I sold my mom’s house in Florida in December. I didn’t discuss it with her, which is weird because we discuss everything. Or we used to, before her Alzheimer’s disease worsened. I’ve learned to edit myself in conversations and to consider what is worth stressing her out (if she remembers what I’ve said).
It’s all part of the guessing game I have been playing since 2012, when, at age 77, she became one of the 5.4 million Americans diagnosed with the cognitive disorder, according to the Alzheimer’s Association. She refused to discuss it with me, insisting that her forgetfulness was just part of the normal aging process. She remained in denial, even when she was ordering pizza every other night because she couldn’t remember to grocery shop, or when her Medicare coverage lapsed because she forgot to renew it.
Luckily, she had done one thing to prepare for her later years: She had signed a durable power of attorney empowering me to make care and financial decisions for her when she no longer could. I’m an only child, and my dad died in 1992, so I became her caregiver, armed with a POA and lots of educated guesses.
I knew my mom had no intention of leaving the townhouse she had inhabited for 38 years. Keeping her there safely meant I had to hire a housekeeper and a home health aide — help she accepted only grudgingly.
I was a joint account holder on all her assets, but she refused to tell me what those assets were. To get control of them, my husband and I sneaked over to her house during our visits to our parents in Florida from our home in Fairfax. While she was at my in-laws’ home nearby, seeing our kids, we’d search her files. It felt awful, but it allowed us to keep her lights on.
When a stroke and bilateral pulmonary embolism last June left her in a wheelchair and confused (not just forgetful), there was nothing to discuss. Her time at home was over. I moved her into an assisted-living facility minutes from where I live with my husband and our two children.
For the most part, I don’t regret my choices. I’ve done my best. But this situation was avoidable. An end-of-life planning conversation is difficult, but not impossible, even with the most stubborn loved one. I spoke with several experts on aging and end-of-life planning on how to broach the subject and what to cover. Here are their suggestions.
“There’s no hard-and-fast one-size-fits-all as to how to do this,” said Sally Hurme, author of “Checklist for My Family: A Guide to My History, Financial Plans and Final Wishes,” published by AARP and the American Bar Association.
But there are some tactics that can make the conversation easier, Hurme said:
• Ask one or two questions at a time. For instance, ask where the person banks, then wait a week before asking where to find their Social Security number.
• Use someone the person knows as an example of what you want to do or avoid. Discuss how things worked out and ask what your loved one would do differently.
• Invite a trusted third party, such as a faith leader or lawyer, to act as a mediator to clarify everyone’s goals.
“Use the approach that ‘I want to be sure you maintain your independence as long as possible. I want to be sure that your wishes are carried out, whether it be financial, where you live, how you live, the quality of your life,’ ” Hurme said.
I didn’t start this conversation with my mom until after her diagnosis. I was 34 and more focused on my then-2-year-old and newborn than I was on what I’d do if my mom got sick. I also assumed that because she had set up the POA, she wouldn’t be averse to discussing other details. On all counts, I was wrong.
It’s never too early to start the conversation, but it can become too late, Hurme said. Once someone has been diagnosed with cognitive impairment, they can no longer sign a POA.
“The time frame is today,” Hurme said. The conversation should be revisited periodically, particularly when circumstances change, she added.
Cover the most important topics first — namely, who can make financial and medical decisions for your loved one.
“I tell my clients there are three important documents they should have,” said Morris Klein, a Bethesda-based lawyer who works in elder law. Those include a will, a financial power of attorney and a health-care power of attorney.
Simply writing down the names of whom you want to be your beneficiaries and who should make sure those wishes are carried out might not be enough, Klein said. A will must be signed in front of witnesses and fulfill other legal requirements to have maximum leverage in court. But you don’t have to pay hefty legal fees to draw one up. It’s possible to use online software to generate a simple will.
A financial power of attorney authorizes someone to handle money decisions. It can be specific to a life event, such as selling a home, or more general and cover all financial matters.
