The 5 Biggest Myths about Family Caregiving (And How They Will Impact You)
If you think your family members are willing or able to care for you, you might be surprised at the reality. There are many myths about being a family caregiver, and today we're going to talk about the biggest ones.
We all want to believe that if we’re in a situation where we can’t care for ourselves, that relatives and loved ones will step right up. Fortunately, for many of us, this is what happens.
But, what happens if you are living alone, at a distance from family, or you’ve not spoken for weeks, months, or years? You could find yourself in more distress than what your illness or injury has created.
We all need to consider having conversations about who could help, no matter our ages. So often, we don’t know where to begin or when it’s appropriate to have the conversation. I believe it’s never too soon.
In today’s post, I’m going to share a few statistics about caregiving, what we need to know about having the proper documents in place, how to share your values and wishes, identifying who can help and in what roles, and how to ask for what we need–both as caregivers and those needing care.
What are the biggest family caregiving myths?
The biggest myths are that:
Family members are the best prepared to be caregivers.
We all have the same values about caregiving.
Everyone wants to be a caregiver.
Insurance will cover all of the caregiving costs.
We know what we need and how to ask for it.
I had the pleasure of discussing these 5 myths and more with oncologist Dr. Richard Deming, MD (mercyone.org).
Click the video below to watch, or keep reading for the essentials.
Family Caregiving Myth #1: Family members are the best prepared to be caregivers.
We often believe that our family members are ready, willing, and can be caregivers for us or someone close. Yet, whether they are families of kin or choice, family caregivers weave into the fabric of our society.
Multigenerational households were typical a century ago, and members often lived in the same or nearby communities. Having proximity made it relatively easy for many family caregivers to participate in caregiving responsibilities and support caregivers.
In May 2020, AARP and the National Alliance for Caregiving released estimates of the number of adults identified as caregivers. In 2015 those numbers were 43.5, climbing to 53 million in 2020 with 24 percent caring for two or more recipients. (Note, these numbers emerged at the beginning of the Covid-19 pandemic and do not include pandemic caregiving.)
The number of family caregivers is staggering, and often we don’t stop to consider if we are caregiving. Instead, we fold the needs of others into our lives and routines whether or not we’re ready, feel capable, or have had any discussion of expectations.
As family and friends, we can aspire to be good caregivers. However, caregivers are finding and reporting that care recipients have more significant health and functional needs than was reported in 2015.
An aging population, increasing emotional and mental health issues, and complex diagnoses such as Alzheimer’s disease or other dementia can leave a caregiver overwhelmed and at risk for their health concerns. In addition, a decrease in accessible or affordable community-based services and resources also places a caregiver at risk.
If you are a caregiver for a spouse, parent, grandparent, or friend, assessing your capacity, capabilities, and which caregiver support services you may need is essential to consider before committing to what can be a long-term situation.
Family Caregiving Myth #2: We all have the same values about caregiving.
Have you ever observed a friend or family member in a health-related situation and thought, “I would do what they are doing!” Or, you’ve held an alternate viewpoint and felt, “I would never choose to do that.”
One reason is that so many variables create complexity in caregiving situations, and often the primary family caregiver has the burden of making decisions and receiving all the criticism.
In addition, sometimes caregiving needs can change within a matter of days or hours. Therefore, having conversations and creating documents that designate who can make decisions are necessities.
Creating documents and having digital copies allows caregivers to demonstrate their capacity to act on behalf of their care recipient. They may disagree with the choices of the care recipient, such as life-prolonging actions, but it also protects the values, preferences, and will of the care recipient.
In addition, caregivers (especially the primary caregiver) often feel guilty about the action they “should” take and feel responsible for the outcomes. Having clarity between the care recipient, primary caregiver, supporting caregivers, and medical staff can alleviate the distress or guilt.
With a shift in health care to community-based settings instead of long-term care, caregivers often fill in the gaps. Only 29 percent of caregivers reported having conversations with health care professionals about what they need to care for their recipient or support their well-being. When caregivers navigate complex health systems or find affordable services, they become overwhelmed.
