I didn’t watch as emergency medical technicians helped my mom onto a stretcher and took her out of the house she’d lived in for 42 years, but I knew she wasn’t coming back. Maybe that’s why, on that sunny Florida morning in June 2016, I opted to let them go while I hung back to gather my purse and keys.
That decision was one in a long line of choices I made after my mom was diagnosed with dementia in 2012. At the time of her diagnosis, she was 77 and I was 34. She was in denial and refused to discuss a care plan. I was an only child. My dad died when I was 14. My mom’s siblings were gone. All the decision-making fell to me.
A fiercely independent woman, my mom fought me on getting her help. I often refer to my interventions as a hostile takeover because I had to do it all without her blessing, and in some cases without her knowledge. I took away her car keys and took over her finances. I hired aides. When I learned that my intuition had been correct—that she couldn’t return home after that 911 call (she’d suffered a bilateral pulmonary embolism and while hospitalized forgot how to walk)—I moved her from a townhouse in a suburb of Fort Lauderdale to an assisted living facility in Fairfax, and I sold her house.
Before my mom got sick, it hadn’t occurred to me to ask about her end-of-life wishes. I was juggling a toddler and a newborn. I was preoccupied with life’s new beginnings, not its last chapter.
Now I know it didn’t have to be that way. Conversations about senior care, living arrangements and finances in the twilight years are hard, but they’re necessary. I spoke with local experts about how to broach the tough topic of end-of-life planning and the pieces every family should have in place for clarity and peace of mind—whether you’re the aging parent or the adult child.
Starting the Conversation
“Talking about death and dying is difficult in this country because we’re very death-avoidant,” says Jane Euler, an end-of-life doula and co-founder of Present For You, which offers spiritual, emotional, psychosocial, practical and logistical help to terminally ill and elderly people in the DMV. She’s also the patient and family liaison for Capital Caring Health hospice and for palliative care at VHC Health in Arlington.
Not sure how to even begin? Euler recommends approaching the subject gently and finding natural openings for a conversation.
“Say you’re talking about [how] a friend of your mom’s just died. That’s a great opening,” she says. “The first thing you want to talk about is what’s important to them as they age.” That involves asking questions about where they want to live (at home or in a senior living community) and who they want to entrust with managing their money and health care in the event that they can no longer do so.
Many resources are available to help initiate these discussions and ensure no stone is left unturned. One idea is for parents and their adult children to watch a video about advance care planning together.
The National Institute on Aging’s Advance Care Planning: A Conversation Guide has a section on how to designate a health care proxy (a person who can make medical decisions for you if you can’t communicate your wishes because of a serious illness or injury).
Euler recommends Your Conversation Starter Guide, a 12-page workbook from The Conversation Project, an Institute for Healthcare Improvement initiative that aims to normalize end-of-life planning discussions. The workbook walks through considerations such as health care preferences, and prompts the respondent to rank how strongly they feel about, say, lifesaving medical interventions.
Speaking with a trusted health care provider is another possible starting point. A primary care physician or nurse practitioner can help everyone understand a loved one’s current health concerns and family history, says Kristin Nannetti, a palliative care nurse and palliative care coordinator at VHC Health. Palliative care helps patients manage symptoms associated with chronic conditions, such as diabetes and Parkinson’s disease. It’s often confused with hospice care, which is a type of palliative care, but specifically for people who are expected to live only six months or less.
Once Mom or Dad has created a plan that stipulates their wishes, the next step is to put it in an advance directive. This legal document outlines preferences for medical care should they be unable to make decisions for themselves. For instance, an advance directive can state whether they want medical providers to perform CPR, intubate if they aren’t breathing on their own, or insert a feeding tube.
Virginia has an Advance Healthcare Directives Registry that allows families to securely store these documents digitally for free—and where clinicians can easily find them if no one is able to provide them in an emergency.
“People who have advance directives are more likely to receive the care they want,” Nannetti says. And for family members, knowing a loved one’s wishes ahead of time alleviates the stress of having to make difficult decisions under emotional duress. Having instructions removes the guesswork.
This process is seldom a one-and-done chat, Nannetti adds. “It is an ongoing conversation. It’s important [to review the plan] every few years or as your health changes or as your goals and wishes change.”