Be aware, though, that third parties (such as banks) are not legally required to honor a financial power of attorney. They are more likely to do so if the document is detailed, including specifics on property transactions, business operations, trusts and bank transactions, Klein said. Additionally, unlike health-care decision-making, there is no default authority given to a spouse or child, making it imperative to be specific here.
A health-care power of attorney names someone to make medical and care decisions and may include a do-not-resuscitate order.
If no one is specified in this document, a spouse gets priority, followed by children.
Without a power of attorney, an incapacitated person is subject to a guardianship — someone to be responsible for their care — which is often more expensive and time-consuming, Klein said. The cost of having these legal documents drawn up by a lawyer runs from a couple hundred to several thousand dollars.
The average cost of an assisted-living facility in the District is about $6,700 per month, while a nursing home can cost about $10,000 per month, according to the Genworth 2016 Cost of Care Survey. Prefer to keep your parents at home? That’s not cheap, either. You may need to renovate the space to accommodate a wheelchair, for example, and home health aides typically charge about $20 per hour.
One of my biggest regrets is that my mom didn’t have long-term-care insurance, which covers policyholders up to a certain amount per day for personal care services such as bathing and eating. That might have been the missing link to fulfilling her wish to stay in her townhouse.
Some policies, however, expire after a couple of years, and they might not reimburse for all costs. For instance, insurance may cover building a wheelchair ramp to get into your home, but not the cost of an assisted-living facility, said Jessica Ness, a senior financial planner at CJM Wealth Advisers in Fairfax. Additionally, policyholders might have to meet a deductible before coverage starts. A person’s ability to independently perform the six “Activities of Daily Living” — bathing, continence, dressing, eating, toileting and walking — is a common gauge for when long-term-care insurance kicks in, Ness said.
People with long-term-care insurance should have $30,000 to $60,000 on hand to cover the deductible, Ness said. For those who don’t have it, she uses Genworth’s survey and Fidelity’s retiree health-care cost estimate to estimate savings needs. The latter recommended last year that a married couple over age 65 have $260,000 saved for health-care costs.
Another option is to give assets away. If you’d rather your money go to aid a family member or friend instead of to health-care costs, you need to start gifting early to avoid penalties when applying for Medicaid. The service penalizes any gifts made within five years of your application.
Where to live
Choosing an assisted-living facility was the hardest decision I made for my mom because I knew she didn’t want to live in one. I focused on location, cost and care options so that I wouldn’t have to move her more than once.
Many people lump assisted living and nursing homes into one category, but they’re different animals. Assisted-living facilities are regulated by the county where they’re situated, and most have an on-site nurse only during typical business hours. That limits the types of services they can provide. Nursing homes are regulated by the state and staffed with a licensed nurse at all times.
“It’s really important to go out and look and see what’s available before you make any big decisions,” said Megan Descutner, owner of Golden Pond ElderCare Strategies.
Things to consider include cost, location and your loved one’s interests, said Descutner, who charges $150 an hour plus travel fees to help families find and maintain care. An active senior needs a community with lots of activities and a social population, although more sedentary people can usually find a private space even in the most bustling places. Someone with more advanced health issues might opt for an assisted living facility with a nurse on site 24 hours a day.
Regardless of planning, a move will be stressful. I was told it could take three to six months for my mom to acclimate to her new surroundings, but the time frame depends on the person, said Nancy Reburn, manager of the memory-care and assisted-living houses at Charles E. Smith Life Communities in Rockville.
Reburn recommends talking with your loved one about what they’d like to take with them. Familiar furniture and decorations can be comforting.
I couldn’t fit my mom’s favorite recliner into her tiny bedroom, but I covered her walls in photos of people she loves. Six months into assisted living, my mom still gets mad at me for leaving when our daily visits end. But sometimes she thanks me for being there for her. And I know she means more than visiting.