What To Do When A Loved One Needs
Long Term Care
When you make long term care decisions, it helps to have a plan — and revisit it. Here’s how.
By David O’Leary
(13 min read)
My wife Lin’s mother, Barbara, never worried about herself. She had far more pressing concerns. How was the family feeling? Was anyone hungry? How about some homemade pasta?
The first time I met Barbara, I walked into her home to find a 4’9” tornado of an Italian chef circling the kitchen, rolling and hanging freshly cut linguine on the wooden dowel rails of a free-standing clothes drying rack.
Little Grammy, as our kids now call her, has always been a giver. She’s the most generous person I know and, in many ways, the center of our universe. A few years ago, something happened that disrupted the order of that universe.
Lin & her mom, Barbara
“That’s ridiculous,” said Lin. “We’ve always taken great care of that little car.”
After towing her Dodge Neon to the shop, further investigation revealed the problem. The radiator was missing, along with a good chunk of the transmission. Without noticing anything out of the ordinary, Little Grammy had mowed over quite the curb.
We fixed the Dodge, knowing it would never be parked in Barbara’s driveway again. Although giving up her car was an easy decision, it was a hard day. The most difficult part was figuring out what to do next.
Every day, somewhere in America, a family faces a moment like we did with Barbara’s Dodge. It can be a slow build or a surprise, but at some point it becomes clear that a loved one needs much more help managing their everyday life—like eating, bathing, getting dressed, or just getting around the house.
Help with what are known as “activities of daily living” can come in many different forms, depending on a person’s particular needs. But they all fall into one category: long term care.
Long term care can be very costly, even if it’s provided by a family member for what appears to be “free.” So it helps to plan for it in advance. But what if you didn’t plan? What do you do now?
The answer is the same: make a plan. Even if you’re late getting started. Even if it’s not going to be close to perfect.
When Barbara needed more help, we made a to-do list. Although we missed a few things, we got most of the important pieces in place. But looking back, I wish someone would have given us a checklist.
Surgeons use checklists before an operation. So do pilots before a flight. If something as simple as a checklist can help manage something as complex as conducting open heart surgery or keeping a plane in the air, I’m certain a long term care checklist can help a lot of families navigate the transition.
What’s more, I hope it can help caregivers take a moment to sit back, to close their eyes, and see through the eyes of the care receiver. Putting what brings meaning to their life at the center of attention makes it possible for the rest of the long term care plan to fall in place around it.
Every item on every checklist—whether it’s for a surgery or a flight—was put there as a result of hard experience. Our long term care checklist is no different.
It has four steps: determine Priorities, understand financial Liabilities, explore Aid options, and build a support Network. That spells PLAN. And if this PLAN can relieve even a small amount of stress for a family going through an experience like ours, then our stress will have been worth it.
P is for Priorities
Needing more care often means having less independence. It’s not easy to decide exactly when and how to take something as precious as independence away from someone you love. It helps to go into those decisions with an understanding of what is most important to everyone involved.
Right now, Lin’s goal for her mom is to make sure Barbara feels safe and comfortable but otherwise in charge of her daily experiences. But it’s important to note that priorities need to evolve over time.
Take the incident with her Dodge Neon. Back then, our priorities were different. Even after the accident, we still wanted Barbara to enjoy as much independence as possible.
In the decades after her husband, Kenny, had passed away, she drove her own car, managed her own social life, and lived in her own home. She told us the only way she’d ever leave her home would be, in her words, “feet first.” We worked hard to make that possible, for as long as possible.
In our give-and-take with Barbara about her priorities, mostly, we gave. But there were also times, like with her car, when we had to take.
A few years ago, after a particularly heavy storm, Lin got word from Barbara that rainwater had leaked through the foundation into the basement of her house. By the time Lin got there, her mom had already set up fans to start moving air around, helping it evaporate.
The fans weren’t the problem. It was the extension cord that snaked through puddles of water over to the electrical outlet. Lin photographed the scene on her phone and ran upstairs to confront her mom.
“Oh, I never thought of that,” Barbara said. She was the type who never locked her door, never worried about safety. Yet now, the thing she wasn’t worried about was mixing water and electricity.
“Mom,” Lin said. “It’s time to sell the house.”
Lin knew it was time because she had a good sense of the things her mom valued, even above living in her home. Like being there to spend time with her grandkids. Like not getting electrocuted.
If you ever find yourself struggling to figure out what to do next, first reflect on P — Priorities:
- Have a conversation to compare what they want most with what you want for them.
- Instead of jumping ahead to what care options are possible or what’s financially practical, start with the more intangible things. Try to understand values. What gives your loved one purpose and meaning? What do they feel is most important in their life?
- Establishing priorities has a way of helping to guide all manner of decisions, from where they’ll live to what kind of care you’ll provide.
