Family Caregiving: How The Whole Family Can Help Care For Heart Kids

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Being a family caregiver for a child with a heart condition can seem like a lot for a parent to take on. But moms and dads aren’t the only family members who can help out.

In honor of National Family Caregivers Month, here’s a look at how everyone can take part in family caregiving for heart kids. 

Planning Family Caregiving

Family caregiving is a team effort that requires clear communication, explains the American Heart Association (AHA). One way to make sure everyone is on the same page is to discuss issues during regular family meetings.

During these meetings you’ll want to:

1. Determine What Needs To Be Done.

It may help to start by drawing up a list of everything that needs to be done, including what each task entails and how frequently it needs to be completed.

2. Play To Family Members’ Strengths.

Think about what each member of your family excels at, and use everyone’s strengths as a guide when dividing up responsibilities.

For example, if you’re a pro at keeping the family’s finances in order and your partner is great at motivating your heart kid to take his medicines, then you may want to tackle the medical bills while your partner assists with your child’s medical care.

3. Don’t Force Anyone To Do Anything They Don’t Want To Do.

Every family has its own unique dynamic and history, which can make navigating family caregiving a challenge at times, says the AHA.

Some family members may be more willing or able to help in caregiving than others. It’s important to not pressure anyone to take on any tasks or responsibilities they do not feel up to.

Forcing someone to do something they don’t want to do may only lead to tension and resentment.


How The Whole Family Can Take Part In Caregiving

Once you all have an idea of what needs to be done, it’s time to start dividing up family caregiving responsibilities.

Providing Care

Heart kids—especially those who are post-transplant—often have medication regimens that need to be maintained regularly to keep them healthy.

That means this is a job best suited for someone with patience, attention to detail, and the ability to stick to a schedule.

Managing Finances

Managing finances as a family caregiver goes beyond just making sure medical bills are paid on time. For instance, if your family lives far from the hospital where your heart kid gets treatment, chances are you also have to consider the costs of food, transportation, and lodging as well.

Having someone in charge of monitoring expenses and making a big-picture budget can help keep your family’s finances in order.

Coordinating Schedules

As a parent of a heart kid, you or your partner—or both—may be working full time. If your heart kid has siblings, they’ll also have schedules of their own.

Coordinating appointments, activities, errands, and any other events can require some creative thinking to make sure everyone gets where they need to be.

Updating Family And Friends

When loved ones want to know how your heart kid is doing, a social media savvy older sibling can help keep family and friends up to date—especially if you have a Facebook page or other website set up just for that purpose.

They can also help keep everyone in the loop by sending out regular email updates.

Be sure to review any updates prior to posting and sending to make sure they’re appropriate. And always check the privacy settings to ensure that only the people you want are viewing the information.

Also read: Heart Transplant and Social Media: Are You Sharing Too Much?

Planning And Cooking Meals

If an older sibling likes cooking, he can help with meal planning and preparing food—under adult supervision, of course.

This is a task that extended family members who are interested in lending a hand can help with as well. A few meals that can be prepared ahead of time and frozen until needed go a long way.

Keeping An Eye On Siblings

Another way that interested aunts, uncles, and grandparents can help is by watching your heart kid’s siblings while you’re out at appointments.

Planning Family Fun

Everyone involved in family caregiving can take turns planning family fun times. These may be simple activities at home, or excursions to the local park or movie theater for an afternoon of entertainment.

It’s important to relax and take a break every once in awhile—even if fun time has to be scheduled in advance.


Sean Akers

Hi, I’m Dr. Sean Akers, and I’m a Licensed Clinical Pediatric Psychologist at Children’s Hospital & Medical Center in Omaha. I serve as the primary psychologist for the heart transplant team as well as the coordinator of the Consult Liaison Service. My job is to provide heart kids and their families with support throughout their journey.

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