Caregivers frequently feel stressed and many eventually become burned out—a condition that should not be taken lightly. Many caregivers, even when they have access to outside resources, still come up with excuses to actively refuse assistance. Throughout my years of experience providing care for loved ones, I’ve encountered a variety of reasons why caregivers deny the need for help. Ultimately, family caregivers should understand and work through their motivations to be the sole care provider. Accepting help benefits both the caregiver the care recipient.
Reasons Why Caregivers Say “No” to Help
- The Instinct to Protect
While many caregivers come to terms with the fact that we can't make our loved ones completely healthy again, we still want to be the person who provides care and safeguards their wellbeing. This protective instinct is powerful and hard to overcome.
- Guilt, the Caregiver's Unwelcome Companion
Feelings of guilt often pop up throughout the caregiving journey, even though they are usually undeserved. To make matters worse, guilt-trips are often self-imposed. Many feel that their position as a spouse, adult child or even a parent requires them to personally see to all of their loved one’s needs. Deserved or not, guilt is nearly always a useless and destructive emotion, yet it's a common problem for caregivers.
- An Unhealthy Sense of Competition
Adult children who are caring for their parents may still be trying to earn the place in their hearts as the one who did the most. Sibling rivalry, even in healthy families, seldom disappears completely. Many caregivers fight to get their family members to help but keep getting denied. For these people, sibling rivalry isn't the issue. 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 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.
- Stranger Danger
We 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 hired care. 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.
- Privacy Issues
Some people 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 with “outsiders.”
- Financial Woes
Our medical system still lacks sufficient features to keep people in their own homes with the assistance of paid help. 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 go on 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 care, but this can be detrimental in many other ways.
How Caregivers Can Accept Help
- Seek Objective Advice
We may need counseling from a trusted outside person, 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 Support from Your Peers
Although insight from an outsider is valuable, nobody understands the inner workings of a caregiver’s life like fellow caregivers. A caregiver support group, either in person or online, is an excellent resource for caregivers who are looking to connect with people in similar situations. The AgingCare Online Caregiver Forum is a great place to start gathering tips and information from others who have been in your shoes.
- Live in the Present
Ongoing 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, and looking back repeatedly will only cloud our judgement and prevent us from moving forward.
- Practice Acceptance
If you have requested help time and again, but siblings only give excuses and 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 care, do you really trust them to take on any of your responsibilities? It is up to us to accept the reality of the situation and look elsewhere for the help we need and deserve.
- Don't Fall Prey to Premature Judgments
While there are many hired caregivers who are simply average, there are also many of them who are incredibly in-tune with the seniors they care for. To prevent issues early on, do your homework before hiring a home care company or selecting a facility. Make your presence known without acting like you're an adversary. You and the professional caregivers are a 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.
- Find Ways to Maximize Monetary Resources
Financial issues will be ongoing until we have proper, widespread support for 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 help 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. 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 on how to move forward.
With or without help, you remain a caregiver. Even when a loved one is in a nursing home, the 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.