Top Family Caregiver Mistakes: Part 4, Not Involving Family Members in Caring For Your Loved One

Hope Hospice is publishing a five-part monthly series about common family caregiver mistakes. Following is Part 4. This series is written by Debbie Emerson, MS, Hope Hospice Community Health Educator.

Revisit Part 1: Not Planning in Advance  

Revisit Part 1.5: Not Having Healthcare, Financial, and Legal Affairs in Order

Revisit Part 2: Not Hiring In-Home Help

Revisit Part 3: Not Having a Support System

Mistake #4: Not Involving Family Members in Caring For Your Loved One

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. Communicate with everyone, every step of the way. 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.

The care of your loved one should be priority one

The shared caregiving experience in which your loved one’s needs become the top priority can make your family unit stronger. When you are able to accept and respect differing perspectives and put aside the rivalries and grievances from the past, you’ll be able to view your family members as allies, not adversaries.

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.

Important note:  With the COVID-19 pandemic continuing to impact our lives, it’s important that everyone takes precautions to keep vulnerable individuals as safe as possible. Please follow all of the CDC guidelines regarding interaction with the elderly and those with preexisting conditions. You might also enjoy watching the recording of our webinar, Caregiving in the COVID Era.

Resources

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