When older parents struggle to care for adult children

Posted by Reeve Staff in Daily Dose on October 25, 2019 # Caregiving

by guest writer Beth Suereth, Founder and Principal, Caregiving Pathways

When Older Parents Struggle to Care for Adult Children

The driving force that enables adult children with spinal cord injuries to continue living with their family or even with a spouse is often their parents. These laser-focused family caregivers who provide daily hands-on and emotional and financial support worked long and hard to establish a framework that works for all involved.

But what happens when the parents become unable to provide that support because of advancing age? Ultimately, the cycle of life will leave someone who has a spinal cord injury without a parent as a primary family caregiver. Parents worry about this for years.

Turning the worry into action over time is the key to making sure there’s a family caregiver who will take the lead when the parents are gone and a network family and friends to support that primary family caregiver.

Start early
“The key is setting expectations early,” says Earl A. Pedersen, a financial advisor with the Special Needs Division of Allied Wealth Partners in Parsippany, NJ. “When you start planning in advance, everyone involved has time to think things through and develop creative ways for each family member to contribute to managing the situation.”

Earl’s sage advice is to work with an experienced estate planning attorney who has helped other families in similar circumstances. That way, families can learn some lessons — about finances, family dynamics, and more — from the successes and challenges of others. He advises revisiting arrangements whenever a life change or life stage affects anyone involved in providing care currently or in the future.

“You’ll also want a plan that includes a contingent, or backup, guardian or family caregiver,” Earl says, “in the event that the person who expects to take on primary responsibility is unable to participate as anticipated due to illness or injury.”

Actively build bonds
One mother I know recognizes that future family caregivers for her son are not going to be from her generation, so she is laying the groundwork for the next generation to take over. She works to keep all of her children linked to each other despite big age gaps, to make it easy for them to build bridges to each other in the future. She hopes to leave enough resources that the siblings can pay for home care and manage their brother’s aides rather than do hands-on care. But she is also communicating little by little that they may be contributing financially on a long-term basis.

A family vacation is a great way to build connections among generations and help future family caregivers appreciate the many joys and rewards of family caregiving. The Reeve Foundation’s Paralysis Resource Center will be hosting a webinar with some travel inspiration in their free Road and Rail Trips for Wheelchair Users webinar on Wednesday, October 30, 2019, from 2 to 3 p.m. ET. You’ll hear valuable perspectives from John Morris, an experienced advocate for accessible travel for individuals living with paralysis. John has flown nearly a million miles as a wheelchair user and triple amputee!

Recognize and foster the good
An additional complication for older parents is that they often experience health issues of their own, especially when they’ve neglected their health and wellbeing for decades as they cared for their child. That creates significant challenges, but some good can come of it. As adult children begin caring for aging parents, they become experienced family caregivers. They can take on responsibility for the sibling little by little. Ultimately, they can become well positioned to care for the sibling once the parents are no longer here.

Where to begin?
To start the ball rolling, ask the person who will be receiving care for his or her perspective. He or she could have well-developed ideas that family members may not be aware of.

Consider holding a series of meetings over time with family and friends. Start with brainstorming and eventually move toward gaining tentative commitments on different aspects of care. Meet with clergy, doctors, social workers, government agencies, and anyone else who has a perspective on the situation. Ask for creative solutions and what they’ve seen other families do. You may choose to include the person who will be receiving care in some meetings and not others, as appropriate.

And ask people on the fly — people like the many doctors, nurses, and social workers you’ll encounter over the years. Sometimes a quick, “Any thoughts off the top of your head on how a family might handle this situation?” can generate a valuable tidbit of information you can add into the mix.

When you start planning early, you have time to make meetings and quick questions a regular occurrence, which can take some of the sting out of thinking about the situation. You’ll also have time to investigate the increasing number of resources for family caregivers.

Eventually you’ll get a complete picture of the world of possibilities and formulate a plan. You can create the legal documents needed to ensure the plan unfolds as you wish and update them periodically.

You may worry that when you’re gone no one will care for your child the way you do. While that’s true, different is not necessarily bad. Sometimes others bring enriching things to the table that we wouldn’t have come up with. And the opportunity to forge deeper family bonds is actually a gift to all involved.

Resources for family caregivers
Consider the resources below to help you formulate your family’s plan for the future. The information can also help you provide context for family and friends as you prepare them for their involvement in the future.

For an enormous breadth of local, state, and national resources for family caregivers, call Family Caregiver Alliance at 1-800-445-8106 or visit caregiver.org/family-care-navigator.

A medical foster home could be a suitable option. Also see this U.S. News & World Report article on medical foster homes; it focuses on veterans, but medical foster homes are not just for veterans.

There are many overlaps among resources for those caring for someone with a spinal cord injury and families caring for those who are aging. Call Eldercare Locator at 1-800-677-1116 or find your local state-designated Area Agency on Aging to find out about resources specific to your family’s situation.

To find out about the financial aspects of lifelong care, talk to a special needs attorney. You can find one through the Special Needs Alliance, a national alliance of special needs law attorneys. The attorney can recommend a financial planner who can also help you manage the financial aspects for caring for someone with a spinal cord injury.

Beth Suereth
Beth Suereth founded Caregiving Pathways to teach family caregivers how to manage the hospital stay and the end of life. She is a Certified Caregiving Consultant and end-of-life doula. She works with AARP Public Policy Institute and organizations in the health care industry to support family caregivers and help them prevent complications that can lead to emergency department visits and hospital readmissions. Beth also teaches financial planners how to create personalized, practical end-of-life plans for their clients. And she works directly with family caregivers to help them manage a loved one’s hospital stay and end-of-life planning.

To learn more about Caregiving Pathways and to download a free easy-to-read guide to managing the hospital stay, visit caregivingpathways.com. You can reach Beth at [email protected] or 201-207-5602.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.