Source: Must-Know Statistics About Long-Term Care: 2019 Edition, Morningstar, 11/25/19
Ruby’s breast cancer diagnosis was alarming enough. But a stroke three weeks later changed everything.
Now, this matriarch of a large clan would need help being dressed and bathed. She’d need volunteers to pay her bills, restock the fridge, drive her to speech therapy, and gather up her insurance documents. The to-do list seemed endless.
Ruby’s family felt the responsibility to help, but they weren’t prepared. Her three adult children wondered if they’d be able to take time off work to help with transportation. A younger brother living on the other side of the state complained about the long-distance travel. Worse yet, a sister and a niece were having trouble getting access to Ruby’s bank account as her unpaid bills piled up. And Ruby’s eldest daughter felt like she was doing everything—and she resented it.
This scenario happens all the time to families. A health crisis catches them off guard. And then they have to scramble to make quick decisions—and work through the inevitable family conflicts. Could this scenario happen to you and your family? If it did, how would you and your family feel? What would you do?
We’ll share how to create a family caregiving plan so you and your family are prepared if you’re called on to provide caregiving to an aging loved one.
First, Why You Need a Plan—Now
You may be thinking: Ruby’s situation sounds bad, but my mom and dad are perfectly healthy. What’s the urgency?
The fact is, if you’re over 45, your parents are likely both over 75. If they’re in good shape, they could live well into their nineties. But, what if an unexpected illness or accident strikes out of nowhere? Would you be asked to provide caregiving? How much family assistance could you count on?
If Ruby’s worst-case scenario teaches us anything, it’s that you and your family would be wise to consider creating a caregiving plan right now. Having a plan in place before a health crisis hits your loved one will help you avoid the inevitable panic and sense of crisis that can paralyze families. In a crisis, mistakes get made, frustration skyrockets, resentments flourish, and festering family conflicts only get worse.
You can take steps to help avoid that panic scenario by developing your plan while time (and levelheadedness) is still on your side. Getting a head start can improve the odds your family will be ready to embrace their caregiving roles so that no individual family member ever has to shoulder the caregiving burdens alone when the time arrives.
Second, Forming Your Team
If you’re starting to think ahead about developing a plan to help mom and dad get through a future health crisis, consider adopting three essential strategies to help put your family caregiving plan in motion: First, summon your team. Second, start making assignments for future needs. Third, secure commitments.
Summon Your Caregiving Team
Make a list of potential family helpers
Grab a piece of paper—or, better yet, a laptop—and write down the names of all of your family members, even if you don’t yet know if they can be counted on to participate.
Call a meeting
If it’s safe to do so, try to meet in person. For your first meeting, it’s best to limit attendance to immediate family members—and it’s probably best to include mom and dad at this early team-building stage so they’re not blindsided later on. If family members prefer not to meet in-person, send a Zoom invite. If Zoom isn’t practical, set up a multi-person teleconference call.
Explain what’s at stake
The goal of this initial planning conversation is to map out a shared vision of family caregiving—one that anticipates providing an organized and thoughtful response if a future health issue affects your loved ones. The conversation should emphasize the benefits of preparedness as well as the risks associated with having no plan at all.
Make another list of potential non-family helpers
This list will include neighbors, reliable friends, faith-community or social-club members, etc. Members of the team need not all live nearby or have huge blocks of time to be of value. Plan to bring in these non-family helpers at a later date to help fill gaps that may develop as your plan moves forward.
Prep the group for assignments
In the next section, we’ll cover specific tasks. But the initial meeting provides a perfect opportunity to make clear that there may be caregiving work to be done. To help families prepare for their caregiving roles, the American Association of Retired Persons (AARP) has developed an excellent caregiver’s guide (“Prepare to Care”) that features a wealth of specific checklists you can download to understand potential future needs. We’ll take a close look at some of them next.
Make Assignments for Future Needs
Families need to figure out how to divide the future tasks fairly if the need arises. As you decide on your team’s tasks and assignments, consider these factors:
Family members who live nearby tend to provide most of the caregiving. But for family members who live inconveniently far away, there are alternative ways for them to pitch in. Some may feel comfortable providing financial assistance, while others could volunteer to make phone calls to arrange for needed services. There are lots of ways a family member can help from afar.
Every family caregiving plan needs a few key roles. First, you’ll need a designated family caregiving coordinator, who plays the lead role of understanding who can help, the role each person is willing to do, and documenting the plan.
Second, you’ll need a family communications coordinator; this person will keep a master list of names, phone numbers, and email addresses, and will track the tasks and availabilities for each team member. Third, you’ll need a finance coordinator, the family member who’s good with numbers and getting bills paid.
This person will organize bank statements, track down insurance policies, or volunteer to balance mom and dad’s checkbook when the need arises. Sooner than you think, mom and dad’s finances may require keen attention from a team member who’s good with details.
It might not be easy to get family members to focus on your loved ones’ future needs while they’re still in good physical and mental shape. For the best chance of success, it’s important to develop an atmosphere of trust during these initial meetings.
