Sometimes death comes like a thief in the night. Other times, there’s a slow and clear buildup. In the latter scenario, one of the benefits – if you can even call it that – is that you have time to prepare for the end of your life.
At some point, it may become clear that whatever healthcare, treatments, medication, or procedures you’re pursuing to prolong your life are no longer effective. You may also come to realize that they’re doing more harm than good – robbing you of the opportunity to enjoy what time is left. When these revelations become clear, the best thing you can do is stop and focus on your quality of life.
As sobering as it is to accept, you will eventually pass on. And either you pass on without any purpose or plan – leaving the burden to your loved ones – or you can take the time to prepare for the end of your life and, in the process, provide a greater sense of closure for everyone involved.
Everyone’s end of life care situation will be different, but here are some suggestions to help you approach this sensitive and emotional time with poise:
1. Have Important Conversations
The first step is to have the right conversations with the right people. When you decide to stop seeking treatment or pursuing certain healthcare options that are designed to extend your life, it’s important that people know.
Your family needs to know that you’re dying – not so that they can feel sorry for you, but so that they may process it in a healthy manner. These conversations are more for your loved ones than they are for you. Set aside some time to speak with parents, siblings, grandchildren, close friends, mentors, etc. You don’t have to be overly sentimental or wise – just be yourself. Honesty will go a long way.
2. Make Your Wishes Known
Now’s the time to make your wishes known. If you’re currently in a nursing home, hospital, or another care facility, it may be wise to move back home. This will lessen your chances of receiving poor care from a staff that may neglect certain important needs. Instead, you can receive personalized care from your loved ones (who are more likely to respect your wishes).
If you haven’t already done so, now’s also a good time to designate a trusted loved one to make medical decisions on your behalf.
“This person, called your healthcare proxy or medical power-of-attorney, is the person who you know will make decisions the way you want them made and who can most easily stand at your bedside, if necessary,” patient advocate Trisha Torrey writes. “Your proxy will need to make decisions for you if you are in a coma, have a sudden heart attack or stroke, experience another debilitating event, and can’t speak. In addition to your primary representative, you’ll want to designate who your second choice representative should be.”
If there are specific details that are important to you, make these clear as well. For example, some people only want certain individuals present when the time comes for them to die. Other people don’t care. Speak your mind now so that you have the chance to die on your terms.
3. Get Financial Matters in Order
Hopefully you already have a last will and testament drafted. If you don’t, go ahead and do so. This will allow you to direct your finances and assets to the right people. It also saves your heirs from having to deal with the legal fallout of an estate that hasn’t been properly accounted for.
4. Secure the Right Burial Arrangements
Finally, be sure that you establish and document your burial arrangements prior to your passing. This is one less thing your family has to worry about. It gives them the opportunity to grieve properly, rather than hurrying around to figure out administrative details.
Leaving With Grace and Dignity
You will leave a legacy when you die. Whether this legacy is positive or negative remains to be seen. By preparing for the end of your life with purpose and dignity, you’ll increase the chances of passing on a legacy that people are happy to attach themselves to. Take some time to think about your wishes and how they can be executed tastefully.
These days, your last will and testament needs to cover more than just who gets your money and random tchotchkes. Cake takes a no-nonsense and pleasant approach to planning your inevitable demise; no gloom and doom here. Founder Suelin Chen explains.
A few years ago, ahead of a scheduled operation, I had to hire an attorney to draw up my last will and testament. Per the hospital’s instructions, I was also told to bring a copy of my Advance Directive, or instructions on when to pull the plug. It was scary, grown-up stuff.
As a digital native, it all felt a bit too real. I would have much preferred to sit on my couch, laptop at the ready, with an on-screen AI to talk me through the whole decision-making process and pop it up on the cloud. And that’s exactly what former healthcare executive Suelin Chen built in her Boston-based startup, Cake.
Aware that no one is thrilled about planning for the final exit—or having to talk loved ones through their own wishes—Cake is a no-nonsense online tool. You can lay out: how you’d like to go (hospice versus at home or maybe a remote cabin in the woods); who gets your stuff; the music you’d like at your memorial; and more.
