Tag: #nationaldomesticworkersalliance

Picking up from Don’t You Forget About Me Part III, which is now 2 years old because, well, I was stuck.

…I love where my mom lives, and also…

…it costs a fortune. Like mind-blowing amounts of money.

The exorbitant cost comes up in the NPR episode I was interviewed for (spoiler alert – I said it cost $100,000 a year. That was a lowball estimate that is now 2 years old – and, another spoiler alert, it doesn’t ever get less expensive). Over my years of caregiving for my mom, I have investigated options to save money for her care every which way possible (they are quite limited). You need to be full on flat broke (like $2000 left in your bank account) to qualify for Medicaid. And then many private care facilities don’t accept Medicaid.

What happens when you don’t have the money to pay for care, in home or at a facility? And then what happens when you run out of money? You know how moving is hard? And moving people with cognitive issues is really bad for them because it’s disorienting and confusing? And then often there are physical ailments that come with aging on top of it? If by some miracle your loved one just keeps on living for no good reason other than that they have some crazy will to live, you will almost undoubtedly run out of money before anyone steps in to help you. I was advised to get in touch with Medicaid when it looked like my mom had about 6 months of money left. Until then, you’re on your own.

“Most assisted living facilities provide what is considered “custodial care.”

Custodial care typically includes assistance with activities of daily living. These are tasks like eating, bathing, dressing, and using the bathroom. In some cases, it can even include health-related activities people usually manage on their own. Some examples would be taking daily medications or using eye drops.

Custodial care can be either long or short-term, depending on your condition. It can be provided in an assisted living facility, nursing home, or even in your own home with a home health aide under certain circumstances.

Medicare typically does not cover any costs associated with custodial care if that is the only type of care you need.”

Medicare covers Part A and B medical needs, including doctors visits, medically necessary therapy, and prescriptions (if you have Medicare Part D). Supplemental insurance through an organization like AARP is a good idea to pick up the balance of medical coverage because there always seem to be copays and other things that Medicare doesn’t fully cover (hospital care costs are 80% Medicare, 20% supplemental last I checked; yes, it’s confusing. Very). Does long-term care insurance make a difference? The jury is out. Check out this website about long term care insurance and you tell me.

So, if you don’t qualify for Medicaid or you just prefer a private facility for any number of reasons, where does that leave you? In the uncomfortable middle is where it leaves you. Neither Medicare nor supplemental insurance covers a penny of the 4 main categories of cost for a private assisted living facility, which include:

1. Daily rate – essentially this is rent charged as a daily fee on a monthly basis, basically a “tenant at will” set up;
2. Service package – this refers to the level of care the resident requires, from needing to be fed to needing help with bathing, dressing, transferring from bed to chair and back, etc.;
3. Medication package – medication, at least in Massachusetts, has to be distributed by a qualified nurse from bubble packs provided by a pharmacy;
4. Continence management – in a true cradle to grave twist, many of us will return to diapers at the end of life.

If you live in a private care facility and, against all odds, you end up living longer than expected, you do in fact get kicked out when you can no longer pay. I thought there was no way that would never happen, but I was wrong. Most facilities work with residents to try to make it work financially, but what if the parent is nearing 100 and the kids are in their 70s and retired, too? At a certain point something has to give. Because who has a spare million dollars?

All of the above is true in a world where the US government funds Medicare and Medicaid. Should that change, an already unsustainable, true stuck-between-a-rock-and-a-hard-place situation simply gets worse. There has to be a better way than the expectation of bankruptcy as the health care end game. This reality requires taking regular deep breaths to prevent hyperventilating. Once calm, it’s time to think about realistic, actionable solutions and working with your senators and representatives to make those a reality. Also continuing to fund Alzheimer’s research is a very good idea. This is not an issue that is going away until someone figures out how to stop it.