IN THE SUMMER OF 2001, my father was diagnosed with terminal colon cancer, at the age of eighty. Given only a few weeks to live, he was comfortably and properly situated in a military hospital. Yet despite the fact that he was a retired Air Force officer, hospital management began to pressure my mother, sister, and me to move him to a private nursing facility. I was confused and upset; I knew that he probably had every right to stay put, but I hadn’t the faintest idea how to argue his case. So a couple of days later, we found ourselves moving my father to a nursing home, setting up hospice care, and trying to negotiate the labyrinth of Medicare coverage for both. Small wonder that Dad quietly expired in his sleep after his first night in the home; he didn’t belong there in the first place.
According to the highly respected Atkinson Dinner Party Poll, I’m not the only one who’s been in—or will be in—this predicament. Indeed, it seems many Texans are woefully unprepared for what has become the state’s fastest-growing and least appreciated health care problem: taking care of Mom and Dad. Consider these statistics from the Texas Department on Aging (or maybe just consider the fact that Texas has a department on aging): There are 2.7 million Texans over age 60; a third of those are over 75. By 2020, the number of over-60’s will have doubled (and then will almost double again by 2040). The vast majority of these seniors will need some form of care before all is said and done, yet the financial picture is frightening. Prescription drug costs continue to escalate, Medicare and Medicaid are in rough shape, and even bad nursing homes can be expensive.
The fact is, sooner or later some degree of responsibility for your parents is going to fall to you. Will you be ready when that time comes? Here are nine rules for navigating this very rocky road.
1.Remember, for you too it’s only a matter of time. The first thing everyone can do is plan a little better than many of our parents did for the passage to elderly status. A couple of years ago, my wife and I bought long-term-care policies, which at age fifty or so cost only about $500 per year per person. That’s a bargain if you consider that they are adjusted for inflation and will cover most of our care when and if we need to go into a nursing home. We’ve also had two financial planners review our asset portfolio to see what else we need to do for a worst-case scenario. Both exercises are about as much fun as a root canal, but they’re easier for you now than for your loved ones later.
2. Don’t panic, and keep your expectations low. One of the main problems with taking care of parents is that we have trouble accepting that they’re getting old in the first place—and that a certain degree of falling apart is biologically unavoidable. But just because they can’t see or hear or walk or remember as well as they once could doesn’t necessarily mean that we need to send them off to the home at the sound of the first dropped dinner plate.
“The thing that confounds this process is respecting the rights of the elderly person,” says John Willis, the Texas state ombudsman for long-term care of the elderly and a recognized expert in the field of caregiving. “You need to base your decisions on them, not on you.”
Try to remember that our parents have every right to be treated as fairly as we were treated by them when we were young and helpless (or as fairly as we wanted them to, anyway). As I have learned with my mother, the elderly can adapt to their limitations and learn to live safely within them, and frequently this is more easily done in the familiar surroundings of home than in a retirement facility. Besides, in many cases, parents themselves may know best when it’s time for a change. In the case of my wife’s parents, for example, her mom was the one who finally blew the whistle and introduced the prospect of moving to a retirement home because of their increasing frailty. A good thing too, as within the year my father-in-law was diagnosed with Alzheimer’s disease. Obviously, she had sensed the gravity of the problem long before any of us had.
3. It doesn’t have to be rocket science. Before the time does come that you need to find additional caregiving for your parents, memorize the phone number of the Texas Department on Aging (800-252-9240; the number automatically rings the office in your region). A real diamond in the rough of a resource, with information on free services for the elderly and Medicare and Medicaid coverage, the TDOA makes do-it-yourself management possible. Their regional ombudsmen can help you find a nursing home by zip code and provide you with its demographics, ownership information, services provided, and most important, any problems the facility has had with tenants or regulatory agencies. That’s a lot more than you can easily learn about the average hospital before you go in for surgery, so use it.
