A recent study concluded that caregivers of vulnerable people may die four to eight years earlier than they would have had they not taken on a long-term caregiving role.'s An often exhausting and isolating role, caregivers frequently feel stressed and are at high risk for becoming burned out and depressed. Yet many caregivers, even when they have access to safe options for help—still come up with excuses to put off (or actively refuse) assistance. Those whom have not been in similar positions may ask "Why would they do that?" Here are a few reasons Carol Bradley Burdock Author of "Minding our Elders", encountered over the years:
The instinct to protect: While we may come to terms with the fact that we can't make our loved one well, we still want to be the person to provide care and protection. It's a protective instinct that's hard to overcome.
Guilt, the caregiver's unwelcome companion: Sometimes guilt can enter the picture—though it's often not recognized and most of the time is undeserved. We may feel that we could have done something to prevent what has made our loved one so vulnerable. We may feel that our position as a spouse, adult child or even a parent requires us to personally provide all of the care needed. Deserved or not, guilt is nearly always a useless (and sometimes destructive) emotion, yet it's a common problem for caregivers.
An unhealthy sense of competition: We may—especially in the case of adult children caring for their parents—still be trying to earn our place in their hearts as the one who did the most. Sibling rivalry, even in healthy families, seldom completely disappears. Before all of you caregivers who fight to get family help and keep getting denied gang up on me, I want to be clear that I recognize that the bulk of elder care providing, even in large families, frequently falls to one person—most often a daughter. For these people, sibling rivalry isn't the issue. They'd give an arm and a leg to get any help at all from siblings or at least to keep the siblings from criticizing their caregiving methods while offering no constructive assistance. However, there are caregivers who shut out other family members. Most likely, they subconsciously want to be the family hero. I've heard from enough shut-out family members to know that this touchy subject does need to be addressed.
Stranger danger: We don't trust hired caregivers, whether they are providing in-home, assisted living, skilled nursing or any other kind of care. We've heard horror stories and may even personally know people who have had terrible experiences with hired care. This makes us afraid of what may happen if we are not present to monitor our loved one's care at all times.
Financial woes: We fear financial problems. Our medical system still lacks many safety net features such as Medicare or Medicaid coverage to help keep people in their own homes with the assistance of paid help. Medicare and Medicaid proponents want to see this change and there are now some programs in place in some areas where it's possible to get this kind of paid help. The Program of All-inclusive Care for the Elderly (PACE) is one such project. Unfortunately, not all states are signed on for this kind of help, and even within states this assistance can be spotty. 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 this care may not be what we'd have chosen for them. None of this is smooth, easy or entirely satisfactory, but we have to work with what we have.
How can we change this reluctance to accept help?
Seek support and counsel: We may need counseling from a clergy member or a paid counselor to help us understand that we should not expect ourselves 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, negative for the care receiver. Caregivers need to be at least occasionally refreshed in body and mind before they can provide the best ongoing care long-term. A caregiver support group either in person or online (such as the Caregiver Forum on AgingCare.com) is a good start and something to continue using. Speaking to someone who has experienced caregiving can provide a release and unexpected support. If you're stuck, you may want to also seek some professional counseling to help yourself move forward.
Make peace with the past, live in the present: Nothing can undo what is done. That's why ongoing guilt—even if you feel it's earned—is useless. It's better to work positively with what is now reality than to wallow in the past about what might have been. If your spouse ate a diet of sweets while he was diabetic, it is not your fault. You likely made suggestions and helped in any way possible but we can't live other's lives for them. No matter how much you love him, nothing changes that reality.
Accept what is: Take the help when it is offered; adult children, sibling, friends, even adult grandchildren can provide relief. If they won't help, no matter how much you've tried to convince them that help is needed and wanted, then you have little choice but to become the decision maker. Hiring help may be your only option. Don't push yourself to the breaking point, it is worse for you and the care recipient. It ends up doing the exact opposite of what you are trying to accomplish.
Don't fall prey to premature judgments: While there are many hired caregivers who are simply average, there are also many of them who become incredibly in-tune with their care receivers. Yes, there are horror stories. Do your homework before hiring an outside caregiver or using a facility. Once you've hired some help, make your presence known without acting like you're an adversary. You and the hired caregivers are a team. Eventually, if you've found a good fit, you can relax and benefit having them take on more of the physical care so that you are free to spend quality time with your loved one.
Find ways to maximize monetary resources: Financial issues will be ongoing until we have programs that can help people no matter where they live. We can and should pressure law makers to do more to help caregivers, but that won't change much for those who are now in the trenches. Seeking help from an elder law attorney can be wise. He or she can 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 help is a good first step towards ensuring that you can have at least some kind of a life apart from the constant needs of your care receiver.
Convincing yourself that your loved one may also benefit from a variety of caregivers could be your biggest challenge.