Family Caregiving Myth #3: Everyone wants to be a caregiver.
Caregiving may be an anticipated event as a result of planning and conversations. At other times, it’s a surprise event following an accident or sudden illness. While 48 million adults are caregivers, another 3-4 million are under 18.
One in four caregivers acknowledge that it is hard to take care of their health, and they find it challenging to plan for their futures. Economic strains include working, earning, and saving less.
Fifty-one percent of caregivers report that caregiving gives them purpose and a sense of meaning. The Gerontologist (2018) references several longitudinal studies that have attempted to understand how focusing on the positive can help caregivers stay healthy and provide better care.
Positive aspects of caregiving can include increased compassion, personal growth, gratitude, and mastery. When people have a positive feeling about caregiving, they experience less depression and anxiety.
However, most studies report no benefit to physical health. They suggest more studies to understand how increased resources could encourage caregivers to focus on the positive aspects.
Not all caregiving is local or involves our direct physical care. We continue to be caregivers locally or through long-distance caregiving, as we make decisions, pay bills, and arrange care.
Caregiving includes having a care recipient in a long-term care facility. Relationships within families and others are layered and often have unspoken dynamics that should not automatically assume caregiving is desired by or for an individual.
Everyone involved, including the care recipient, potential caregivers, and health care team members, should not accept that a next-of-kin is the best caregiver in a situation. Asking questions and assessing preferences and capabilities are critical components of careful preparation and, ultimately, the well-being of everyone involved.
Family Caregiving Myth #4: Insurance will cover everything.
Insurance is a significant variable in the coverage of services and resources in the United States.
Every plan, Medicare, Medicaid, and private insurances vary in their benefits. Too often, we make assumptions about coverage for hospitalizations, therapies, long-term care, and in-home services.
Coordination of care often falls to the caregiver, who spends a significant portion of time and energy creating a plan across various provider services. Any change in the intensity of care needs can upend a carefully crafted safety and support plan.
Whether you have had time to prepare for caregiving or it’s a sudden event, gathering information about the type of insurance available is a beginning step.
Insurance typically covers a certain amount of inpatient hospital care. It can also cover some skilled care level long-term care in a facility or at home. The key is the assessment of criteria to meet professional-level support.
One in five caregivers reports high financial strain, and four in ten have experienced at least one economic impact due to their caregiving.
Families, friends, and care recipients can bear the responsibility of out-of-pocket costs for many facets of care, including wound care, toileting supplies, and more.
Again, this is a place for conversations to see how support can occur. For those unable to provide directly for care, offering to supplement the economics is one way to participate.
Family Caregiving Myth #5: We know what we need and how to ask for it.
Have any of the other myths raised questions for you about how to prepare for becoming a caregiver?
While you can enter into this whole-heartedly and with energy, you’ll likely find times when you’re not sure what you need or where to find it. Many caregivers also find it hard to ask for help.
The Caregiving in the U.S. 2020 Executive Summary identified several areas caregivers felt would support their work.
Respite care was one area they believed would be helpful, though actual use of services remains low. Just 14 percent report having used respite, though 38 percent thought it would be beneficial.
Other areas identified as important include:
information and support to keep their care recipient safe at home (26 percent),
Managing caregiver stress (26 percent),
Navigating forms, paperwork, and eligibility for services (25 percent), and
Income-tax credit (68 percent)
or paying caregivers to provide care ( 65 percent) would be helpful to defray the costs associated with care.
Technology is another support for caregivers, but only 53 percent of caregivers report using software or other tools to help them, most commonly tracking their care recipient’s finances.
An increase in free apps explicitly designed to support caregiver communication and conveying needs to their group is one way to identify and respond to caregiver needs.
In summary
I hope you’re not overwhelmed or wanting to run for the door as you contemplate being or needing a caregiver. Or, you find yourself amid caregiving and can relate to the issues and statistics.
The numbers are impressive, considering we don’t always hear much about caregiving. However, I’m guessing you know of someone or a relatable situation.
I want you to know that caregiving is part of our lives.