While some people may never feel ready to have this kind of heart-to-heart with their spouses and kids, the earlier they start making their wishes known, the better. “We certainly know when it’s too late,” Euler says.
Legal Ease
Advance directives are not the only legal documents that provide a framework for end-of-life care. For me, a medical power of attorney (POA) and a financial POA were almost literally a lifeline. Thankfully, my mom signed those documents years before getting sick, granting me the power to act on her behalf once she was no longer of sound mind. As a result, I was able to manage her medical care, sell her house and car, and access her bank accounts to pay for her room in the memory care center at an assisted living facility. And yes, I arranged for that room with the POAs, too.
“I’m a strong proponent of the power of attorney. I think it’s in everybody’s best interest,” says Jonathan Kinney, a shareholder at the Arlington law firm Bean, Kinney & Korman. He’s referring to both the principal (the person creating the POA) and the agent (the appointed decision-maker). The more clear-cut the wishes and roles are, the less room there is for missteps in carrying them out.
When it comes to choosing designated agents, trust is key. “Your choice of power of attorney is an important one,” Kinney says. “Obviously, if you have competent family members, they should be first,” but the principal may also appoint close friends, trusted coworkers or even an attorney.
It’s wise for the principal to have secondary (backup) agents in place in case the primary person can’t carry out their duties—for instance, if they’re out of the country on vacation when the principal has an emergency.
POA agents should feel comfortable with the job and its requirements, which may include heavy decisions such as when to end life support. “Have a discussion with the people who are your powers of attorney,” Kinney advises clients. “They’re going to have a better understanding of what you were trying to say and how to interpret it.”
Even after an older parent has put their wishes in writing, talking openly helps to remove ambiguity. For example, the advance directive may include a do not resuscitate (DNR) order, but a frank conversation can clarify what to do in different scenarios. What if there’s a slim chance of recovery? What if not everyone on the medical team is in agreement? “If you don’t have that discussion,” Kinney says, “how does the person know?”
A POA should spell out each agent’s name and exactly which actions they may take. For general or financial POAs, those actions may include making monetary gifts in the principal’s name, managing properties and overseeing financial affairs.
It should be noted that a medical POA is not the same as an advance directive. The advance directive indicates whether a person wants specific lifesaving procedures and medical interventions in an emergency, while the medical POA is a broader document that lets someone else make care decisions surrounding a variety of needs. With a medical POA, for example, the principal grants permission to someone else (an agent) to make decisions about life-prolonging treatment, hiring and firing of health care providers, and authorization for admission to hospice.
Experts advise making both types of POAs (medical and financial) durable, meaning they are effective from the moment the principal signs them and they don’t expire. (Although they can and should be updated periodically.) Nondurable POAs are effective only for a limited time, such as when someone is traveling, hospitalized or undergoing a medical procedure. A springing POA becomes effective after the principal is declared incapacitated, which only a judge can do after a court hearing.
Principals need not wait until retirement to get their affairs in order, Kinney stresses. It’s never too early to create a POA. “Anybody under 30 thinks they’re going to live forever,” he says, “[but] we’re doing them for people when they go to college.”
In fact, you can even create one yourself. Virginia has a free online durable POA form, as do commercial entities such as FreeWill, which says it takes 20 minutes to complete. Virginia does not require POAs to be notarized, but doing so is recommended because not all institutions, such as banks, will accept documents without that additional verification.
When making your own POA, note that “banks and other institutions may not accept a power of attorney that has not been prepared by a lawyer because it may not have the exact wording that is necessary,” according to the Virginia Poverty Law Center. Also, “if you had a power of attorney prepared while you were living in another state or country and you have now moved to Virginia, that document may or may not be legal under Virginia law. To be sure the document will be valid in Virginia, you should have an attorney review it for you or have a new one written,” the center states.
Do-it-yourself POAs are not ideal, Kinney says, but they’re better than nothing. Without a medical POA, treatment decisions can get complicated.
For those who have not documented their wishes in a POA, Virginia law requires doctors to seek a decision from the patient’s spouse. If the patient is not married, then the choice falls to a child or sibling. Absent family, “you’re going to wind up in court to have a guardian appointed…and you don’t make the decision, the court makes the decision,” Kinney says.