The reality is, you can’t force anyone in your family to do anything they don’t want to do or cannot afford to do, so the real trick is figuring out which task resonates best with which team member. To figure this out, you’ll have to dust off your best listening skills. Even when the conversations start to get awkward, it’s important to respect other viewpoints, keep emotions in check, and stay flexible.
Before anyone starts getting ahead of themselves with worry, encourage your designated fact-gatherer to do some homework: What’s the actual cost of enrolling in various Medicare or Medicaid programs? What about home healthcare or so-called aging-in-place options? In-home nursing care? Get realistic cost estimates and share them with the group.
Above all, don’t panic. Because your mom and dad are still healthy, you still have time to prepare. Your immediate goal is for your family to get ahead of the tough decisions before an actual health crisis catches everyone by surprise.
Tasks–Who Does What
For each task in the family caregiving plan, attach names to them—in writing!
The AARP’s “Prepare to Care” brochure provides a comprehensive task checklist. While none of these tasks require immediate implementation until your loved ones find themselves in a compromised health situation, the following sample list of task categories can help your team get organized now:
- Healthcare tasks: Monitoring for physical and emotional decline; arranging for medical appointments; managing a medication schedule. Name: _____________.
- Financial affairs tasks: Paying bills; keeping track of financial records; managing assets; obtaining powers of attorney. Name: _____________.
- Transportation tasks: Driving decisions; coordinating rides; locating transport services. Name:_____________.
- Communications tasks: Daily check-ins; keeping others on the team informed; coordinating team visits. Name: _____________.
- Socialization tasks: Arranging for visitors; arranging for outings. Name: _____________.
- Adaptive device tasks: Finding wheelchairs, walkers, hearing aids, etc. Name: _____________.
Once you have a draft of your plan completed that includes a list of activities and who’ll do what, call a second meeting (virtually if necessary) to review the evolving plan details with the entire team—including your elderly loved ones—and to secure commitments.
If you’ve followed all of the earlier steps, your plan should now incorporate the thinking and perspectives of everyone involved. But since there’s always a chance for a misunderstanding, use this meeting to circle back on aspects of the plan that might be causing discomfort for some.
Above all, stay flexible, and recognize that the plan will probably have to change at some point. The end result of your deliberations should be a written plan that commits everyone on your team to a specific set of tasks. Ideally, your document now reflects the collective goodwill and love you and your family feel for your aging parents. Congratulations: You’ve got a plan!
Third, Overcoming Resistance (If Necessary)
What should you do if some family members don’t want to join the caregiving plan discussion or seem non-committal? What if some family members seem in denial about your loved one’s future health issues? How should you respond if long simmering family issues suddenly flare up, derailing the consensus you’ve tried to build?
If you experience resistance, the first thing you should do is step back and examine your expectations. A recent article from the Caregivers Alliance provided a trio of tips to help deal with reluctant siblings:
Avoid making your siblings feel guilty
Guilt makes people feel uncomfortable and defensive, which in turn can prompt them to get angry at you, or criticize what you’re trying to do. Then you’ll get angry again—round and round it goes. If siblings are voicing critical opinions, try to listen to their concerns without judgment. Take it as useful feedback. Say ‘thank you’ if someone offered a helpful suggestion. Be careful of your tone and your language. It’s not always easy for us to hear the way we sound to others.1
Try to accept your siblings, and your parents, as they really are, not who you wish they were
You may think you know your siblings well, but long-simmering attitudes and unsettled resentments may be getting in the way of true cooperation. Recognize that your family members, while less than perfect human beings, are not “bad” just because they might disagree with you.1
Get help from an outside professional
Even the healthiest families can sometimes use the help of an objective third party. Family therapists, social workers, geriatric care managers, physicians or clergy can often help family members stay focused on the topic at hand and help you avoid bringing up old arguments.1
If tension and disagreements are starting to get out of hand, try calling a time-out to allow a cooling-off period. If necessary, reschedule the meeting. Remind everyone—again—what’s at stake.
Creating a Family Caregiving Plan Is Worth All the Work
Pulling together a family caregiving plan may sound like hard work. All the planning, the organizing, the priority-setting and the inevitable gentle persuasion and recruiting of other fence-sitting family members. Is it really worth all that effort, especially given the fact that mom and dad seem the perfect picture of health today?
If you start to have doubts about the necessity of creating a caregiving plan, remember these key points:
- Many families get caught off-guard if parents have a health incident.
- Then, in the blink of an eye, lots of caregiving is needed, and families are forced to scramble to meet their loved ones’ needs.
- In this worst-case scenario, expect: family conflict, the prospect that one person will be forced to “do it all,” and, potentially, a chaotic scramble that fails to serve your loved ones’ needs.
You can avoid the potential heartache and the “what-if” questions by committing to a family caregiving plan.
Source: Must-Know Statistics About Long-Term Care: 2019 Edition, Morningstar, 11/25/19