You can also specify how you want to be remembered digitally. Perhaps you want to allocate funds for annual site management fees, domain registration, or deputizing someone to ensure a Wiki-profile is factually accurate.
I spoke to Chen to find out more. Here are edited and condensed excerpts from our conversation.
Suelin, how did you come up for the idea behind Cake?
With my background in healthcare and business, I saw not only the high costs involved in end-of-life care, but that in our country people often default to enduring more and more medical procedures without fully understanding the value, or the trade-offs. Three out of four people don’t plan for end-of-life, and I get why—the barriers to planning can be really high. Simply put, I saw an opportunity to help people plan better, to make their desires known, before it’s too late.
Because they’re too incapacitated to make their views known?
Right, it’s often brought up too late. Because, when surveyed, 80 percent of people would prefer to die at home—and yet, today, 80 percent of people die in medical facilities.
Planning for the final exit is a space ripe for disruption, then.
I knew there could be good digital tools for doing this but I couldn’t find any, so I found a great team and built Cake.
Is there also a generational shift? Due to social media, we get to ‘see’ people die, many of whom we might have lost touch with over the years. Death is going to happen to us all. But it feels more ‘visible’ now.
Absolutely. We have a lot of millennials on our platform, and we see that this generation is very pragmatic and perceives less stigma about death than older generations. Previous generations have been remembered through a gravestone or something similar. In time, those degrade. But our digital footprint, the traces of our lives, will persist online. I ask people, when your great-grandchildren search online for you in the future, what do you want them to find?
That’s a deeply unsettling and yet curiously interesting thought. You must have worked with many different partners to bring Cake to life.
Yes, we’ve spent hundreds of hours consulting with experts to develop all our online tools including: estate attorneys, funeral planners, physicians, social workers, and wealth managers.
How does Cake work? This is more than a basic will, right?
Yes, many of our users have done estate planning and have a will but realize that they still have gaps. We provide a personalized, comprehensive, and detailed checklist that helps people understand what planning they still need to do. It’s hard to know what legal fees are reasonable, because there’s a lack of transparency. Many of our users have seen an attorney but want more visibility into the process. It’s not just avoiding taxes on your assets after death (though of course this is very important). It’s also managing how you want to be remembered, your funeral or memorial service, your digital footprint, your digital assets (Bitcoin, etc.)—certainly doing more than putting all your passwords in an Excel doc and locking it (which has been recommended to several of our users).
How many data points is your AI gathering as it takes a Cake user through personal planning?
It’s fluid [and] really depends on the individual. Our Cake AI prompts you with questions, to capture data around many decisions that need to be made. But there’s also a freeform section for more personal wishes. Some of our users write (almost) novel-length answers to those.
What are some of the more ‘out there’ requests?
Well, every employee at Cake has gone through the process and one of my team members loves the idea of having a tree planted for him. A lot of our users, including me, feel they’d rather have a celebration of life than a somber funeral. One of our users wants to be buried with a 6-pack of Bud Lite. Someone else I know has left instructions to rent out a movie theater for his. Your last wishes should be a true expression of who you are.
How many people have signed up so far?
We don’t reveal exact user numbers.
Fair enough. It’s free to users, so what’s your revenue model?
We make money from affiliate links and from enterprise partners who distribute to their population. For example, we’ve built a Cake back-end for a large healthcare provider, an insurer, a bank, and other institutions. A premium product is also in the works.
You don’t share data with ‘interested parties’ who might want to sell fancy urns then?
No, trust is the most important thing to us. We will never sell or share personally identifiable information with any third party without our users consent.
Why the name Cake?
It’s a warm, inviting symbol of celebrating and honoring life. Planning is a positive act, a true gift to your loved ones.
You’ve build a web-based service, rather than a mobile app. Why?
It’s much faster to iterate and improve the platform, and doesn’t require any download. We also know that many of our user base is more comfortable with web apps than downloading native applications.
Do you have a tech team in-house or are you partnering with a digital agency on this build?
All in house! We actually have more female than male techies, who span several generations, which I’m very proud of.
Are you wedded to any particular tech tools?