And yet, this due diligence is something many Americans avoid. One recent study conducted by the National Poll on Healthy Aging at University of Michigan found that 54% of older adults had not completed a medical durable power of attorney or advance care directive. Of those respondents, 62% said they “had not gotten around to it,” while 15% said they “did not know how,” and 13% said they “did not like talking about these things.” Another 13% said they “did not think it was necessary.”
Without these documents as road maps, the burden often falls on loved ones to guess what a person wants during their final days. With a POA, the instructions are clear, Kinney says. “That’s an important psychological thing for the person who’s making the decision.”
Living Arrangements
As a teen, I volunteered in a senior citizens’ home, and I remember my mom telling me that she never wanted to live in one. That passing comment stuck with me and resonated when it was no longer safe for her to continue living alone in Florida. I had no choice other than to take a deep breath, tell myself I had done all I could to meet her wishes and contact assisted living facilities near my house in Virginia.
Colleen Duewel, founder of LionHeart Eldercare & Consulting in Falls Church, says there are three ways to find the right life care or assisted living community for yourself or a loved one. You can hire a consultant, use a free service or do your own research.
Once you have a short list, the Northern Virginia Long-Term Care Ombudsman Program is a helpful resource for guidance on the quality of care in different senior living communities. More locally, you can gather information about senior living options from Arlington County’s Aging and Disability Services Division, the City of Falls Church’s Housing and Human Services department, and Fairfax County’s Department of Family Services.
Duewel recommends touring a potential senior community twice. On your first visit, assess the vibe. “Do people at the front desk and people who are cleaning rooms and everybody else look up and greet you? Do you see employees knowing the residents’ names—even if they are the cleaning person or the chef or somebody like that? Do people seem happy? Are they out of their rooms? Are they interacting? How does it feel?”
Then, go back and ask questions. “One of the questions I like is, ‘How do you help residents get comfortable and familiar in a new environment?’ ” Duewel says. “It’s a huge transition for people, and there’s a lot of effort often put into getting somebody there, but not as much effort orienting them to this incredibly new and different environment.” The answer you receive may be telling.
Cost will inevitably factor into each family’s decision. In Arlington and the greater D.C. area, the average cost of an assisted living facility is about $7,300 per month, according to Genworth, a Richmond-based company that provides long-term care financial solutions. That’s in addition to the downpayment or entry fee many places require for admission.
By comparison, the average cost of a home health aide (for six hours per day) is about $1,000 less—$6,300 per month—according to Genworth. But that doesn’t mean aging-in-place is always the best option.
“Most of the time people say, ‘I want to stay at home,’ ” Duewel observes. However, a setting that feels familiar and comforting can quickly become isolating once an elderly person is unable to drive or engage in activities outside of the home. Often “the caregivers…can’t provide a lot of cognitive stimulation,” she says. “It’s the same person, day in, day out, helping with everything. There’s not a lot of novelty. There’s not a lot of friendship.”
For extroverts in particular, a community environment that has activities such as art and wellness classes, continuing education seminars, social hours and day trips to cultural attractions might be better. “People need a purpose,” Duewel says. Without it, “I think that’s where you see the depression, that’s where you see loneliness.”
Financial Planning
My mom worked for several years as an assistant to an elder law attorney, where she saw many families navigate the financials of end-of-life care. And yet, she did little to prepare her own portfolio, other than putting my name on her accounts as a beneficiary and appointing me POA.
She didn’t have long-term care insurance, which can offset the expense of an assisted living facility or home health aide. As a result, all of her hard-earned savings went toward her care in a place she never wanted to live in.
On average, someone turning 65 today has a nearly 70% chance of eventually needing long-term care services. Women tend to need care for 3.7 years, compared with 2.2 years for men, according to the federal Administration for Community Living.
Planning for the expense of aging is “certainly something we talk about with almost every client,” says Andrew Sponaugle, senior wealth adviser and principal at Evermay Wealth Management, which has offices in Rosslyn. “Estate planning, insurance planning, tax planning—you name it.”
While estate planning covers the transfer of property and personal assets upon a person’s death, insurance—specifically long-term care insurance—and tax planning play a critical role while that person is still alive. Long-term care insurance kicks in and reimburses policyholders a daily preset amount to cover the costs of personal and custodial care (such as help with bathing, dressing, eating and mobility) whether at home or in a senior living facility.
