If you are a person who intends to live a long life, or if you know someone who is already living or intends to live a long life, gather round.
More than 5 million Americans 65 and older has some form of dementia, according to the CDC. That number is expected to triple by 2060. TRI-PLE. Basically, if it hasn’t hit you yet, it will. And when it does, if you stop reading here you will learn the hard way that you are basically stuck between a rock (not ideal care options) and a hard place (going literally broke to pay for care). And you’ll also miss the 80s flashback at the end of this post.
Long-term care for people with cognitive diseases such as Alzheimer’s and other dementias in the United States is totally broken. This may be true for other conditions, disabilities, and age groups as well, but dementia is what I know. Please refer to our broken health care system for myriad examples of similar dysfunctionality.
A couple of weeks ago I spoke with Paige Sutherland from NPR’s On Point about my experience with long-term care. The episode – Is it time to rethink how we care for dementia patients? – focused on the quality of care for those with dementia, highlighting unique places that have done it differently (village-style settings, more autonomy than is perhaps typically offered in memory care). Check out it and other related resources on my Podcasts, Articles, Books and Websites page.
Personally, it was heartening to hear my mom’s story and voice out in the broader world again. She doesn’t speak much and hasn’t used a phone in easily more than five years so unless you visit her or work with her, her disease has cut her off from the outside world. To hear her name and voice on the radio was nothing short of mind-bending and thrilling.
I came away from the interview, though, realizing once again how complicated and multifaceted dementia and dementia care is. This particular OnPoint episode highlights some of the issues and opportunities with the disease and long-term care, but all the myriad tentacles that touch a family’s life with a dementia diagnosis really requires a multi-part series.
Dementia, of which Alzheimer’s is one version, is a slow-moving tragedy for most (early onset tends to move more quickly). While it slowly destroys your loved one’s mind, it disrupts family finances, implicates the U.S. medical system (which seems bent on punishing people for getting sick through no fault of their own), requires patients and their families to go bankrupt to receive government support. Let’s not even talk about lost wages (and ultimately professional trajectory, in some cases – not to mention sanity) for the family member/person responsible for shepherding the care of their loved one. Or the fact that many private caregivers (“home health aides”) sent through various agencies do not make a living wage, do not have health insurance of their own, do not receive professional training, do not have retirement plans. They typically work multiple jobs just to survive, often taking advantage of having a client with cognitive impairment to nap. Many (most?) are immigrants. Most don’t drive. And none are authorized to give medication. And this just scratches the surface.
Fun facts:
- The federal government does not recognize power of attorney (though everyone else does). As power of attorney, one has access to bank accounts and all sorts of decision-making power, but one can’t get a Medicare statement to appeal a charge or an end of year social security statement for tax purposes without cooling one’s heals for several hours at a Social Security office. Time, you know, generally, that caregivers don’t have to spare.
- You have to be broke to get a Medicare bed at an assisted living facility. And there’s a five year look back so it’s not like you can move around assets you may have wanted to save for, I don’t know, your kids’ or grandkids’ college tuition or your own retirement or something like that. I mean, who doesn’t want to face bankruptcy in their twilight years? Note: I spent a lot of time trying to double-check this and to understand the Medicare website. I used a website called Boomer Benefits that translated what the Medicare site was saying into English I could understand. I am relying on them for accuracy at the moment. As a not-expert in geriatric care or law, this is how much of the whole last ten years has gone. Research on the internet, read lots and lots, talk with others, get the best understanding I can muster. An elder law attorney would have answers, and also billable hours. See footnotes below.
- How about losing out on both your family home and potential income for a loved one’s care due to a parent who didn’t pay their mortgage, unbeknownst to the children, and the house is foreclosed on. Listen here for more on How An Older Person’s Money Errors May Be a Sign of Some Sort of Dementia.
- If you choose – or need to go to – a private care facility (see above: not yet broke), and by some miracle your loved one just keeps on living for no good reason other than that they have this crazy will to survive, you will almost undoubtedly run out of money before anyone steps in to help you. In my case, I created a budget for my mom’s care expenses early on and I update it annually. I always trend her costs out assuming 3% inflation annually, which is typically a fairly reasonable rate. Guess what I did not factor into my budget? A pandemic. Inflation. Needing to increase staff wages to retain them (honestly, surely that is a good idea anyway. Why is it that caregivers and teachers and all the people who do the most dedicated, intimate, meaningful work for our families and loved ones are paid the least? How messed up is a financial system that values money over, I don’t know, values?).
The truth is, you don’t usually know much about this until you’re in it. And when you are in it, it’s a really tough time to learn about it or to change the status quo. I was thrown into this role by circumstance, and I do my best to honor my mom and her story. Along the way over the last 10 years I’ve tried to improve, to the extent possible, the road ahead for others in similar circumstances through my work as a Patient Ambassador, as a writer, when opportunities like NPR’s present themselves, and when people call me asking about the care my mom receives because they need to consider what comes next for their loved one.
If 9 to 15 million Americans are going to be impacted, depending on who you ask, this disease is going to affect us all one way or another eventually. We need to work together to improve care models and support, both financial and emotional, to help families function until there’s a cure. It’s a terrible feeling to be forgotten.
I know this isn’t about dementia, but it fits (and it’s a great song):
Footnote
“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.
However, if you are in an assisted living facility or nursing home, Medicare still covers all of your Part A and B medical needs. This includes doctor visits and medically necessary therapy services, plus your prescription medications if you have Medicare Part D.”
Put Your Own Oxygen Mask on First 