Why Caregivers Refuse Help

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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.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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82 Comments

The title of this article really drew my attention.
I am a 63 year old widow with my MIL (88, alzheimers) living with me. My own mother (widow age 89) lives 4 miles away.

I refuse help for privacy issues.

My house feels like grand central station as my MIL's visitors are now my visitors. She doesn't carry on conversations and so they talk to me. And talk and talk.
"Helpers" are still visitors to me. They want to talk while helping and/or talk when they arrive and leave. Honestly, I'm just spent. I don't want any more visitors. They drain me. There is pressure to clean the house all the time to prepare for "helpers."
I also don't like the whole world traipsing around my house when I'm not there. No one else on this site seems to have that problem but it is real for me.
Do you feel as I do............that your home & bathroom have become a sort of public facility these days?
I refused help when it was self-serving to the giver and would have resulted in more work or breaking something that was fixed. It is critically important for caregivers NOT to accept help that will make things more difficult or worse in the long run. I think it's ... mostly as simple as that. If the outcome and the journey were really good more caregivers would accept it. They are always the ones left to clean up the "well meaning" messes.
Carol,

Some of my comments shouldn't have been directed just to you, but to the poster who said " With all due respect to devoted caregivers, I have noticed that sometimes they are the "self-appointed martyrs" in the family and believe that they must, for whatever reason, sacrifice themselves completely on the alter of caregiving".

Needs to be put in check.

First off my caregiving days are over. But I highly resent comments that think people who are sole caregivers do it so they're called martyrs.....PLEASE.

When you have siblings who will not help, I used to love when someone would tell me that I had to tell my brother he needed to help, well maybe if I put a gun to his head...LOL., even then I wouldn't bet on it.

One poster mentioned how neighbors offered to take her mother out to dinner, that was 4 yrs ago, still waiting on dinner.

We had a lady next door who every time I talked to her "if you ever need anything let me know", well when I had my mom in one hospital having two surgeries at once 40 miles away, than my dad started having chest pains and was to be admitted to the local hospital, I asked her for help. She did help once but you could tell she really didn't want to.....so much for "if you ever need anything let me know"......LOL.

So when I see nonsense on here about people refusing help or wanting to do everything on their own......PLEASE....if I could have gone to a lab and had myself cloned I would have to get some help.

And yes I tried paid help when my mom came home after surgery and the home health that Medicaid provides for a few weeks stopped. Hired a young woman at $18 an hour, nice girl, but not very reliable. She showed up sick once, than her kid was sick, or she would be running late. So much for hired help.

The reasons it all falls on one person is many times only one adult child(usually the single one and usually a woman) does it because they don't have kids. Than the other siblings make excuses or just flat out refuse to help.

Even in you hire help and can afford it, good luck finding people who are both honest and reliable. A good friend of mine was driven crazy trying to find two people to take care of her mother while she worked. They went through several people before finding these two.

My point is the "martyr" caregivers are few and far between, the sole caregivers who can't even get a sibling to take over for a week are the majority.

Let's remember that.

Thank you.