4 Tips for Talking to Your Parents About Death

Earlier this year, I wrote a blog about how important it is to prepare for end-of-life decisions you might have to make on behalf of your parents. I wrote about advance directives, and having important conversations with doctors and family.

I culled so much good advice from books and articles that it inspired me to talk to my own family.

Here’s how that went down.

Me to Dad: So, Dad, I’m writing a blog about preparing for end-of-life decisions and it occurred to me that we haven’t really talked about what you and mom want.
Dad: You think we’re DYING!?
(End of conversation)

Me to Sister: So, I’ve figured this all out. I’ll tell Mom and Dad that you should be the financial power of attorney because you’re good with money and I’ll be the healthcare power of attorney because I’m good with healthcare
Sister: * ? *
Me: Oh, see, I was thinking we should get Mom and Dad to focus on creating their advance directives — you know, end-of-life planning
Sister: Is there a book I can read about this?
Me: You know I’m an expert, right? Don’t you trust me?
(End of conversation)

See? THIS is how the experts do it. I should add here that my mother ended up getting a lawyer to create my parents’ “advance directives”. But we aren’t done yet. Because even though creating an advance directive is an important first step in helping others supervise end-of-life healthcare, it isn’t enough. Healthcare decisions are often nuanced and unanticipated Questions and issues are bound to arise. The living will is a guide but it’s not a blueprint. As much as we’d all like to avoid it, there’s simply no replacement for a face-to-face talk.

So this holiday, I’m going to try to talk to my family about this topic, as should you. Because our healthcare system has incredible capabilities to keep people alive way past the point when they realize they are still alive, leaving daughters and sons to agonize over what they think their parents would want.

Talking to your mom and dad about end-of-life can be intimidating, though. Sort of like talking to your teenager about sex. It’s hard and it’s not just one conversation! But, buck up because it’s just as important — and consider keeping the following tips in mind.

Start Small and Use Props

Dr. Angelo E. Volandes, author of The Conversation,, says you don’t have to march up to your parents and ask them how they want to die. You can warm up by starting with positive questions about what they enjoy doing, what they look forward to, what is the best part of their day, etc.

Another way to open the conversation is to use a prop. This can be a news story, a book about end-of-life issues or even a real life situation that you know about. You can say, “Hey Dad — I heard about Mary Jones’ mother and what they went through – can we talk about how to make sure we avoid that situation?”

One great prop I love is The LastingMatters™ Organizer which was created by my friend and colleague, Barbara Bates Sedoric. It’s a beautiful toolkit that helps you and your parents organize, plan for and talk about their intentions. You can find it on the website here, where there’s a Daughterhood discount code to help with the cost.

Use Open-Ended, Non-Threatening Questions

Once you’ve opened up a comfortable dialogue, you can move it along by asking open-ended questions.

In her book about navigating caring for aging parents, Life: The Next Phase, my friend and Tucson Daughterhood Circle Leader, Jodi Hempel and her co-authors, suggest questions such as “What is important to you? What especially worries you?” And to follow those with “What if” scenarios.

At this point, you may be wondering what these questions have to do with whether or not your parent wants a feeding tube. Well, they give you important clues about your parents true values, what they most care about… is it pure time left on the planet or is it the quality of that time — this is what you are trying to suss out.

Document What Your Parent Wants

While you’re having these conversations with your parents, you may want to record them with your phone or at least jot down some notes when you’re done. Even though these aren’t official legal documents, they could end up being an incredibly helpful reference point when you’re in a crisis trying to remember everything.

Follow Up with Medical and Legal

Don’t forget to consult with your parents doctor and lawyer. They’re an important part of this process so make sure they become part of the team. You want to make sure you have your parents wishes in writing and have designated someone to be their healthcare decision-maker. Having your parent talk to a doctor can really help sort out what kinds of decisions they can make now and what those decisions will mean later.

In our society, there’s such a strong tendency to avoid talking about death. It’s makes us uncomfortable. And so we wait until our parents are too sick or too impaired to provide insights into what they’d want. A friend of mine shared with me that her father’s rapid decline occurred before they could discuss his wishes and it thrust her into a shocking and difficult situation. So, her advice and mine is DO IT NOW!

If you want help talking about death or want to bring this topic into the open, I encourage you to look for a Death Cafe in your local area. Death Cafes are groups of people who get together to eat cake, drink tea and discuss death with no objective, agenda or themes. Our amazing San Diego Daughterhood Circle leader, Karen Van Dyke leads the San Diego Death Cafe (also!!) and taught me about this wonderful organization.

Good luck and let me know how it goes!

