Aging and caregiving - they're unavoidable but few people are prepared
There are some very hard truths about getting old and taking care of others but no one seeks them out. Here they are.
Two new reports from AARP should set off smoke alarms and whatever other warning devices consumers have, as they illustrate the dire situation that awaits millions of Americans are they and their friends and families age.
The first finds that home care and assisted living costs have surged nearly 50 percent since 2019, wiping out a decade of progress in long-term care affordability for middle-income older adults.
The second finds that family caregivers now provide more than $1 trillion worth of labor each year in the United States. Most of this work is unpaid, yet it forms the backbone of the nation’s long-term care system that is essential to helping millions of older adults live independently at home.
The two reports are closely related, since as assisted living costs advance, more consumers must turn to family and friends for crucial in-home care. When that happens, millions of consumers learn an unpleasant truth:
Nursing home care and in-home care for chronic diseases are not generally covered by Medicare. You need to know that now, not later.
The hard truth
There are exceptions but in the U.S., infirm elderly people are largely on their own and often end up relying on their families or friends for unpaid services that are physically taxing, emotionally tiring and often unappreciated.
Although this message is repeated ad infinitum, no one seems to know it and people are surprised — astonished, even — when they learn the hard truth. Part of the reason for that is that discussions about long-term care are generally couched in such abstract, dense language that the eyes glaze over.
But although it’s not pleasant, planning for your and your family’s long-term care is much more important than the price of gasoline, the cost of a dozen eggs or your choice of cellphone service. The true state of affairs is generally learned through experience — and experience, as we know, is a hard teacher.
Families often sacrifice their financial stability, unpaid caregivers ruin their emotional and physical health and the infirm elderly are consigned to a solitary existence marked by inadequate nutrition, social interaction and help with what social workers delicately call the tasks of everyday living (bathing, toileting, etc.)
The solution is not to spend $20,000 on a walk-in bathtub or to check in to an assisted living facility without carefully examining the financial obligations it entails. We can’t go through all the machinations in this short story but I’d like to cite a few personal experiences of the last few days that show what aging adults are up against in this country.
Yesterday, a neighbor asked me for guidance. A friend had approached him for help after being diagnosed with dementia. The friend has no family other than an ex-wife from many decades ago and has completely lost touch with her. His finances are modest and he lives in a rental apartment.
He wanted to know who would take care of him as the dementia progressed. I did what I do several times a week and referred my neighbor to the Area Office on Aging. These are local agencies — sometimes called Area Agencies on Aging or something similar — and their sole function is to help family caregivers. They are everywhere. Every city of any size has one and a simple Google search will find it for you.
Having said this, I do not know of a single person who has ever taken my advice and called their AOA. Families in desperate straits routinely ignore my advice and wind up going to a payday loan office or buying a useless “healthcare policy” disguised as insurance or they simply keep asking for advice until they get an answer they like, which is nearly always wrong.
Here’s another one. An old friend and coworker recently moved with his wife to a new home in a new city where he basically knows no one, leaving his longtime home hundreds of miles away vacant. He came down with a respiratory infection and, weeks later, was still bedridden, getting weaker and aggravating other chronic conditions.
He turned down the suggestion of a few weeks in a rehab center where he could regain some of his strength and didn’t want to call the AOA. So he is now existing in limbo, making life difficult for himself and his wife, who has become a caregiver the way most people do — suddenly.
The caregiver’s lot in life
Life can change in an instant. A wrong step off a curb can leave you paralyzed. A careless turn in traffic can get you t-boned. A wayward clot can lodge in your brain or heart with life-threatening effects.
And, just as suddenly, you can become a caregiver. It doesn’t matter if you have a Ph.D., a black belt or can bench press a grand piano. You are going to be changing bed sheets, cooking bland meals, giving sponge baths, giving multiple medications and staring at the wall for many more hours than you realized exist in a single day.
As the AARP study found, and as everyone in the aging field knows all too well, most caregivers are unpaid volunteers — family members or close friends. It’s not a job anyone applies for and it’s one that’s very hard to resign from. At the end of it, instead of a gold watch, you’ll have back issues, depression and even less money than you had at the start.
I’ll tell you a secret: People in the aging services field are boiling mad but hide it well. They’re mad at the federal government, at their local governments, at insurance companies, the medical professions and — most of all — at the people they’re called on to help every day who have done nothing to educate themselves or learn even the simplest facts about chronic care in their country. They’ve voted for politicians based on fantasies, unfounded fears and bigotry.
What to do
There are about 59 million caregivers in the U.S. and every one of them wishes they had known what they were signing up for. Checking out the info at your local AOA now can help you avoid surprises down the road.
There’s nothing we can do to avoid old age but there are some steps we can all take that will make later life better for us and for the family members who we hope will be there as caregivers when and if we need them. Here’s my personal list of recommendations:
Stay in shape. You can’t help yourself or anyone else if you can’t get out of a chair unaided or walk across the room by yourself. Every city has senior centers. They all offer senior fitness classes. Go take one and then take another one. Stop smoking, for God’s sake.
Start hoarding money. You will need a lot more money than you think to make it through old age, supporting yourself and others. Don’t waste your assets on walk-in bathtubs, elevators, giant SUVs or expensive cruises unless you have $1 million or more in a diversified, professionally managed portfolio.
Buy long-term care insurance if you can afford it. Warning: it’s expensive. That’s because long-term care is astonishingly expensive. You’ll get a better rate if you buy it when you’re still relatively young and healthy. It’s better to have a policy that covers part of some things than to have no policy, which covers exactly nothing.
Don’t ask your friends for advice. They probably know less than you but will be happy to give you as much misinformation as they can dream up on the spot.
Visit your local AOA online or in-person. Find out what specifically is available in your area. Get to know the home healthcare companies that supply paid helpers who may or may not be much help. Visit a couple of assisted-living facilities and look at their prices, if you dare. Talk to your doctor about your long-term health prospects. Ask him or her to be honest. You need to know what’s coming.
I’m sorry to say this but Americans are so mesmerized by advertising, marketing, “influencers,” flimflammers of every stripe and political theater that they just don’t hear enough unpleasant truths. I’ve stepped out of my usual third-person role to deliver a few. I hope you find them useful. I’m not sorry if you’re offended.