The author and her father. Their experience with poly-pharmacy — a condition with symptoms similar to dementia, brought on by a cocktail of prescriptions — led Julie Halpert to begin facing up to the end-of-life questions most of us would prefer to avoid. (Photo courtesy Julie Halpert.)
But families also need to take steps to face the future. Many don’t consider addressing end-of-life issues until a parent gets sick. Even when parents show symptoms that they’re failing, children may be slow to accept that they need to take on the parenting role. “They are, in many cases, in denial,” says Patricia Grace, founder and CEO of Aging with Grace in Philadelphia, Pennsylvania, a group providing resources for elder care. “To see the person who cared for you and took you to buy your prom dress or taught you to play sports dehabilitated and soiling themselves is devastating,” she says. At the same time, parents are often reluctant to discuss a delicate subject that implies their future death. That typically results in adult children having to make difficult decisions in a crisis—decisions that may even conflict with their parents’ desires. For both generations, it’s hard to think about the inevitable. But preparing in advance will help lighten the burden of what promises to be a stressful situation. Here are some tips on how to get there.
Jeffrey Halter, M.D.
Have “the talk”
Is it too early for you to discuss these issues with your aging parents or adult children? If you think so, it’s probably the perfect time: when you can address the questions early, while everyone is still healthy. This conversation should take place in the parent’s home, ideally with all of the siblings present. “It’s better to have these kinds of discussions around a celebration when everyone is doing great than when faced with a catastrophe,” says Jeffrey Halter of U-M’s Geriatric Center. Children can begin by asking a parent if they’ve given thought to what they would do if they couldn’t take care of themselves. Keep the tone positive, saying things like, “We want to help you, just like you helped us, but we need to know your wishes.”
Head off sibling rivalries
When a parent’s health begins to decline, it can set off a firestorm of emotions among the adult children. These events can bring children closer together or tear them apart—and often do a little of both. Conflicts over money, resentments from those assuming the largest burden of a parent’s care, even lingering divisiveness over who is the “favorite child” can make end-of-life situations incredibly stressful. These types of tensions can get in the way of smooth decision making, Langa says. He’ll often suggest that siblings air their concerns, since merely acknowledging the tension can be a first step in moving forward in a healthier way. It’s best for siblings to sit down together, without their parents, and discuss a future plan of action, should parents become ill.
Ken Langa, M.D.
Plan, plan, plan
Patricia Grace says that retirement living can cost as much as $50,000 a year, “so funds will deplete quickly.” Families need to speak frankly about what aging parents want, what they can afford, and what children can contribute, if necessary, to their living expenses.
- Write a living will, and a regular will.
- Assign a durable power of attorney.
- Compose a regular will.
- Discuss plans for future residence.
- Plan your funeral, setting aside funding for it if possible.
- Get a medical quarterback—geriatrics centers like U-M’s are sprouting up nationwide and can coordinate a senior’s care.
Cherish the present.
As parents and adult children go about the emotional process of getting end-of-life affairs in order, this is a good time for both generations to let each other know how much they appreciate each other. “Life is precious and short and I think we should not take our families for granted, young or old,” says Jan Busby-Whitehead, M.D., Professor of Medicine and Director of the Center for Aging and Health in the UNC School of Medicine. Express your concern, care and love and spend time with each other, if possible, so there are no regrets at the end.
Gina Betcher - 1996
Hello,
I appreciate the depth of input shared here. My mother has experienced mental illness since my own childhood. She lost custody of me to the state and several years went by until we were reintroduced. I have no siblings and the long years of seeming estrangement between my mother and I cause her to back away from disclosing what should take place when something debilitating happens to her. Her personality is tough to navigate.
Any advice could be a help to me. I have talked extensively to an aunt, my mother\’s sister, about approaching the subject yet there lies another difficult dance.
Thank you,
Gina Betcher
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Karen Klein - 1979
Thanks for publicizing this important issue. We at Silver Planet work to empower boomers and seniors to make these informed decisions about how and where to live as we age and face changing life circumstances. Not only do we provide all of the resources discussed here in our 20,000 pages of content, but we offer experienced Silver Advisors to help you navigate through these difficult issues. http://www.silverplanet.com Karen Klein, CEO, Class of 1979
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Alice Furumoto-Dawson - 1995 PhD, 1990 MPH
Thank you, Julie Halpert – my own father died 3 wks ago, at home, surrounded by family. Health care professionals & everyone else really do need to understand, discuss and ultimately advocate for compassionate end of life care that respects the human being at its center. How much harm has been done by not doing so? In my father’s case, he didn’t want a feeding tube or to die in a hospital.
We’re grateful that in Honolulu, Hawai’i, we were able to have the support of Hospice Hawai’i for him, and for my sister, who took on the major responsibility for the past 3 years. Yet support and access to this kind of planning and care isn’t available to many Americans, particularly those less well off than graduate degreed pros – unless there’s a drastic turn-around restoring end-of-life care in the much needed real reform of American health CARE (not just private insurance, hospital systems & pharmaco’s getting paid).