Choosing Microsoft Azure as our hosting platform made it easy for us to implement excellent security and scalability for our product early on, and our code base heavily utilizes the Microsoft .NET stack as well. We recently also switched our internal IT to Office 365 and were early adopters of Microsoft Teams; so I guess we’re fans of Microsoft technologies.
Why are you based in Boston rather than any of the other Silicon cities?
I love Boston. There’s a lot of activity in FinTech, MedTech, and healthcare here. It’s a great place to be, with plenty of talent and financial support from big institutions.
Finally, what’s next for you?
We have an exciting growth plan for 2019, and a number of new partners in the financial sector that will provide new avenues for growth and new opportunities to add features that enable our users to plan and have peace of mind. Cake is in the FinTech cohort of Mass Challenge 2019, which kicks off orientation on Jan. 18. The initiative is aimed at startups which have an enterprise-ready solution, and helps them partner with large organizations. Cake will be working with MassMutual, Fidelity, and AARP Innovation Labs.
Bobbi and Daniel Manka were settling into bed after a night out dancing when Daniel stood up, clutched his chest and gasped, “911.”
Just like that, Bobbi Manka lost her husband of 44 years and gained “a hole in my heart that will never be replaced.”
But she has found comfort where she didn’t know she would: at work.
Grief after the death of a loved one inevitably follows people to work, where employers and co-workers often are unprepared to handle the immediate sorrow or the surges of pain that ambush mourners at milestones like birthdays and holidays.
Some of the shortcomings can be linked to insufficient bereavement leave policies, but often what fails is the human response to a suffering colleague.
“We have become an increasingly death-denying society,” said Amy Florian, CEO of Corgenius, a Hoffman Estates-based organization that trains businesses on how to help grieving clients and employees. “And when we don’t talk about it, we don’t know how to do it well: how to accompany people through grief.”
Florian said employers would be wise to prepare for the impact of grief on business as aging baby boomers, who are staying in the workplace longer, move toward the end of life.
“We are in for a death boom, we are in for a dementia boom,” said Florian, a fellow in thanatology, the study of death and bereavement. “All of these things are going to happen but firms are not prepared for it.”
Being prepared includes understanding that grieving individuals will cope differently, and employers should accommodate their unique needs, Florian said.
Nearly 90 percent of employers say they offer paid bereavement leave — usually three days for an immediate family member — but that’s not nearly enough time for many people, especially when the death is sudden, she said. Employers might want to consider more generous policies as well as expand them to accommodate deaths beyond immediate family, as losing an aunt or friend can be just as devastating if the relationship was close, Florian said.
No federal law requires employers to give workers time off to grieve, though Illinois has a law, which went into effect two years ago, that provides up to 10 working days of unpaid leave for the death of a child at companies with at least 50 employees.
Florian said employers also should not expect grief-stricken employees to function normally when they return to work, as their concentration is shot, their minds are disorganized and they may be prone to making mistakes. Some employees will need additional support for a month or two once they’re back on the job, such as flexible work schedules, more breaks, adjusted expectations and someone to catch errors, with the assurance that their performance reviews won’t suffer, she said.
Educating co-workers on how to best support a grieving colleague can also help. Many people fumble awkwardly as they try to express sympathy, or avoid the topic altogether because they don’t know what to say, Florian said.
“What is often very shocking for people to learn is that ‘I am so sorry’ is not the best thing to say when someone dies,” Florian said. “The focus is all wrong, it’s on the comforter and not the griever.” Better to ask about the person who died — what they were like, how it happened, making sure to use his or her name, she said. If someone doesn’t want to talk about it, they will close the door on the conversation, she said.
Manka, 64, who lives in Genoa, a town about 65 miles northwest of Chicago, said she was surprised to discover how often people didn’t ask how she was doing after her husband died suddenly of a massive heart attack two years ago.
“They are afraid that they might trigger something and you might start crying,” she said. “Even if I did, it would have been a good thing.”
But Manka, an administrative assistant in the Tyson Foods sales office in Elgin, was pleasantly surprised at how her colleagues stepped up during her crisis, even though she’d worked at the company only two years at the time and no one from the office had met her husband — the kind of guy “who would take his shirt off and give it to anyone,” she said.