In 2022, the average cost of a policy with $165,000 in benefits was $950 per year for a 55-year-old single man and about $1,500 a year for a single woman of the same age, according to the American Association for Long-Term Care Insurance. That’s enough to cover the estimated $164,250 annual cost of a private room at a nursing home in the DMV, per Genworth. What’s more, the benefits from a long-term policy are generally not taxable.
Traditional long-term care policies have no value after a policyholder dies—which is why hybrid policies are gaining popularity. A hybrid policy offers coverage for specific care services while a person is alive, as well as cash benefits (similar to those of a life insurance policy) upon their death.
Also gaining momentum are 1035 exchanges, an Internal Revenue Service code that allows for a tax-free full or partial transfer of one life insurance or long-term care policy for another.
Most people buy long-term care policies in their 40s and 50s, Sponaugle says. Some prefer to “self-insure” by planning to cover the costs associated with their twilight years with their own savings, investments and assets. “We’re not CPAs, but we are mindful of the tax ramifications of our suggestions,” he says. “In most cases that I’ve seen, long-term care costs are usually [tax-] deductible.”
Of course, with life expectancies growing ever longer, it is possible to run out of money. “That’s always in our mind, depending on the level of assets that clients have,” says Joni Alt, senior wealth adviser at Evermay. “I had a lady who—for the last, I believe it was four years of her life—it [cost] $30,000 a month to take care of her. That’s what she wanted, and she had the assets to be able to do that. But you could still run out of money. It’s never a fun thing when you get to that point.”
After paying about $10,000 a month for four years at an assisted living facility, my mom was close to broke. I had just moved her to a nursing home that accepted Medicaid 36 hours before she died at age 85.
I learned a lot during my eight years as a caregiver to my mother—although I gained most of the knowledge too late to make a difference in her end-of-life experience. Today, I’m at peace knowing that I did the best I could for my mom with the information and legal power I did have.
Most importantly, I made my decisions out of love, which I think is the most important starting place of all.
Stephanie Kanowitz is a digital editor at Arlington Magazine and a freelance journalist in Northern Virginia.
Know These Terms
Advance directive. A legal document that provides instructions for medical care that goes into effect if you cannot communicate your wishes yourself.
Agent. A person granted authority to act on behalf of the principal under a power of attorney (POA).
Assisted living. A senior residence that provides older adults with more support than independent living, but less than a nursing home or memory care unit.
Estate planning. A process of preparing for the transfer of property and other personal assets after death that usually involves professional counsel from lawyers, accountants, financial planners, life insurance advisers, bankers and/or brokers. Wills are the document most often associated with estate planning.
Financial power of attorney. A legal document that allows someone to make financial decisions on your behalf, such as paying bills, managing bank and investment accounts, and filing taxes.
Health care proxy. A person (also referred to as a representative, surrogate or agent) entrusted with making health care decisions for you if you can’t communicate them yourself because of a serious illness or injury.
Hospice. A type of care that focuses on comfort and quality of life for people with terminal illness and their families.
Long-term care insurance. Policies that reimburse policyholders a daily monetary amount to cover services associated with daily living, such as bathing, dressing and eating.
Medical power of attorney. A legal document that allows someone to make health care decisions on your behalf, such as medication administration, withdrawal from lifesaving measures and long-term care facility placement.
Palliative care. Specialized medical care to help people manage symptoms of serious, often chronic illnesses.
Power of attorney (POA). A legally binding document that allows you to appoint someone to manage your real estate, personal property, or medical or financial affairs for you.
Principal. The person creating and designating the power of attorney.
Will. Short for a last will and testament, a legal document that states how a person wishes to distribute their assets upon their death.
Sources: Administration for Community Living, American Bar Association, Consumer Financial Protection Bureau, Hospice Foundation of America, National Council on Aging, National Institute on Aging, Virginia Law Online Library
Helpful Resources
- Arlington County Aging and Disability Services Division
- City of Falls Church Dept. of Housing and Human Services
- The Conversation Project, Institute for Healthcare Improvement
- Fairfax County Department of Family Services
- FreeWill
- Genworth Cost of Care Calculator
- National Institute on Aging
- Northern Virginia Long-Term Care Ombudsman Program
- Virginia Advance Healthcare Directives Registry