In a cartoon by Jennifer Berman, a banner hangs above rows of auditorium seats reading, “Adult Children of Normal Parents Annual Convention”. Just two individuals are sitting in the otherwise empty event space. We sense the truth at the heart of her humor. The great irony of having eldercare conversations is that we all can feel alone, as though no one else is navigating the complicated web of relationships and history as they try to talk together about what it means to age well. In truth, we are not alone. As an aging society, millions of Americans are wrestling with how to care for aging loved ones. While every family is different, we commonly hold the challenge of having honest conversations in light of the past, present, and future.
Why We Aren’t Talking: Family dynamics and difficult decisions
Part of human behavior is that we tend to avoid things that we don’t understand, things that we fear, and things that we anticipate will cause undesired conflict. Difficult eldercare conversations contain all three of those dynamics and they become the elephant in the room. Though families are not talking about their elephant, there is a lot of effort that goes into the care of such a large animal in such a small space. We spend energy ruminating and feeding the fears, we spend energy maneuvering around it, we spend energy cleaning up after issues, but acknowledgement rarely gets our intentional energy and families are often drained even before they begin to speak honestly with one another.
In the words of Mark Twain, “Denial…ain’t just a river in Egypt.” In the case of the difficult topics in eldercare, what we don’t know, or what we choose not to know, can indeed hurt us and limit our choices. By delving into the most difficult conversations we are not only finding resolutions for logistical needs, we are honoring and protecting the choices of one another. Here are 3 of some of the most difficult conversations along with tips, insights, and questions to think about:
1. Finances and Long Term Care
When it comes to families talking about the developing needs of aging parents such as long-term care, housing, and increased medical care, the topic that seems to touch all other topics is money. How will we pay for care and who is picking up the tab? When we go out to dinner the customary reach for the check is often an elaborate ballet of offers and declines. However no one is eager to reach for the long-term care bill. One of the largest gaps in Medicare is that it does not cover long-term care costs such as home care. When a loved one needs assistance with managing the household, a chronic illness, or help caring for a spouse after a hospitalization, it falls to the family to navigate how they will meet the need. Some important guidelines to talk about money are to:
- Start the finance conversation with values instead of logistics. Each generation and person thinks about money differently based on their values and life experiences. Knowing your loved ones’ style of managing money can help you understand some of the behaviors and money choices they are making.
- Do some research into the costs associated with options for care. Talking about paying for care should never be isolated from talking about what your loved one wants. Finances are the scaffolding to support the life that they want. Look for care options that have longevity and will meet foreseeable needs. Multiple moves can drain financial resources unnecessarily.
- Do an inventory of benefits with your loved one and express that you want them to be able to take advantage of everything they are entitled to. The National Council on Aging has a wonderful benefits checkup resource at https://www.benefitscheckup.org/.
- Set expectations of what you are able to financially contribute without harming your own financial security. Often adult children are beginning to care for aging parents at the height of their earning potential and can put their own savings at risk when they prematurely leave the workplace to care for aging parents or dip into their own retirement savings.
2. Taking Care of Parents Who Didn’t Take Care of You
Taking care of aging loved ones can be emotionally challenging in the best of family dynamics, but in the many cases where adult children were neglected or abused in a variety of ways, childhood trauma can deeply complicate the instinct to care for aging parents. Having difficult conversations can present the fear of triggering old patterns and memories of abuse. Often at the end of life, the drive to reconcile is strong. Adult children can feel that the window of opportunity to hear the words they never heard is closing. Dr. Barry Grosskopf, M.D. in his book Forgive Your Parents, Heal Yourself, candidly writes about the power of visualizing an abusive parent’s story. He says, “When parents act in harmful ways toward their children, it is a sign that something harmful once happened to them…So much of our family’s history is hidden from us in plain sight. Later, as we learn more of our parent’s truths, we are startled into new awareness with each revelation.”
In an incredible interview on NPRs “Tell Me More”, authors Eleanor Cade, Marion Somers, and Leslie Morgan Steiner gave incredible advice to adult children of abusive parents:
Eleanor Cade: “I like to think of caregiving as a cycle…a cycle suggests a beginning and an end. And as we close and are there for the closing of our parent’s life, it gives us the opportunity to start a new cycle with our children, and our spouse, our current family.”