Her boss and a colleague not only attended his “celebration of life” but stayed through the event and got to know her family, she said. When her three days of bereavement leave were up and she couldn’t bring herself to return to work, she was given an extra week off unpaid. She was eager to return when she did.
“My world had been rocked so incredibly hard that coming back to work helped me, because the house was so empty,” Manka said. “Work was my safe place for a long time.”
As she struggled to adjust to her new reality, Manka sought counseling from Tyson’s chaplaincy program, a network of 100 chaplains employed by the company to help Tyson workers navigate life challenges. She found solace in the Bible verses she was given and the advice about how to help her children through their grief as she dealt with her own.
Small kindnesses in her office of 12 have made a big difference, she said. On Manka’s first birthday after her husband’s death, her co-workers presented her with a big cake and card, and told her “we want you to know you’re part of the family,” Manka said. On her wedding anniversary, or when anything happens that triggers memories, her boss can detect a shift in her mood and urges her to take a walk and clear her head.
Such accommodations pay off in the long term, Florian said.
“People who felt they were treated compassionately during times of grief are incredibly loyal to their employer,” she said.
Grief last year cost employers an estimated $113.27 billion in reduced productivity and on-the-job errors, a calculation that takes into account not only the deaths of loved ones but also other traumatic losses such as divorce or home foreclosures, according to the Grief Recovery Institute, an organization based in Bend, Ore., that trains therapists and counselors in grief recovery.
That estimate is up from $75 billion the last time the nonprofit released its Grief Index in 2002, a increase driven by inflation as well as changing workforce demographics as the population ages, said Operations Manager Ed Owens.
Yet employers are rarely proactive about addressing grief in the workplace, and typically only seek help when an employee has died and co-workers need support, said David Fireman, executive director of the Center for Grief Recovery and Therapeutic Services in Chicago’s Rogers Park neighborhood.
“If I had my druthers, (grief training) would be a built-in component to employee orientation,” Fireman said.
While the aging population is one source of workplace grief, another is the city’s violence. Fireman’s organization last year counseled students and faculty at the Chicago Waldorf School after a teacher at the school was killed by a stray bullet while she waited at a nearby Red Line station. He continues to be available to them because “grief is a process and there might be delayed reactions,” he said.
GrieveWell, a nonprofit in Ann Arbor, Mich., that provides grief training to employers and peer-to-peer support for grieving adults, is trying to raise the profile of grief as an “unspoken public health issue” with dangerous consequences if it is not addressed, said Amy Milanovich, former executive director.
Unresolved grief, a clinical term that refers to intense mourning that persists for a long time and interferes with daily functioning, has been linked to an increase in heart disease, stroke and cancer, she said.
The workplace has become increasingly important as a source of support as community traditions that used to surround people in mourning have been cut short amid a social expectation to get back to life as usual, she said.
“Everyone around is someone who could be in grief and everyone needs to be someone who can support them,” Milanovich said. In addition to conducting business lunch-and-learns on the topic, GrieveWell offers a deeper training in active listening for employees who want to be the designated ear colleagues turn to in time of need.
ComPsych, a Chicago-based provider of employee assistance programs, has seen a steady increase in crisis counseling calls about bereavement, likely because employers have become more aware of the need for mental health support, spokeswoman Jennifer Hudson said. Employees over 60 are the most likely of all age groups to seek bereavement help, the company’s data show.
Eric Freckman, a certified financial planner in Palatine, said grief training at his firm has led to improved relationships with clients, who often find themselves navigating unfamiliar bank accounts and investments when a spouse or parent passes away. Increasingly, grief strikes even before death as more people live longer with diminished capacity, he said.
People tend to make emotional decisions around money, especially when they’re grieving, so it takes empathy to guide them to the best decision, Freckman said.
“There’s the answer in Excel of what they should do,” he said. “But getting people to actually do that is very difficult.”
