Worried. Overwhelmed. Exhausted. Stressed.
The local chapter of a health advocacy group did an informal survey of their members aimed at understanding the experience of family caregivers, those people taking responsibility to provide care to a loved one with a health need. These are spouses, adult children, nieces and nephews, even elderly parents caring for an adult child. These words describe their experience.
Caring for someone else full time is an enormous undertaking and usually so demanding that most caregivers lose sight of taking care of themselves with breaks and rest. Mixing in the emotion of caring for a family member while watching them age or watching their health decline makes the job feel even more consuming. Regrettably, these roles change the dynamics of the relationship too, making time together more about the checklist of tasks instead of having time to reserve for simply sharing company or having fun.
Families explore help from numerous resources and land on the decision for a family member to provide the care for a number of reasons. Sometimes it’s comfort, preference, or fear of the unknown, but the majority of the time it’s because of the cost.
The 2019 Genworth Cost of Care Survey conducted by CareScout® suggests that in home companion level care for regular activities of daily living like dressing, bathing, meal preparation, etc. averages a cost of almost twenty five dollars an hour. For a family wanting to hire a caregiver for 40 hours per week that totals $4,200 per month, or well over $50,000 annually. Regardless of a family’s income or savings, those are large line items to add into any budget.
There are some resources available to pay for long term care, the umbrella that in-home care falls under, but they are sometimes misunderstood. Medicare is usually the first to be explored. This traditional health insurance available to everyone at the age of 65 does cover long term care, but very specifically for rehabilitation in a nursing facility after discharge from a hospital stay, and only for a maximum of 100 days. Some families have long term care insurance which will sometimes pay for in-home care, but this benefit is not owned by the majority. There’s also the option of paying for in-home care with savings or by liquidating other assets but the numbers suggest that even a healthy nest egg could be depleted quickly.
In Delaware, the Medicaid Long Term Care Program covers all three levels of care – skilled nursing facilities, assisted living facilities and home based care. In-home care falls under their Home and Community Based Waiver Program (HCBW). This payor source is regularly confused as unavailable. Although it’s true that there are usually steps required for a person to financially qualify, the program is used as an incredible resource by hundreds of neighbors in our community from all financial backgrounds.
In Delaware and Maryland, it often times makes sense to explore the Veterans Aid and Attendance Pension as another resource for in-home care. This income stream is approved for Veterans or their surviving spouses during a need for care, and like the HCBW, this is often confused as unavailable.
The Medicaid HCBW offers up to 72 hours per week of in-home care, based on the health care needs of the person applying. The caregiver paid to work those approved hours can be a professional, family member or friend. All of the recipient’s monthly income is retained to cover normal living expenses including but not limited to the mortgage payment, utilities, groceries and maintenance. The robust program includes a number of other benefits in addition to the weekly care hours such as adult day services, respite care, home delivered meals and emergency response systems.
Recipients are given control of choosing their caregiver(s), weekly schedule and preferred services. Families might start by exploring the numerous reputable in home caregiving agencies in our area. Fear of disliking a caregiver is unnecessary as agencies will work to pair the personalities of the client and caregiver from the start, and because if a provider isn’t a fit, families can simply request that the agency make a change. Families can also choose a family caregiver or friend to provide the hours granted. With a caregiver selected, recipients can choose their preferred schedule, like using hours in the morning to provide for a bathing/dressing routine, using hours in the evening while a primary caregiver is working, etc.
The rules to become financially eligible for the Home and Community Based Waiver Program (and Veterans Aid & Attendance Pension) appear complex and restricting. Families should consult with an experienced elder law attorney to understand the strategies available to them to become eligible for this program, while simultaneously sheltering their savings. The planning is legal, ethical, and fully disclosed to the Medicaid Long Term Care Program. Elder law attorneys have the pleasure of introducing this benefit as a viable resource to clients every day – it’s rewarding to help facilitate much needed help.
What does this mean for the family caregiver? Relief. Rest. Peace. Moments of time weekly to be able to step away and recharge so that their health doesn’t deteriorate, trust that their loved one is still receiving the needed care, and assistance with the otherwise devastating costs of care.