Marion Somers: “No matter what the circumstances are, you must always be honest with your own emotions. You can't make believe everything's hunky dory when it's not. So you start with that. And to me, there's no sense in going over all the would've, could've, should'ves that could not be changed at this part of history. An older person usually is fragile. They may be losing some of their capacity. Your own time constraints are going to be limited because you are now the caregiver not only working but taking care of your children and now you have a parent. Be realistic at all times and figure out what you can do…And then you figure out what your capacities are as a human being. How much energy can you put out without putting your own health and well-being at risk? And in this process, you'll learn more about yourself. Always deal with what you can deal with and ask for help.”
Leslie Morgan Steiner: “You know, I think sometimes we in our culture romanticize the relationship between parents and kids, particularly when death comes around and you think that coming to peace with a parent is some great reconciliation… I think if I had held out for her to say she was sorry I never would have. I think part of finding peace was realizing that peace came from my own heart and it didn't necessarily have anything to do with her or confronting her or trying to get some sort of confession out of her. That was never ever going to work. Part of your grief, if you had a complicated relationship with them, is grieving that they're dead but also grieving for the relationship you never had with them.”
Listen to the full interview online here: http://www.npr.org/templates/story/story.php?storyId=129106620
3. Collaborating with Siblings
Whether it is the result of a slow decline over time or a crisis, the responsibilities of meeting the increased needs of an aging parent can be difficult to divide up among siblings. Old favoritism, rivalries and roles can seem to intensify overnight. Inevitably, siblings are going to have different ideas about the best way to care for an aging parent, what is acceptable and unacceptable in each difficult decision that has to be made. Geography plays a huge role in defining who takes the lead as often the closest adult child bears much of the responsibilities that require a physical presence in the home. Here are a few tips to help siblings navigate the conversation and collaborate with one another:
- Have regular family meetings when all siblings can be present. It is important that the responsibility for conversation and resolution falls equally among the group and that each voice is heard.
- Call in a professional geriatric care manager to act as a mediator and advisor to the family. They specialize in the care of aging adults and can present care options and help families avoid the pitfalls of difficult conversations and decisions.
- Geographical distance can make some siblings more removed from the situation than others. For long-distance caregivers, it is important to not criticize the care a local family member is providing to an aging loved one. Ask how you can contribute and support local family. This might come in the form of research, care coordination, finances, quality listening, etc.
- Make sure that aging adults have their voice heard and get the opportunity to articulate what they want for themselves. Often in the chaos of siblings trying to collaborate, the center of conversation can move away from the aging parent. By allowing the aging adults to choose powers of attorney, and articulate their needs the focal point of decision-making will stay on the aging adult instead of bouncing from sibling to sibling.
Finding New Symbols in the Elephant in the Room
In many cultures, the elephant is an incredibly symbolic animal. They often represent high intelligence, good memory, wisdom, power, stamina, longevity, a cooperative spirit, and loyalty. What if the elephant in the room stopped reminding us of everything that we are afraid to talk about and started to remind us of our own power, wisdom, strength, and capacity to face the challenges ahead? What if it told us what Dr. Suess’s character, Horton, knew to his core, “I meant what I said, and I said what I meant. An elephant is faithful 100%.”
Forgive Your Parents, Heal Yourself: How Understanding Your Painful Legacy Can Transform Your Life
by: Barry Grosskopf, M.D.
Taking Care of Parents Who Didn’t Take Care of You: Making Peace with Aging Parents
by: Eleanor Cade
They’re Your Parents Too!: How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy by: Francine Ruoos
Mom Always Like You Best: A Guide for Resolving Family Feuds, Inheritance Battles, & Eldercare Crises by: Arline Kardasis, Rikk Larsen, Crystal Thorpe, Blair Trippe
How to Say It to Seniors: Closing the Communication Gap with Our Elders
by: David Solie, M.S.,P.A.
A Bittersweet Season: Caring for Our Aging Parents- And Ourselves
by: Jane Gross
Can’t We Talk About Something More Pleasant?
by Roz Chast This memoir told through cartoons was a 2014 national book award finalist in nonfiction.
Published on April 3, 2015.