This is an important conversation to have, and it’s useful to have it as early as possible. If you have the good fortune of time to plan ahead, take advantage of the opportunity to determine priorities regarding other important topics:
- Take the initiative to start an open-ended conversation with your loved one. Instead of trying to make decisions, seek common understanding about what matters most to everyone involved. Talk in person, allow plenty of time, and go with the flow of the conversation wherever it happens to lead you.
- Be the one to raise important questions about lifestyle and legal topics. What does daily life look like now, and what does your loved one expect it to look like in the future? Is there a will or living will, durable power of attorney, or health care power of attorney in place? Are those documents up to date and accessible?
- Write down goals and wishes that surface during the conversation. Inform everyone who might be affected. Suggest a follow-up conversation in the near future, and look for opportunities to keep the conversation going over time. Update the plan if the situation changes.
- The internet offers a wealth of information. I lead a division of Genworth, a company committed to helping families manage the financial challenges of aging. Among our many planning resources, you’ll find quick, easy-to-follow conversation guides — including dos and don’ts, who to talk to, and how to start the conversation.
L is for Liabilities (Financial Responsibilities)
In a dream world, finances aren’t a factor. But here in America, the things we need don’t come free. With freedom comes many responsibilities. In particular, financial responsibilities. Liabilities.
When Lin’s dad, Kenny, was succumbing to lung cancer in 1984, we made a promise. Lin and I were young newlyweds, all of 23 and 24 years old at the time, but we could tell there was something he needed to hear from us.
“You don’t have to worry about taking care of Barbara,” I told Kenny, the couple’s sole breadwinner, who had worked as an EMT, a police officer, and a GE appliance repairman. “We’ll take care of her.”
He looked me right in the eye. “I appreciate that,” he said, “and I thank you.”
Shortly thereafter, Kenny went into hospice and died. Lin lost her father, and we gained a dependent.
On the plus side, this particular dependent had a home, a car, and the ability to out-cook Marcella Hazan. On the minus side, Lin and I were still figuring out how to cobble together enough income to cover our own monthly rent.
For a time, our life revolved around three things: our family, our faith, and our finances. Lin and I were fortunate to develop careers that enabled us to provide for ourselves, our kids, and Little Grammy, even as Barbara’s long term care needs increased her financial needs.
As I’ve detailed elsewhere, it can be very expensive. A 2017 report by PwC¹ indicates that when a typical person needs long term care, the cost averages $172,000. Could be less. Could be more. Given that 70 percent of people over 65² will need some kind of long term care at some point, it’s important to have a plan for a long term care expense.
When we sat down to make Barbara’s long term care plan, we knew we wouldn’t be getting help from health insurance or Medicare (the government program for the elderly). Those cover long term care only in limited circumstances, like in the transition home from a hospital stay.
“Mom is one thing,” Lin said. “What’s our long term care plan?” Good question
When you make a plan, understanding the financial responsibilities is step two: L—Liabilities.
- When you have the conversation about long term care planning, raise the important questions about finances. How are bills currently being paid? Is insurance an option? If not, is there income that can be redirected for care, if need be?
- When it comes down to it, there are four ways to manage long term care liabilities: out of your own pocket or nest egg, through long term care insurance, through Medicaid (joint federal and state program that helps pay health care costs if you have limited income and resources and meet other requirements), or by providing care yourself in place of hiring help. In many cases, it’s a combination approach.
- Each option has its pros and cons. If you spend down your retirement assets, that nest egg isn’t available for other activities, or to pass on to future generations. To use long term care insurance, you have to purchase a policy long before you need it. To use Medicaid, you have to spend down your assets before you can qualify. And unpaid care has costs of its own — many caregivers often take time away from work, sacrifice their own health and well-being, and spend thousands of dollars of their own money to provide care.
- In addition to consulting online resources, consider consulting an expert, if you need help. Each state has its own laws and regulations, particularly around state-run Medicaid programs. A financial advisor or an elder law attorney can help you explore options you might not have considered — including ways to protect the assets your loved one does have, so they can enjoy and pass down the wealth they’ve spent a lifetime building up.
A is for Aid (Care Options)
Barbara had spent her life caring for and doting on others. In the time after the car accident and before she sold her house, it was supposed to be time for others to start to take care of her. But she had other ideas.
Lin and I had hired help to visit Barbara in her home: a nurse to check up on her periodically and a homemaker service to take care of the things she couldn’t — like lift loads of laundry, push the vacuum around, and drive her to her appointments.
But at the same time, Barbara kept on doing the things she loved to do most: cooking for her “guests” and chatting the day away. After pretty much every visit, Barbara’s helpers went home with food to share.
Fast forward to today. Barbara has a new lifestyle in assisted living. At first, she thought it would be tough to give up the kitchen. But it turns out, she loves it.
“They cook her meals, clean her dishes, make her bed. Everybody’s waiting on her.” Lin laughs about it all the time. “She’s become a little diva.”
Along with priorities, care needs evolve over time. That makes step three, A — Aid, an important one to regularly revisit.