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Erica Danos - 1985, 1989
I know this article is about the necessity of and issues surrounding potential declines in one’s parents’ functioning, but as a Senior Care pharmacist reading this story, I couldn’t help to wonder but “what was anybody involved in this man’s care thinking?” This includes any dispensing pharmacist who saw a profile of 18 medications and the various docs who prescribed them. Fortunately, they had a pro-active internist who did some paring down of that hideous regimen. In the elderly, as many as 40% of hospital admissions are due to side effects of drugs. As we age, medications that were appropriate for us at an earlier age or condition no longer may be. I urge ANYONE who is a Senior or caring for a Senior, to check out the services of a senior care pharmacist in their area. A list may be found on the website of the American Society of Consultant Pharmacists (ASCP). The fact that a pharmacist was only mentioned in 1 sentence (while a physician was extensively interviewed) further highlights the lack of awareness of pharmacists as the medication experts.
On a different note, the article touched on a very imnportant issue; the vast majority of families have relationship dynamics that fall between “the Brady’s/the Huxtables/the Cleavers” and truly dysfunctional. Guilt abounds. Starting out with a neutral 3rd party mediator is probably the best advice for all.
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Bernard Klein - 1988
Good article. There is a great need for our culture to stop denying our mortality and face end of life issues. I do wish the article had talked a bit more about advance directives where a person can spell out exactly what they will, or will not, accept in life extending (death prolonging) medical procedures. A good place to do this is to have a “Medical Proxy” section in your Power of Attorney document.
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Laurence Harmon - 1965, 1968
This is an exceptional, detailed article that deserves wide dissemination, not merely because it highlights “poly-pharmacy”–which will be new, essential learning for many–but also because it is a very useful primer about end-of-life issues that all of us Boomers need to understand and prepare for. Thanks to Aging With Grace for publicizing it!
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Elaine Adler - 1960, 1963
Thank you for this article. As a hospice volunteer who sits with the dying, I see families at all different stages in their preparedness for the end. And 9 years ago, when I had to place my own mother in a dementia unit at the age of 88, I became aware of the difficulties when one child sees the need and the other is unable to admit that all is not right. As this article suggests, I turned to a social service agency to help so I didn’t have to fight with my brother.
Whenever I try to bring up end of life issues with my two 40-something sons, they shy away from the discussion, not wanting to think about their still energetic 70-year-old mother in a compromised state. I don’t know if it’s true, but one of the social workers who helped with my mother told me that sons have much more difficulty accepting their mothers’ decline than do daughters. I am emailing this thoughtful article to my sons with the hope that it will help them face possibilities and be prepared for them, willing to engage in this important dialog.
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Albert MacPhail - 1954 Med
‘Stop all Medications!’ The first order written on the patient’s chart by a prominent consultant called in on a complicated case. Often the patient started to improve in hours.
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Scott Williamson
The last comment about a unnamed consultant stopping all meds concerns me enough to comment. While it sounds like it was warranted in this case, just stopping all medications as a general rule could be dangerous. According to what I’ve read in the area of coordinated care, polypharmacy is the reduction of meds – not the stopping of meds. If someone isn’t in a situation where their care is coordinated by their primary care physician, as in a PACE program, then they – or their caregiver – need to take on that role. Keep a complete list of medication orders (including vitamins and suppliments) and take it to appointments and talk to the providers about it. The most important element to that is Talk to Your Doctor.
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Kaye Swain
Very interesting article! I learned a lot from it AND from the comments! Thank you. 🙂
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Dennis Tyler - 1977
This son is…”willing to engage in this important dialog.”… I loved my mom, mother to sixteen children, and I remained close enough to monitor her demise and end (game) reality. It was what it was, good, bad, ugly, and pharmacy demented, with her death occurring less than fourteen months ago, less than two and a half years after her spouse and my father died. Both parents were octogenarian. The old GM was life well spent for dad and mom. After her last birth, mom had enough energy to share as a ten year employee with the largest hospital in her venue, long before the ugly drama of the end games emerged. Fall out territories were sadly discovered by her offspring.
Who would have thought family members would
have issues such as they had indeed? Alas,
twas a difficult discussion after the matriarch’s serious stroke rendered her at least paraplegic….Visiting nurses and doctors on mom’s medical team helped her keep
some measure of dignity as her boomer progeny
took each other’s insults as the chips fell
where intensifying personalities allowed them
to fall….Dialog was late in our hallowed
family setting, as silence was more or less
inculcated therein….So do get that talk out
amongst yourselves, find whatever good help you can latch onto to assist you, and perhaps
most of all: BE STRONG!
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Kenneth Fisher
Excellent article on a difficult but important topic. More information is available on my blog, http://drkennethfisher.blogspot.com
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