We all know the two biggest lies:
“The check is in the mail.”
“Of course I’ll respect you in the morning.”
Do you know what the third is?
It is a lie we never intend to be a lie: “I’ll never send you to a nursing home.”
We want to take care of the parents who took care of us. We think that we can. We think that there will be skilled people available to help us. We think that our parents’ savings will be enough or, if not, that Medicare or Medicaid will pay.
We don’t realize that we will wind up trying to solve a 21st-century problem with 20th-century tools – and that our parents may someday need supervision and skilled on-call care 24/7.
Medicare and Medicaid were created in 1965, when most people died of acute illnesses shortly after onset.
Today, people live with chronic conditions for years…and years….and years.
After about two years, family caregivers themselves are likely to become ill. Living with a baby monitor and an occasional “break” to run to the pharmacy cannot go on forever, no matter how good our intentions are.
What can we do?
First, we can get help from the very beginning, and ask for more than we may need in the short term. What we can handle for six months will undermine our health – and our finances — over six years. People who see us functioning just fine during those first six months may assume that we can continue like that forever. It just isn’t so. Before siblings or children get lulled into complacency, we need to get them in the habit of stepping up. The primary reason that people go to nursing homes “early” is that their families are exhausted.
Other people do not see or experience what the person providing hands on care does. But they can be made aware of it. Someone who lives within a couple of hours can come every weekend – or two people can alternate, coming every other weekend. Someone who is not providing hands on care can handle the bills, do the grocery shopping, take our parent to doctors’ appointments and pick up medicine and medical equipment. Even someone who lives out-of-state can help, calling on a regular schedule and doing internet searches of medical conditions, home health care agencies, assisted living facilities and nursing homes. We can get in the habit of having regular, monthly meetings in person or over the phone to exchange information and make sure that we are all on the same page.
This includes being on the same page financially. Any Durable [Financial] Power of Attorney should restrict the agent from changing the estate plan and require the agent to provide an accounting and receipts within 10 days of receiving a dated, written request from other family members, our tax or financial adviser or attorney. This can prevent family disputes and keep everyone on board and helping out. No one needs to fear that someone is taking advantage of a person who is ill – to their detriment and to that of other family members.
Second, we can “get real”. For now, Medicare and Medicaid home health care may help up to 40 hours per week – if the hours can be scheduled. In another three to five years Medicaid home health care will likely disappear. Even before then, our family member’s needs may not fit a schedule.
How do we meet our parents’ needs and their wishes?
We can make sure that they have a Medical Power of Attorney, an Advance Directive, a Declaration of Guardian in Case of Need (excluding the nursing home, assisted living facility and any paid non-family caregiver) and a Mental Health Directive (because 1/3rd of nursing home residents become temporarily demented due to a medication error). If our parents want to die at home, we can remind them to ask their doctor for an Out-of-Hospital Do Not Resuscitate Order and post it on the refrigerator.
We can look at assisted living facilities and nursing homes before they are needed. We can start with tools such as www.medicare.gov/nursinghomecompare, nursinghome411.com, projects.propublica.org/nursing-homes/ and the licensing reports of the Texas Department of Health and Human Services (“HHS”).
We can visit in person, on weekends and evenings when staffing is light, as well as on a weekday when we can talk with the admissions director. We can ask about staffing (largely certified nurses’ assistants, in Central Texas graduates of an eight week course at Austin Community College). The standard 12 residents: 1 staff member may well mean that there are no adequately staffed Medicaid nursing homes in the State of Texas, particularly on weekends. But some are visibly better than others.
We can make a commitment to visit and get others to also: the best predictor of good nursing home care is frequent visits at unpredictable times.
We can make sure that whoever is giving up their job, their chance for a promotion, their social life or their sleep to provide hands on care is somehow compensated. While most people shy away from entering into a Family Caregiver Agreement with family, the VA will respect it and, if the person is paid by a home health agency, Medicaid may as well. If this is not an option, a “Lady Bird” Deed or a Transfer on Death Deed can be used to transfer the home to the caregiver when the person dies. As of September 1, 2017, title to a vehicle can also be transferred on death.
Third, we can forgive ourselves for being less than perfect children, just as our parents had to forgive themselves for being less than perfect parents. Anyone, in any situation, can only do the best they can with the resources and knowledge they have at hand.
We cannot promise, “I’ll never put you in a nursing home.”
“I’ll always be there for you.” is a promise we can make – and keep.
Estate Planning attorney, Terry Garrett, is a member of the National Academy of Elder Law Attorneys and is active in the Texas and Austin Bar Associations. She graduated with honors from Cornell University. She was on the Dean’s List at Wharton Business School. She earned her J.D. at Columbia Law School, receiving the Parker Award and a Mellon Fellowship.
She assists families of people with special needs, people planning for the retirement years and people administering estates.