Even when family caregivers have access to help, many still come up with excuses to turn down assistance. Opening up to the possibility of accepting support ensures you can have a life apart from the needs of your care receiver.
Throughout my years of experience providing care for aging loved ones, I’ve encountered a variety of reasons why caregivers deny the need for outside help. Ultimately, family caregivers must acknowledge and work through their motivations for wanting to be an elder’s sole care provider. Caregivers often endure high stress levels (especially those with little or no support) and many eventually become burned out—a condition that should not be taken lightly. Although it can be difficult, accepting and seeking out help prevents burnout and benefits both caregivers and care recipients.
Reasons Why Some Family Caregivers Don’t Accept Help
Protective InstinctsWhile many caregivers come to terms with the fact that we can’t make our loved ones completely healthy and/or independent again, we still want to be the person who cares for them and safeguards their well-being. This protective instinct is powerful and hard to overcome for many informal caregivers.
Caregiver GuiltIt is common for feelings of guilt to pop up throughout one’s caregiving journey, even though they are usually undeserved. To make matters worse, guilt-trips are often self-imposed. Caregivers may feel that their position as a spouse, an adult child or even a parent requires them to see to all of their loved one’s needs personally. Deserved or not, guilt is nearly always a useless and destructive emotion, yet it’s a common problem for caregivers who are so invested in their loved ones’ health and happiness.
An Unhealthy Sense of CompetitionAdult children who are caring for their aging parents may still be trying to earn recognition as the son or daughter who did “the most.” Sibling rivalry, even in healthy families, seldom disappears completely. Many caregivers fight to get their family members to participate but keep getting denied. For these people, sibling rivalry isn’t necessarily the issue at hand. I recognize that the bulk of elder care, even in large families, frequently falls to one person—most often the eldest daughter. However, there are caregivers who shut out other family members who want to be involved and offer assistance. Most likely, they subconsciously want to be the family hero. I’ve heard from enough shut-out siblings to know that this touchy subject does need to be addressed.
Fear of StrangersWe often do not trust hired caregivers, whether they are providing care in the home, an assisted living community or a skilled nursing facility. We’ve heard horror stories and may even personally know others who have had terrible experiences with home health aides, nurses or companions. We care about our loved ones and have a duty to protect them, so we fear what may happen if we are not present to monitor their care at all times.
A Desire for PrivacySome people simply lead more private lives by default. They treat their homes as their safe spaces and consider family happenings to be extremely personal. Whether help is coming from a hired caregiver, a fellow churchgoer, a neighbor or a sibling, many caregivers are simply uncomfortable with the idea of opening up their homes and sharing sensitive information—whether it’s about themselves or an elder—with “outsiders.”
Financial ChallengesLong-term care costs seriously limit the options that many families have when it comes to finding quality elder care. According to Genworth’s Cost of Care Survey 2020, the median hourly cost of a home health aide is $24, while the median monthly cost of a room in an assisted living facility is $4,300.
The American health care system still lacks the widespread features and supports that enable seniors and individuals with disabilities to continue living in their homes safely. There are some programs offered through the VA, Medicare and Medicaid, but coverage is minimal and most people do not qualify. Meanwhile, whatever assets our parents have must be used for their care. When their money is spent down, they can generally apply for Medicaid, but the quality of this care may not be what we would have chosen otherwise. Therefore, many families see to the bulk of the responsibilities themselves to avoid spending money on long-term care, but this can be detrimental in many other ways.
How Caregivers Can Learn to Accept Help
Seek Objective AdviceWe may need counseling from a trusted third party, such as a therapist or clergy member, to help us understand that we should not be expected to provide all of the care for an elderly loved one all of the time. It can be destructive for the caregiver and, in the end, detrimental to the care receiver. Caregivers need regular respite so they can provide the best possible care over the long term.
Get Caregiver Support from Your PeersAlthough insight from an outsider is valuable, nobody understands the inner workings of caregiving like fellow caregivers. A caregiver support group, either in person or online, is an excellent resource for those who are looking to connect with people in similar situations. The AgingCare online Caregiver Forum is a great place to start gathering tips, information and support from others who have been in your shoes.
Live in the PresentOngoing guilt is useless. It is better to work proactively with your current reality than to wallow in the past about what might have been. We do all we can to help our loved ones, and looking back repeatedly will only cloud our judgement and prevent us from moving forward.
Practice AcceptanceIf you have requested help from siblings time and again, but they only give excuses, or well-meaning friends and neighbors never make good on their offers, accept that they cannot be relied upon. It is your job to ensure that your loved one receives the best possible care. If someone is hardly interested or involved in their life and care plan, do you really trust them to take on any of your responsibilities? It is up to us to accept the difficult reality of the situation and look elsewhere for the help we need and deserve.
Carefully Research and Vet Care ProvidersWhile there are some professional caregivers who are simply average, many of them are incredibly kind and attentive to the seniors in their care. To prevent issues early on, do your homework before hiring a home care company or selecting a senior living facility. Make your presence and attentiveness known without acting like you’re an adversary. You and the professional caregivers are on the same care team. If you’ve found a good fit, you will be able to relax and enjoy having them take on more responsibilities so that you are free to engage in your own self-care and spend quality time with your loved one as their family member instead of their caregiver.
Make the Most of Government Programs, Benefits and Other ResourcesFinancial issues will be ongoing until we have proper, widespread support for seniors and their family caregivers. We can and should pressure law makers to do more to help caregivers, but that won’t change much for those who need assistance now. Learn as much as you can about Medicare, Medicaid, veterans benefits, long-term care insurance, and any other options that can help fund a loved one’s care or minimize costs in other areas. The Benefit Finder tool on Benefits.gov is an excellent source of information on federal, state and local programs from across different federal agencies. You may want to consult an elder law attorney, your local Area Agency on Aging and/or a financial planner to go over your loved one’s financial situation and guide you through next steps.
With or without help, you remain a caregiver. Even when a senior lives in a nursing home, their primary caregiver still has many responsibilities and is on call 24/7. It can be difficult, but opening up to the possibility of outside assistance is the first step towards ensuring you can have a life apart from the constant needs of your care receiver.