Freckman said he used to be “sort of terrified” of talking with clients about their loved one’s death, and would avoid it by sticking to discussing numbers. But after training with Florian at Corgenius he feels comfortable engaging in conversations about the loss — “How did you find out?” he asks. “What was it like for you?” “Are there phone calls we can make for you?” — and leaving the paperwork to later meetings. Ninety percent of clients want to talk, and the care shown has helped solidify trust, he said.
“We keep track of people’s birthdays, we try to call and let them know we’re thinking about them, that we know it’s a hard day, the first Christmas alone,” he said. “It’s all relatively simple stuff when you think about it.”
The simple stuff can make a big difference, Florian said. She knows from experience.
Florian was 25 and a new mom to a 7-month-old boy when her husband, John, went to a business meeting and never returned. A farm insurance agent, he was killed when his car was struck broadside on a rural Iowa road on a sleety February night.
“I felt like my future had simply evaporated in an instant,” Florian said. “And nobody knew what to say to me.”
Florian, a stay-at-home mom at the time, felt “every breath was different” after that day, as she adjusted to the empty pillow, the coffee for one, the realization that “anyone could die at any time.”
She felt alone as many people avoided talking about her husband after the funeral. She was grateful to those who did, especially when they said his name.
“It’s such a comfort to know that John’s life made a difference, that someone remembers besides me,” she said. “That his death left a void in the world, not just my life.”
Florian noticed the various ways well-meaning people’s support was insufficient. They’d ask if she needed anything, but she felt bad taking advantage of those offers, worried she’d be a burden. More helpful, she said, was when people identified what needed doing and offered to do it, such as shopping for groceries, weeding the garden or babysitting her son.
Florian recalls working with a financial professional who would change the subject when she started to tear up. So she was impressed when another financial planner, on their first meeting, looked at her file and said: “I see that you are widowed. Tell me about John.”
Her experience propelled her to get a graduate degree in pastoral studies and advanced certification in grief counseling, and she taught ministry courses on death and grieving at Loyola University for 11 years.
Decades after John’s death, Florian is remarried, and her sadness lives alongside her joy. She can still be sent into a sobbing fit in the grocery store aisle when she hears a certain song – and that’s OK.
“The point of healing is not to forget,” she said. “The point is to remember.”
If you are over 50 and reading this, you have probably done some end-of-life planning. No? Time to get to work. You made a will 15 years ago? Not good enough. If you haven’t done anything or haven’t reviewed your planning in over five years, read on.
The key components of end-of-life planning are:
A power-of-attorney for finances
A power-of-attorney for health care
An advance directive for health care
A trust for your assets
I am not an attorney, so I am not going to go into any depth about these legal documents. My intention is to rouse your interest in doing end-of-life planning by telling you about some novel and inventive ways to enhance it. So, even if you have done the basic planning with your estate attorney and have the documents on record, there are some new and interesting twists today that you may want to know about.
Traditionally, when the topic of end-of life planning comes up, the first item that comes to mind for most people is a will. If you are just beginning this journey a will is a good place to start and you may not need an estate planning attorney to take this first step. There are a number of online tools today for building a will, and some of them are so robust you may only need a couple of witnesses rather than an attorney.
FreeWill.com is one of the newest players in this space. Founded at Stanford University and launched in 2017, FreeWill (in the company’s description) “provides high-quality, intuitive online estate planning tools at no cost to the consumer.” The founders, Patrick Schmitt and Jenny Xia, are young entrepreneurs with experience in finance and technology.
Several years ago, Patrick, who has a background in nonprofit fundraising and technology for social impact, was about to travel to areas that were not particularly safe for Americans. He decided the prudent thing would be to make a will. In doing so, he discovered that the process was more complicated and difficult than it needed to be, especially if one wanted to include any kind of planned giving to a non-profit. That event became the impetus for starting his company, FreeWill.com.
FreeWill strongly supports the inclusion of planned giving and it is built in to their will-creation software. Through their own research, they have discovered that single people are more than twice as generous as any other group when writing a will and single people who choose to leave a bequest are the most generous (2.5 times more than married people). FreeWill reaches out to singles through their marketing and because I often write about solo agers they reached out to me to help them spread the word.