4. If it begins to resemble rocket science, hire someone to help. The elder-care marketplace is booming, and as a result, plenty of new businesses are ready to assist you. This may seem like a shirking of some cosmically assigned duty, but third parties can be valuable when dealing with Mom and Dad becomes overwhelming. For example, if you’re being strangled by regulatory red tape, you can hire what’s called a geriatric case manager. For a fee ($200 up front for an assessment and then anywhere from $200 to $1,000 a month), these professionals can assess your parents’ care needs, figure out the best placement within your budget (retirement home, home care, assisted living, nursing home), troubleshoot with Medicare and Medicaid or your managed-care company, and coordinate various elements of home care.
Another invaluable third-party resource is a lawyer. One can help you and your parent create a will, a living will (a document that allows your parent to declare his treatment preferences if he becomes gravely ill and incapacitated), or a flexible power of attorney (a similar document that empowers you to make medical and other decisions for him if he is incapacitated). Get these out of the way now, and you won’t have to panic down the road.
5. Be discreet about the money thing. The knee-jerk tendency is to assume at the first hint of frailty that your parents need to have the checkbook taken from them. Yes, there are plenty of predators out there ready to capitalize on your parents’ diminishing business acumen; however, intervening is a touchy strategy. As author Virginia Morris writes in her definitive and exhaustive How to Care for Aging Parents, “This money belongs to your parent, not to you. If . . . the money is disappearing because of decisions she is making which you believe to be foolish . . . resign yourself to the situation and accept the fact that you will never inherit any of her savings.” Not everyone shares such a cut-and-dried opinion. I, for one, feel that you should be generally aware of major new investments—as in that long-term-care insurance someone tried to peddle to my mother. But otherwise, don’t force the issue until they ask for help.
6. Being old is expensive. Figure out the entitlements now. If you’re lucky enough to have parents with a large nest egg, then your “caregiving” may amount to little more than helping to make prudent choices about retirement facilities. But even if your parents have modest or no savings, there are still ways to finance long-term care should they need it. One of the least understood facts in the misunderstood world of public entitlements is that in some instances you can qualify for Medicaid-sponsored care without having to give up the family home or all of your parents’ hard assets (another situation in which a lawyer is helpful). And even if you don’t qualify, a hard asset like a home or a life-insurance policy can be used to generate funds to pay for long-term care.
7. Don’t you get sick too. If the caregiving ultimately comes down to you for financial or personal reasons, be sure to look out for your own health. A 1997 survey by the National Family Caregivers Association found that 61 percent of caregivers reported some degree of depression. Children caring for a parent with dementia were twice as susceptible as those of us who were providing advice to an individual who is in fairly good shape. Still, all caregivers are at risk because of increased stress, lost sleep, vague but persistent feelings of inadequacy, and difficulty adjusting to “being a parent to a parent.” So if you find yourself not eating or sleeping right, or have other signs of depression, talk to your doc about it.
8. Your siblings are your best asset. Make sure you’re sharing the load.
Sad but true: At some point, it’s going to be more and more difficult to communicate with your parents, even if it’s just the mild dementia that afflicts about 50 percent of people over eighty. So if you have brothers and sisters, it’s time to start communicating right now and building a united front. Sharing the load can make the whole business a lot easier. Come up with a plan that gives responsibility to everyone in the family, so that resentment doesn’t build up in those carrying a heftier burden.
9. And in the end . . .
Unfortunately, you need to plan not only for your parents’ old age but also for their death. This is a bit more complicated than you’d think. As Jim Comer, the author of Parenting Your Parents, points out in his book, a handful of obnoxious but important questions have to be answered now so that you don’t have to panic at the real last minute. For starters: What is the name and phone number of the family minister, priest, or rabbi? Would your parents prefer a funeral, memorial service, graveside ceremony, or no service at all? Do they want the service in a church or in a funeral home? Do they want an open or a closed casket? Would they prefer cremation?
I don’t know about you, but I honestly didn’t know the answers to even half of those questions before my father passed away two years ago. As Comer says, whether you’re the person who’s growing older or the person charged with the caregiving, “Denial is the main culprit.”