3 Resources to Ease Caregiver Money Worries

In a recent survey, AARP found that about three-quarters of all caregivers spend, on average, 20 percent of their household income on caregiving.

This is on top of the estimated $470 billion in unpaid care that they provide; and doesn’t include the potential lost income due to work-related strain that over half of caregivers report.

It’s clear that caring for a family member creates a financial hardship for many, and even a catastrophe for some; especially when caring for someone with dementia or Alzheimer’s Disease.

If you’ve experienced it, you know that there’s nothing worse than feeling financially strapped! Especially if you’re also feeling overwhelmed by caregiving responsibilities. So, if you are facing economic strain because of a caregiving situation, here are a few organizations that may be able to help.

Area Agencies on Aging (AAA)

The official name is “area agency on aging” but you may know these organizations as senior centers, and there’s one in nearly every community. Their charge is to help “vulnerable older adults live with independence and dignity in their homes and communities.”

Sometimes they have programs for families in need. Other times, they can point you in the right direction. If you need help, you should start here. The national association of area agencies on aging (N4a) has a tool that will direct you to your local AAA. Or, you can call 800.677.1116.

National Council on Aging

The National Council on Aging (NCOA) is a not-for-profit organization that advocates on behalf of older adults and their families. And, if you find yourself helping your parents with basic living expenses, NCOA has a great tool for figuring out whether there are programs for which they might qualify. It’s called, BenefitsCheckUp.

NCOA also offers an educational program to help you navigate Medicare, your parents’ health insurance program. It’s called MyMedicareMatters. It provides unbiased information to help you and your parents make decisions about the options that best meet their needs.

If you’re worried about how your parents are managing their money, you can direct them to EconomicCheckUp, which shares tips and in-depth advice on a range of issues like managing money in retirement and protecting yourself from scams.

I love the NCOA educational tools and programs!

Your State Medicaid Agency

Medicaid is the state-run program that provides medical insurance to low-income individuals, but it also provides coverage for nursing home and in-home care when your parent has exhausted most other resources.

Read: 5 Common Misconceptions about Medicaid

In addition to providing important financing for your parents’ care when they run out of money, some state Medicaid programs will also pay family members to provide care. This type of Medicaid program is often referred to as “cash and counseling,” and it’s offered in many states. You can get information on these services in your state by checking with the resources listed above, and by searching online for your state’s aging and disability resource center (ADRC) (e.g., Minnesota aging and disability resource center). The ADRC is another organization that’s available to help direct you to needed resources; especially to help you connect with available Medicaid services.

Also Read: The 4 Most Frequently Asked Questions About Medicaid

In addition to checking out these organizations, there are also a few other things you can do:

Have a Talk with Family

It’s not uncommon for a parent to reimburse a son or daughter for expenses related to caregiving or for providing direct care. If you go this route, make sure to work out a formal contract, preferably with the help of an elder care lawyer who can make sure you don’t run afoul of legal issues.

Family and money is always a challenging combination. But, many families are able to work out all kinds of creative solutions when one adult child is shouldering more of the work and expenses than others.

Also read: Caring for Aging Parents — A Sibling’s Survival Guide

Set Boundaries Around Your Parents’ Finances

Remember! It’s also okay to say “no” to some expenses. You can’t fix every problem. And, if your parents have been irresponsible about money, you can’t protect them from the consequences.

Check out this past week’s Washington Post financial column, written by Michelle Singletary, Don’t Let Your Parents Drag You Under Financially.

Also read: 5 Lessons in Setting Boundaries that Every Caregiver Must Learn

Advocate

Finally, you can alert your state and federal legislators about your experience as a caregiver, and particularly the financial stress it creates. It’s hard for anyone — even policymakers — to understand what caregiving involves if they haven’t been through it.

The good news is that there’s a growing recognition of the challenges you face AND the value of the work you do. Reports like the one from AARP recognize your contribution, and the positive impact of the care you provide.

The more you can get involved and alert public officials about the trade-offs you make to provide this care — for example, trade-offs between your parents’ care, your retirement savings and your kids’ college tuition — the more likely it is we’ll see changes in law that allow for better economic supports for family caregivers… policies such as caregiver tax credits and better family leave.

Even more importantly, we need to alert policymakers to the need for an insurance system to cover the costs of long-term care. Medicare doesn’t cover home care or assisted living, so families pay out of pocket or provide the care themselves. If a family member has Alzheimer’s or Dementia, the financial impact is often catastrophic.

An insurance system that protects older adults against the catastrophic risk of long-term care costs would also go a long way towards creating greater economic security for their families and caregivers. In fact, it would be the most effective way to truly improve the lives of caregivers.