I tried the online will creation form and discovered it to be very simple and straightforward. It took me less than the 20 minutes they suggest. Once I had completed the online form, I had the option to print it. Printing is necessary because for a will to be legally binding it must be signed by the principal and also by two witnesses. Then it can be kept stored in a safe place, including cloud storage. For larger, more complex estates, FreeWill suggests pairing the effort with a visit to an attorney and they provide the forms for doing just that. FreeWill will be rolling out additional end-of-life forms. A health care directive and a durable power-of-attorney are in the works.
An often-overlooked piece of end-of-life planning is the disposition of your remains after you have passed. I think many people have an even harder time facing this question when they are still healthy and strong, but making these plans ahead of time is one of the kindest gestures you can make for the loved ones you leave behind.
When I was still in my teens, my divorced father, age 55, purchased a burial plot and picked out a casket. He wanted to take me to see the burial park and the plot. I resisted, but he eventually wore me down and we went to visit the cemetery. About 15 years later, he created very specific plans for where he wanted his memorial service and who should be invited. Again, I resisted his efforts to share these plans with me, but he insisted. In addition to telling me, in great detail, what he had in mind for the burial service and the memorial, he also showed me where he kept all his important papers and took me to the bank to show me how to open the safe-deposit box where he kept some gold coins and other valuables.
It upset me to think about him dying; he wasn’t sick at the time and I couldn’t figure out why he was making all these seemingly-premature plans. Of course, years later he did die and it was fairly sudden. Amidst the shock of his passing I realized I did not have to make any decisions; all I had to do was put his plans in motion. It was the greatest gift he could have given me.
My father chose to be buried. Now, thirty years later, my husband and I have chosen cremation and having our ashes scattered at sea near our Northern California home. The Neptune Society and the Trident Society (both subsidiaries of Service Corporation International) have pre-need programs for cremation. There are other cremation programs, but these two have been around the longest and that seemed important for a decision like this. They both have 5-year financing plans and other payment options.
There is also a green burial option today that may be appealing to you if you are concerned about traditional burial’s impact on the environment and use of open space.
As with so many later-life concerns, baby boomers are changing the landscape at the end of life. I think we can expect to see many more new concepts arise in the next two decades as this large population cohort enters the final decades of life.
When most of us go online to our internet banking account and set up a direct debit to pay a bill, we probably do it swiftly without much thought. But in reality it’s not that easy. In fact, there are a lot of complex processes involved in how we manage our finances, which older people, especially those with dementia, often struggle to deal with.
Dementia affects an estimated 850,000 in the UK, with numbers expected to rise to over a million in the next few years. Each year, dementia care is costing £26.3 billion in the UK alone. Most of this involves care in nursing homes and supporting people with dementia with their daily activities.
If we look at the whole raft of daily activities a person does, such as preparing a hot drink or a meal, or doing the laundry, financial management is one of the earliest tasks to deteriorate in dementia. These processes are complex, which is why people with dementia often struggle to count change, use a cash machine, pay bills or manage tax records sometimes even before their diagnosis.
Daily activities as a whole are often underpinned by a complex network of cognition. This can include different types of memory for past and future events, so the need to remember to do a task at 8pm tonight for example, involves problem solving skills, and attention. But there are other factors that can hinder someone when performing a task, such as motor problems or their environment.
In a recent analysis of a large data set collected from 34 clinical centres across the US, my colleagues and I looked at what kinds of behaviour are a warning sign for problems with paying bills and managing taxes in people with dementia.
When we obtained the data set, we only looked at people with dementia living in the community, who also had a family caregiver, and a diagnosis of the three dementia subtypes: Alzheimer’s disease, behavioural-variant fronto-temporal dementia, and Lewy body dementia. We then performed an analysis using statistical models to help identify the degree to which certain factors – such as language or motor skills – can predict a particular outcome. In this case, paying bills was the outcome for one model, and managing taxes was the outcome for the second model.
We found that between 11% and 14% of the ability to manage those financial tasks is predicted by executive functioning, or problem solving skills, language, and motor problems. So this means, if a person has problems solving difficult tasks, problems with language, they fall frequently and are moving slowly, and are also more likely to also struggle with financial tasks. Slowness and falls are particularly prominent in people with Lewy body dementia, which is different to Alzheimer’s disease, the most common form of dementia.