As former First Lady Rosalynn Carter said, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
When we consider caregiving, it’s vital to think about “Who, What, When, Where, and Why?”
Who would you choose to be your caregiver?
Who would you/do you care for? Where is care occurring?
What situations would require care, and when would it begin?
What information completing, where is it stored, and who is in charge?
Where are you located? If you're not local, is long-distance caregiving a viable option?
These are a few questions to be considered, answered, and adapted as caregiving occurs. We don’t like to view our vulnerabilities as human beings, but we can all become ill, have an accident, or require support as we age.
As you can see, millions of Americans are engaged in caregiving. Moreover, these numbers are replicated around the world.
In my conversations with caregivers outside of the U.S., I find the situations are similar, the worries are consistent, and resources are always needed.
The level and complexity of care are variable in all situations. Long periods of stability can shift, and the need to make decisions quickly occurs.
Understanding the values and preferences of everyone involved makes it easier to make those decisions. Having conversations is sometimes tricky but can be achieved with support.
Caregiving is not only for elder care but occurs at every level of age and society. Resources vary, and developing a willingness to use them is one way caregivers can preserve their health, well-being, and financial stability.
Caregiving can be rewarding at many levels. It allows for connection with others, personal growth, meaning, and a sense of perspective and gratitude.
Caregivers master skills and situations in which they have no formal training. Yet, they learn and adapt their lives to those they care for to have the best possible outcomes.
Do you see yourself in any of these situations? Did any of these myths surprise you? Is there one you would add to the list?
As we can see, caregiving occurs at all life cycle stages. With tens of millions of caregivers in the U.S., we need to find ways to support people as they live, work, and balance the needs of others. Education, training, and creating connections between caregivers are some of the ways we can enhance your quality of life.
If you’d like to know more or connect with other caregivers, please join my private Circles of Caregiving group on Facebook. Also, visit my blog for more information and www.caregivingconnection.net to be the first to know about upcoming webinars, free resources, and services designed for family caregivers.
"What does a family caregiver do?" and other FAQs
What does a family caregiver do?
Family caregivers take on several responsibilities and roles. Caregivers often provide help in the home and oversee decisions for someone in a care facility. Caregiving can involve bill paying, making healthcare, legal, and financial decisions, and coordinating supportive services.
Caregiving can take place long-distance. Becoming familiar with community resources helps a caregiver as changes occur and planning requires adaptation.
What does it mean to be a family caregiver?
Family caregivers provide essential support and services to family members, friends, coworkers, and neighbors. The term identifies someone who is trusted and capable of helping someone whose health, aging, or circumstances requires them to depend on others to get their needs met.
Does Medicare pay for family members to be a caregiver?
Medicare does not pay for family members to be caregivers. Medicare covers hospitalizations, skilled care (if deemed necessary and for a limited time), and other medically related services.
Some states have provisions to pay family members for in-home health care. This is not widely available across the US.
Why is family caregiving important?
Family caregiving is one of the most important aspects of our healthcare system. It’s not always widely recognized or reimbursed. Family caregivers provide billions of dollars worth of care each year to family and friends.
Having trusted family and friends offering physical, emotional, mental, and spiritual support creates hope in the life of someone who is more vulnerable. Advocating for the dignity and values of someone you care about can also enhance your life as well.
Do I need caregiver training?
I believe all caregivers need and deserve training for the care they offer others. Training can include workshops that offer information about becoming a Power of Attorney, assessing the safety of the home environment, modifications, and ways to maintain the safety of the caregiver and care recipient.
Whenever possible, a caregiver should ask for information about medical treatments taking place outside of a healthcare environment, medication management, side-effects, and what to do in an emergency.
Learning how to create a family emergency plan, effective communication skills, and stress management enhance the caregiving experience.
What's the best way of supporting family caregivers?
Many family caregivers have found support through caregiver support groups, and disease-related groups. Finding a family caregiver program in your community can be difficult as they are not as available as programs for patients. However, this is changing. There are also online family caregiver groups as well as caregiver education programs.
Caregiving can be a challenging time.
Grab my “Getting Your Docs In A Row” checklist to help you prepare to care.