Caring for Aging Parents – A Sibling’s Survival Guide

There are many heartbreaking moments to navigate when our parents start to depend on us for care. But few are as painful as fighting with our siblings.

This doesn’t always happen. Sibling relationships can be a source of strength and comfort as parents grow older. But, more often than not, friends tell me about severe conflicts they have with their brothers and sisters, and the suffering it causes.

Like so much to do with caregiving, these clashes often come as a surprise. No one imagines that by caring for their aging parents, they’ll be thrust into such emotionally charged interactions with their siblings. It’s such a shock to go from seeing family once a year over the holidays to navigating our parents needs together daily.

Taking care of parents puts incredible stress on interactions between adult children. The fragile scaffolding of sibling relationships, so carefully constructed over a lifetime, often comes crashing down.

And long buried grievances come up for air.

The estrangement of a sibling is scary because it tugs on the primitive fear of losing connection to your tribe, to the people who are supposed to stick with you no matter what, to be there when everything else falls away.

I suppose the good news is that the pain a relationship causes is directly related to the opportunity for healing. The conflict that makes you want to throttle your sister or brother sits in the crosshairs of where you can most effectively aim your efforts for change and reconciliation.

Read More

Medicare Therapy Rules Made Easy

Most of us take for granted that we can get out of bed in the morning and do all the things necessary to head out and face our day. You know… the simple everyday things like moving around our house, showering, getting dressed and eating breakfast. I might be a little foggy most mornings but I don’t think about whether I’ll face an enormous challenge in measuring out the coffee or pouring the milk. The point is the routine is just that…routine.

But if your parent is frail, you know that there’s nothing routine about these activities — that for them, doing even the simplest things just can’t be taken for granted anymore.

The mobility and functioning that’s essential to independence and safety suddenly becomes a big effort. And, Daughterhood really happens when we have to get involved in helping our parents do the things that they can no longer do by themselves. This is when their lives and ours get hard.

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A Go-To Guide For Understanding Your Aging Parents’ Rehabilitation

I was 30 weeks pregnant with my daughter when a routine doctor’s visit uncovered the fact that a disconnected placenta had cut her off from getting food and water. Essentially, she was starving in utero. Later that same day, my girl was born by emergency C-section weighing in at just over 2 pounds.

Her early birth kicked off years of specialized healthcare and education, most of which was therapy to help her walk, talk and manipulate the tools she’d need to do even the simplest things like eat, use a pencil, and play with her toys.

I’m happy to report that today she’s a strapping 5’7” teenager who plays softball and the piano. And, while her gritty personality had a lot to do with her success, so did the physical, occupational and speech therapists working with her.

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Creating a Resilient Response to Loss: The Special Challenge of Dementia

I’ve said many times that few things are more disorienting than the shift from being cared for by your parents to caring for your parents. The only thing that makes it harder is when your parent (or spouse) has dementia. This is quite possibly the most challenging of all situations.

Every Sunday, I allow myself the pleasure of spending time on Krista Tippett’s website, www.onbeing.org. A couple of weeks ago, I stumbled onto a podcast entitled, “The Myth of Closure” with family therapist Pauline Boss.

She’s coined the phrase “ambiguous loss,” which I find revelatory. Ambiguous loss refers to “a loss that is unclear, that has no resolution or closure”…. Where a loved one’s “status as absent or present remains hazy.

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Essential Websites for the Daughterhood Journey

These days you can barely open up your internet browser without stumbling across a website for caregivers. On the one hand, this is great but it can also be a problem — There are so many websites with advice and information for caregivers that it can be hard sometimes to find what you need or to even know where to start.

So I want to share some of my favorite sites, organized by topic — in the hopes that you can get what you need more easily.

But before I do, please promise me that you won’t let all these websites and the information they provide make you feel MORE overwhelmed than you already feel. You don’t have to consume it all in one sitting and you don’t need it all right now.

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7 Must-Have Books for Caregivers

Experts and former caregivers write books and blogs, and create websites to provide information that will help make caregiving easier. But they aren’t solving the real problem, which is that it’s really overwhelming to have to read and sort through all these resources in the first place.

It makes you feel like you have to become an aging expert – and practically learn an entirely new profession — just to make sure your parents are safe.  It’s a whole other job on top of the one you already have and the care you are already providing your mom or dad.

Also, if you are like me, there are just so many things you’d rather do — like walk your dogs or  spend time with your kids — than frantically search online for information. But what often happens is that you aren’t prepared and then you get caught out! – mom’s in the hospital and you do NOT know about observation stays and hospital-induced delirium or how to find a decent rehab situation and then you feel surprised, scared and like a failure!!

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