This knowledge can help people with dementia. Older people, including people with dementia, can often be subject to financial exploitation. This can be through online or telephone scamming, or knocking on someone’s door trying to sell something. And when people with dementia struggle using internet or telephone banking, they may be more prone to telling strangers their bank details.
One way to support people in managing their finances may be to provide training to improve their cognition. It’s important to bear in mind that dementia is neurodegenerative. So while we can help people maintain certain skills for longer, there will come a point where full support for finance tasks is needed. This could involve arranging a lasting power of attorney and naming a person that is trusted to look after financial decisions.
Another way may be to adapt the homes of people with dementia to avoid falls and allow them to move around more freely. In our analysis, we found that falls were linked to poor finance management, meaning that noticing your loved one fall more frequently than usual could be a warning sign that they may also struggle managing their finances. If we can drag out the need for full support for as long as possible, we can help someone stay in their own home for longer. And that is exactly where people feel the happiest.
Other, larger financial questions loom for people with dementia, such as inheritance and dealing with payments for formal care – both at home and in future in a nursing home. These are big financial concerns, which should be discussed once a diagnosis is made, but ideally done before. That way the person is better able to judge what they think should be done with their money, and is less likely to be financially exploited than in the later stages of the condition. The Alzheimer’s Society has also produced some good further guidelines on how to deal with financial abuse in dementia.
While it may be the last thing someone wants to think about who has just received a diagnosis, the best way to avoid financial abuse is to put things in place right away. If that isn’t motivation enough, staying independent in all sorts of activities improves well-being. And that is our ultimate goal, whether we have dementia or not.
Making plans for the end of life is important, but it’s a topic a lot of people tend to avoid. In fact, surveys show that some 60 percent of Americans lack a will or estate plan.
Yet, if you were to ask, most of them would assure you they want to care for their family after they die. They want to safeguard the assets they’ve carefully built over the years, keep them in the family, and make sure Uncle Sam doesn’t take the lion’s share.
How do you find out if your own parents have taken care of their plans? Adult children find it challenging to talk with their parents about such things. The subject can be sensitive and emotional. You may worry about appearing self-serving. Yet, it’s important for you to have such details so that you can be better prepared.
Here are some ways to make the topic easier to broach.
1. Watch for off-handed cues, such as your father mentioning his mortality or the reference to having attended a friend’s funeral. This is an opportunity to mention that as much as you don’t want to think about it, you want to respect their wishes, should a critical health situation come into play. Do they have an advance directive and power of attorney? Tell them you need to know in order to help carry out their wishes.
2. Ask your parents for advice on your own estate plan. Inquire as to how they have handled their own will or trust, and open with such questions as, “Who is on your team of professionals for your estate?” Refer to having reviewed your life insurance policy to make sure your beneficiaries are current and ask if they have checked theirs lately to make sure their beneficiaries are up to date.
3. Set an appointment to talk with your parents. If an opening does not come up to talk about this casually, set a time with them to discuss it. Let them know this meeting is about making sure their wishes for the future are respected. When you meet, assure them that you don’t want to guess about their desires and have some questions that address some delicate but important areas.
Once the door opens for you to talk with them about this, be sure you don’t shut it quickly. Assure them you have asked for this conversation in order to make sure they are well taken care of.
Once you begin exploring the details, don’t put your parents on the defensive. Asking why your parents have decided certain things the way they have can cause sensitivity. Instead, as they share information, mirror this back to them so that they feel heard.
An example would be, “What I hear you saying, Mom, is that you prefer to be cremated rather than buried, is that right?” Take it slow, allow them to express feelings about the choices they have made for their future. If they are reticent to talk about money, tell them numbers are not important – you just want to make sure they have planned well for what lies ahead.
If you can set the stage for an honest and candid discussion, be sure you include addressing the following four things: (1) A will or trust with a coordinated estate plan; (2) an advance health care directive; (3) a durable power of attorney; and (4) a list of assets and where they store important documents you might need when the time comes.