Caregiving Best Practices: Develop a Support System

By Debbie Emerson

Starr Hospice Community Health Educator

I’m the only one my husband trusts to provide care.

My family is scattered all over the country — how can they help with care when they’re so far away?

No one else can possibly understand what I’m going through.

My siblings can’t help me care for our father, but they’re the first to criticize what I’m doing.

I don’t trust anyone else to provide care for my mother — they may not do things the way I’d like; I’ll just have to fix the mistakes they make, so I might as well do it myself.

I’ve often heard these statements and others like them from family caregivers. Without a doubt, one of the most challenging aspects of providing care to a loved one is trying to work together with family members. The demands of caregiving can be staggering, but when you include the bickering and disagreements that tend to surface when family members interact, the task can be overwhelming.

When I was caring for my elderly mother in the last few years of her life, I created the false narrative that her care was my sole responsibility. Big mistake! In so doing, I found that not only did I assume an excessive amount of responsibility that would ultimately impact my own health, but there were two other critical factors that I failed to consider:  (1) I was depriving Mom of receiving care from other family members and benefiting from their unique abilities and companionship; and (2) I was denying family members the opportunity to create positive memories and strengthen their relationship with Mom at the end of her life.

It took me awhile to realize that the key to successful caregiving was putting aside our differences and working together as a family unit to provide quality care for our loved ones.

Lessons Learned

I’d like to share with you some of the lessons I’ve learned about optimizing family cooperation in the care of a loved one.

1. When one person establishes herself as the primary caregiver, family members may assume that their help isn’t needed or wanted. So, as primary caregivers, we need to ASK for help when we need it — we can’t expect others to be mind-readers or anticipate our needs. Establish from the beginning that everyone’s help is necessary to best meet the needs of your loved one. And, remember that it is important to steer clear of the cycle of guilt and anger when asking for help.
2. Discuss and establish roles and responsibilities. Be willing to compromise. Avoid exclusive alliances; don’t ignore difficult family members. Document, document, document—having a written record of all information and communication relating to the care of your loved one will serve you well.
3. Coordinating care can be cumbersome. Since each person on your team may have his/her own system of task management, it’s important to find a simple organizational strategy or tool that everyone feels comfortable using. There are many good computer apps that can make coordination and communication easier, but if members of your team are not computer literate, you may need to use some of the more traditional strategies such as files and notebooks. Whatever tool you use, just be sure that everyone on the team is committed to using it.
4. Everyone responds differently to caring for an elderly or chronically ill loved one, especially if the there is a dementia diagnosis. It’s not uncommon for many to react with denial, discomfort, and/or withdrawal when faced with interacting with one who is in failing health. When asking for help, we need to be sensitive to what others are able to handle. Some family members are best suited to contributing in areas that don’t require direct care.
5. Our expectations need to be realistic. We may expect that other family members demonstrate the same type of commitment that we have. This distorted belief can lead us to judge, and judging destroys relationships. Instead, focus on what type of help other family members are willing and able to provide — it can range from handling complex financial or medical situations to providing emotional support and companionship.
6. It’s important to recognize family members for who they are, not who we want them to be. Our baggage from childhood doesn’t just neatly disappear in adulthood; the family dynamic from years ago has a way of seeping into adult interactions. And, now that many families include stepchildren, half-siblings, former spouses, etc., interactions can be even more complex. The key to success is to always focus on what’s best for the loved one who needs care and avoid power struggles. Most important, try not to let inheritance disputes tear your family apart.
7. Providing care for an elderly loved one is full of joys and sorrows. When your family is able to work cooperatively as a team with a common goal, everyone benefits:  Your loved one will get the best care possible; as the primary caregiver, your role will be more manageable; and your family members will be able to experience the satisfaction and personal fulfillment that comes with caring for another. And, after your loved one has passed, hopefully this family bond will continue to grow as you support each other during the grieving and healing process and beyond.

Asking for Help

How many times have you heard friends say, Please let me know what I can do to help. And your usual response? Thank you, I’ll let you know. But then you don’t follow up. For a variety of reasons. So, the next time someone asks what they can do to help you, be ready to answer specifically.

Prepare in advance a written list of ways people can help you. Then, when someone asks, share the list with them and let them choose what they’re able to do. That way, you’ll get exactly the help you need and you’ll save your friends the dilemma of trying to figure out the best way to help you. It’s a win-win!

Asking for help can be overwhelming, especially when you’re trying to juggle all of the tasks that come with caring for a loved one. As I mentioned, you first need to figure out what kind of help you need. That can range from a simple phone call to check in, to actually having someone stay with your loved one while you run errands or take a much-needed break. At the end of this article is a worksheet that can help you get started.

If you feel uncomfortable requesting help, ask a trusted friend or family member to be your care coordinator.  When someone asks what they can do to help you, say, Call my friend Julie — she’s been helping me coordinate and schedule my helpers.

Or, if you’d prefer, you can enlist the help of one of the many online apps that enable you to request and accept offers of help from your friends, family, and neighbors. You are in complete control of determining what kind of help you need, when you need it, and who has access to the site. Here are a few to check out:

CaringBridge.org

LotsaHelpingHands.com

CaringVillage.com

Check with local schools and scouting organizations, as students and scouts are engaged in community service projects. Check to see if there are any responsible young people in your community who can help with some of your household tasks like yard work and simple errands.

Senior Centers have a wealth of free resources and services designed not only for senior citizens, but also for those who care for them. Just run a Google search on the phrase: “senior center + [the name of your city]” to find the organization in your community.

Additional Resources

Starr Hospice’s Family Caregiver Education Series

Caregiving with Your Siblings, Family Caregiver Alliance

Holding a Family Meeting, Family Caregiver Alliance

Easing Age-Based Sibling Rivalry in Caregiving, AARP

Long-Distance Caregiving, National Institute on Aging/National Institutes of Health