The Cost of Being a Family Caregiver

Caregiving.com

The Cost of Being a Family Caregiver

Caregiving.com

The family caregiving community is vast, yet we often only learn about it when we become one ourselves. A caregiving experience may start with finding a place for mom in your home and helping her as best you can when she can no longer live by herself. Most often, family caregivers are “winging it” and run into challenges along the way, not knowing what to expect or how long they will need to support their loved one in full capacity.

Caregiving is usually not short-term. On average, the duration of caregiving is four-and-a-half years1 with three out of ten caregivers providing care for five years or longer--a number that has grown since 2015, the last time this AARP/National Alliance for Caregiving study was published. With this much time in a caregiving role, you’ll likely confront challenges that you never anticipated. The cost of being a family caregiver is not strictly the depletion of your time. Without a national strategy in place for family caregivers, there are emotional, physical, and financial costs to caregiving that you are likely to experience. Read on to learn more about these hidden costs of being a family caregiver.

The Emotional and Physical Costs of Family Caregiving

Caregiving is a job, although most family caregivers are not paid for their work. On average, family caregivers provide 24 hours of unpaid care work each week.2 That’s part-time work! On top of other responsibilities (employment, housekeeping, errands, etc.), taking care of someone else can strain a person’s emotional and physical wellbeing. 

Family caregivers answer the call to caregiving 24/7. Take, for example, the dementia caregiver who checks on a loved one in the middle of the night after being startled awake by their floor-sensor alert. Whenever their loved one needs them, the caregiver is there. An analysis shows up to 76 percent of caregivers report poor sleep quality3 with symptoms such as depression, fatigue, and anxiety associated with these sleep interruptions. Many family caregivers are also providing care while enduring chronic pain themselves. A survey of 46 informal caregivers4 revealed 94 percent experienced musculoskeletal pain in at least one body part with 78 percent of them saying the pain impacted their ability to provide care. Poor health outcomes for family caregivers are on the rise5 and will continue to do so without adequate support to address and mitigate the caregiving crisis.

The Financial Costs of Family Caregiving

When financial safety nets, such as Medicaid and long-term care insurance, don’t cover all care-related costs, family caregivers often make-up the balances that remain. A 2016 AARP study revealed that more than 75 percent of caregivers are paying these out-of-pocket costs with an estimated $7,000 spent on caregiver-related costs per year.6 Especially for those with low-income, this can put additional strain on the primary family caregiver. Some of these costs include home renovations to improve accessibility, drug prescriptions, toiletries, transportation, groceries, home care, and more. Even the small costs add up, especially when care needs are either prolonged or ongoing.

Often family caregivers are placed in the difficult position of choosing employment or caregiving, and sometimes do both. Studies show women age 50 and older who leave their employment to care for a parent lose, on average, nearly $324,000 in wages and benefits over their lifetime.7 For millennial caregivers, the rate of employment while caring for an ill or aging family member is nearly 73 percent.8 These work-related consequences are damaging to the careers and financial health of family caregivers, with many opting for bankruptcy. As our population continues to age into older adulthood, insufficient compensation for family caregivers and inflexible paid time-off policies are clearly not sustainable.

The Costs of Caregiving on Family Dynamics

Caregiving can create tension among family members in many ways. For the primary family caregiver, it can be easy to resort to “why me?”. That mentality can cause feelings of frustration and anger toward other family members who are far away and can’t help as much to manifest. Other situations that can create strain among family members include disagreements between siblings9 over care duties and roles and having difficult conversations about care with an aging parent

When a loved one does not have an advance directive or plans for their healthcare in place, this makes it more difficult for families to agree on the care plan for their loved one when they can no longer make healthcare decisions for themselves. An estimated two out of three U.S. adults do not have an advance directive completed.10 When these decisions are in place, it leaves less room for disputes because families and providers have details such as who will be the healthcare power of attorney, when to use a DNR form, when to call hospice, where care will be provided, terms in the will, and more.

6 Ways to Offset the Costs of Family Caregiving

While it is overwhelming to either consider or endure the financial, emotional, and physical costs of family caregiving, there are ways to reduce their impact.

  • Build your community. Look for caregiving support groups in your area to talk with other caregivers. Being heard and having people who understand your situation reminds you that you’re not alone. This kind of support can also help make your caregiving journey easier.
  • Reach out to friends and family. Asking for help can be difficult, but try starting with a conversation about how you’ve been. You may be surprised by what you hear when you open up. The ones closest to you want to help and show their support.
  • Check-in with yourself. Whenever you have a moment to yourself--however brief--check in. How’s your heart? What’s on your mind, and how are you feeling? It’s important to take time to name your feelings and assess your reactions. Conducting these mental health check-ins with regularity can also help you recognize when you are experiencing caregiver burnout.
  • Get organized. There is often so much information to track about a loved one’s care. Pulling their financial, medical, and other important documents into one place can make this aspect of caregiving a little bit easier. Here’s how you can get organized with a caregiver binder.
  • Take action. There’s only so much you can take on as an unpaid caregiver. Support for the caregiving crisis is needed at the national level. Send your senators an invoice of your unpaid caregiver salary to encourage more financial support for family caregivers.
  • Download Carely (or other family caregiving apps). To keep your family on the same page about a loved one’s care, download the free Carely Family app. This caregiving app keeps everyone up-to-date through direct and group messaging and tracking appointments and visits in a shared calendar. 

The Hidden Bonuses of Family Caregiving

While caregiving is a tremendous and loving sacrifice, there are also hidden bonuses that can be easy to overlook on a tiring, busy day. Don’t forget to take time to reflect on the beautiful moments that are unique to being a family caregiver.

  • Experiencing tender moments. Realizing your loved one trusts you to see them in vulnerable, tender moments--like helping wash their hair or shave their face--is love in its purest form. You’ll remember the feeling of connecting this way for years to come. 
  • Building empathy. The longer you care for your loved one, the more you learn about what makes them uncomfortable, what hurts, and when they need something by a simple expression on their face. It is a gift to understand someone this intimately. You set an example for the rest of the world when empathy is lacking.
  • Learning new things about your loved one. While caring for your loved one and learning their healthcare wishes, you may pick-up new information about their life. You may hear stories you never knew if you hadn’t had this time with them.
  • Learning new things about yourself. During your caregiving journey, you will learn new skills like administering medicine, budgeting, and finding the right words to comfort your loved one. You may also learn that your capacity to love and care is greater than you thought given the numerous ways you support your loved one. 

For more on the benefits of caregiving, read Why You Should Be A Caregiver.

References

  1. Caregiving in the U.S., AARP & National Alliance for Caregiving (2020)
  2. Ibid.
  3. How Adult Caregiving Impacts Sleep: a Systematic Review, National Center for Biotechnology Information (2016)
  4. Informal Caregivers at Risk for Chronic Pain, Injury, Social Work Today (2014)
  5. Caregiving in the U.S., AARP & National Alliance for Caregiving (2020)
  6. Family Caregivers Cost Survey: What They Spend & What They Sacrifice, AARP (2016)
  7. The MetLife Study of Caregiving Costs to Working Caregivers, MetLife & National Alliance for Caregiving (2011)
  8. The Dual Pressures of Family Caregiving and Employment, AARP (2016)
  9. Caregiving With Siblings: Resolving Issues While Caring for Parents, AgingCare (2021)
  10. Two out of three U.S. adults have not completed an advance directive, ScienceDaily (2017)


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