicare and Health Insurance: No. According to Medicare: “Medicare and most other health insurance, including Medicare Supplement Insurance (Medigap), don’t pay for long-term care.”
- Long-Term Care (LTC) Insurance: No. According to long-term care insurance specialist, Mark Barron, “If someone has been diagnosed with Multiple Sclerosis, Alzheimer’s, dementia, Parkinson’s, AIDS, or several other medical issues, they can’t buy long-term care insurance.” LTC agencies know that out-of-pocket costs for degenerative diseases are incredibly expensive, so they don’t insure them. Source
- Regular Medicaid: No. To qualify for the type of Medicaid that would pay for at-home services, my mom would need to have a maximum income of $300/month and total assets (excluding the primary residence) of $2,500. Let those numbers sink in.
- Community Medicaid: Maybe. Fortunately, there is a Maryland-based Medicaid program called the Home and Community-Based Options Waiver Program, which has a more reasonable income limit. However, my mom has been on this waitlist for 7 years. While she may become eligible for services in 2024, Medicaid will only cover a portion of the needed services, still leaving a significant out-of-pocket expense.
More details about Medicaid eligibility can be found here: Medicaid Eligibility in Maryland.
3. If things are this bad, why doesn’t she go to a nursing home? Don’t they pay for all of this?
- Nursing homes aren’t designed for people with degenerative diseases who are still active: My mom is 72 and ready to live a full life. She still teaches piano and goes to the pool daily. She wants to connect with people her age, and enjoy her independence. There are no medications for her type of MS; she just needs assistance with Activities of Daily Living. She isn’t bedridden, making this situation incredibly tricky.
- Medicaid will pay, but there are still additional costs: While Medicaid would cover the costs of a nursing home, we would still need to hire private aides to provide additional services due to her unique needs.
I invite you to visit a Medicaid-approved nursing home. It isn't what you see on the brochures. Unfortunately, the level of care provided is often inadequate for someone in my mom’s condition.
Our family is committed to keeping my mom at home, where she can continue to thrive and live the active community life she desires.
4. What are Activities of Daily Living (ADL)?
There are 6 common ADLs. Bathing, Dressing, Eating, Personal Hygiene, Toileting, Transferring (getting in and out of a bed/chair)
My mom needs full assistance with all 6 ADLs.
5. How will the money be used?
100% of the funds raised will be used to pay caregivers a fair and equitable wage.
6. The amount of money you need seems incredibly high. Why is it this much?
In the Washington D.C. area, the median hourly rate for home health aides is $29.25. Currently, my mom needs help 12 hours a day. Here’s the breakdown:
• Hourly rate: $29.25
• Daily cost: $29.25 * 12 hours = $351.00
• Weekly cost: $351.00 * 7 days = $2,457.00
• Annual cost: $2,457.00 * 52 weeks = $127,764.00
For the last 10 years, our family has been financially savvy by acting as a caregiver employer, providing direct care, and finding informal caregivers to save on costs. However, this is no longer sustainable for the family, which is why we are launching this GoFundMe campaign.
7. Why can’t other people at home provide direct care to save on costs?
Her husband, Luis, is physically limited and unable to provide direct care. Fortunately, he can still manage grocery shopping and other household chores and maintenance to offer indirect support.
I (David) live out of state, while my sisters, Miriam and Rebecca, juggle full-time jobs and still push themselves to the limit to support my mom in every way they can. Our family is striving to find a care solution that best supports our mom, considers our financial situation, and allows the children to live their own lives without being heavily involved in caregiving.
8. Does this benefit people outside of Sheila?
Yes, this helps lift the extreme emotional and financial weight the family has been carrying, while also providing a fair and equitable wage to caregivers.
9. This whole situation is crazy. How come I haven’t really heard of it?
There are several unique factors that have come together to create this challenging situation:
- Middle-Class Struggle: Our family was middle class. If you are very poor, the system is set up to support you through Medicaid in a nursing home. If you are rich, you can afford to pay out of pocket. People in the middle are stuck.
- Long-Term Neuro-Degenerative Disease: My mom is 72 and has had MS for 35 years. She will continue to need help for (hopefully) many more years. This isn’t an acute issue, and unfortunately, insurance does not cover long-term care.
- My Mom’s Will to Live: My mom is ready to live! She still teaches piano lessons, goes to the pool, and ready to contribute to her community. This isn’t an end-of-life situation for a nursing home.
- Systemic and Policy Issues: After feeling defeated when hiring several Medicaid lawyers, one summed it up best: “Money goes toward long-term care facilities, not to keeping people at home.”
Organizer
David L
Organizer
Greenbelt, MD