- When you first have the long term care conversation, ask questions about care options. How and where would your loved one prefer to receive care? Over time, figure out more specific details, like who their preferred care provider might be.
- The care option — or the combination of options — you choose will depend on how much support your loved one needs, so it helps to get to know the possibilities in advance.
- Although most people want to receive long term care in their home, that option isn’t always best, depending on the need.
- There are many different types of long term care services, at different price points. They include homemaker services, home health aides, adult day care, assisted living, nursing home care, and informal care provided by a friend or family member. For more on each, Genworth provides a brief breakdown on types of care settings in the article, “What is Long Term Care?”
N is for Network (Your Support Network)
The relationships people enjoy as caregivers can be deep, enriching, and purposeful. But if we’re being honest, we must also acknowledge giving care can take a financial and emotional toll.
Barbara has good days and not-so-good days. Which means Lin has good days and not-so-good days.
Take the tale of two quilts. Two of our nephews had weddings coming up. Knowing Barbara is a big quilter gave us an idea for the gifts she could give: festive skirts to wrap around the base of the Christmas tree. In addition to a place to put presents, it would be an heirloom they could pass down. All we needed to do was get Little Grammy a pair of step-by-step kits and voilá! (Or I should say the Italian, ecco!)
The first skirt Barbara made was absolutely perfect. Six weeks passed before she started on the next one. In that short time, she lost just enough of her ability to follow the logic of the instructions. Lin ended up being the one to rip out the seams, so her mom could have another try. The third time was, indeed, the charm. In fact, she’s working on the next one as I write this.
“Recently, Lin joined an online group that exists for friends and family members like her to share the experience of caring for a loved one who lives with dementia. The other night, a caregiver was expressing frustration about the setbacks they had experienced that day. For one, the effort had left them exhausted. But also, they were depleted in another way — feeling the loss of the parent they had always known.
Who will care for the caregivers? It’s not a coincidence that many of them are like Barbara: endlessly generous with their time and energy. Lin, too, inherited this virtue from her mom.
I’m sure you know a giver like them. Maybe you are one yourself. If so, I’m willing to bet that turning to others for help is something you’re actually inclined to put off. You’d never want to put anyone out or cause anyone any trouble. But please, let me stop you right there. You’ve earned, deserve, and have more to gain than anyone from receiving a little attention yourself — especially when you notice yourself starting to feel burned out. Don’t be afraid to ask for help.
This is step four, N — Network, referring to the web of care you spin outward — from the care recipient at the center, to the primary and secondary caregivers, to the family and community. Your support network could provide help in a lot of different ways, depending on what gives you a sense of purpose.
- Maybe it’s something significant, like turning to social resources for help with expenses or hiring help for a few hours a week, so you can take time for yourself to relax and recharge.
- Maybe it’s something small, like setting aside a few minutes on a regular basis to write down one thing you’re grateful for — or a good excuse to get that massage or take that yoga class.
- Maybe it means joining an actual support group. In its suggestions about how to find a caregiver support group and what to expect, Genworth walks through some of the many benefits, including to “lower your stress and give you the opportunity to learn from others.”
Lin has certainly found that to be true. The online group she joined is much more than an assurance that there are many others facing similar challenges. When the way ahead feels unclear, it helps to hear from those around you who have down the path before.
In Lin’s first-ever contribution to the group conversation, she responded to the caregiver who was feeling the loss of their parent. “Make new memories,” Lin wrote. “Don’t worry about these old memories that he might not be able to remember. Make another happy memory, so you have something new to share.”
By the time she woke up the next morning, three people had followed up, offering encouraging words of their own. Lin saw that, as much as a disease like dementia takes from people and the people who care for them, in a small but meaningful way, she had found a way to give something back.
That’s what I hope to do with this checklist — Priorities, Liabilities, Aid, and Network — four steps that I believe can help you get from not knowing what to do, to having a PLAN you can act on.
When it comes down to it, having a plan can make it possible to protect priorities. As Atul Gwande wrote in his wonderful book Being Mortal,³ “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.”
That’s really what long term care is. It’s not medical care. It’s the pasta cooked, the quilts sewn, the laughs shared over a cup of coffee. Long term care is a means to enable well-being — a means to enjoy the best parts of our lives, in whatever form that takes right now.
I hope our experiences — and these thoughts — are a help to you.
President and Chief Executive Officer, Genworth, U.S. Life Insurance
Next Steps: Plan for Long Term Care
- “Formal cost of long-term care services”, PwC. https://www.pwc.com/us/en/insurance/assets/pwc-insurance-cost- of-long-term-care.pdf. 2017
- 2019 U.S. Department of Health and Human Services https://longtermcare.acl.gov/the-basics/how- much-care-will-you-need.html, 10/10/2017. Site accessed 10/28/2019.
- “Being Mortal: Medicine and What Matters in the End”, Atul Gawande.https://www.goodreads.com/work/quotes/40015533-being-mortal-medicine-and-what-matters-in-the- end