Beat Caregiver Burnout, Be Honest With Yourself and Others


One of the most popular discussion threads here, on, is called, "The Caregiver…How are YOU doing today?"

Created by Jam, one of our most active members, this discussion has entertained thousands of comments about one of caregiving's most troubling paradoxes: Does anyone ever really ask you how you're holding up as you try to take care of your elderly loved one?

And no, the casual acquaintance, who, upon asking, expects no further response beyond a rote, "Fine, thank you," wrapped in a falsely bright smile, doesn't count.

Far from making a caregiver feel connected to and supported by those around them, this exchange can be terribly isolating.

Most caregivers are rarely asked how they are doing by someone who is willing to hear the truthful answer. Even when someone really does want to know, unless they are a fellow caregiver, how could they possibly understand your pain and frustration?

The "Fine, thank you," mentality can even become so ingrained that a caregiver may stop asking themselves how they are doing.

Ceasing to have an honest inner dialogue can intensify a caregiver's feelings of isolation, putting them at great risk for burnout.

Cara Levine, Assistant Administrator of the Workmen's Circle MultiCare Center, a senior care facility in New York, says that most caregivers don't even realize they're burning out because they are so focused on caring for their loved one that they forget to check up on their own wellbeing.

According to Levine, the most effective way to avoid caregiver burnout is to start being honest—How ARE you doing today, really?

Know your needs

Caregivers are often counseled to make sure they take care of themselves. But for many, the statement: "If you don't take care of yourself, you won't be around to take care of them," is as unhelpful as it is true.

Research indicates that as many as 13% of caregivers die before their care recipients do. While the causes of death vary, the chronic stress associated with caregiving has been cited as a contributor to this statistic.

But, when your whole life revolves around caring for someone else, how do you begin to make yourself a priority?

Levine says that caregivers should start by taking stock of their situation, seeking specific sources of stress and how to neutralize them.

She says that caregivers should ask themselves certain questions in order to begin developing a care plan for themselves:

  1. How am I feeling today?
  2. What is it about my situation that is making me feel this way?
  3. What things are causing most of my stress?
  4. What things are stressful, but manageable?

Once you've discovered where your stress is coming from, you can figure out a plan of attack by asking yourself these questions:

  1. Knowing that I can only control myself and my outlook, what steps can I take to manage my stress levels?
  2. What do I have to do to get some time for myself?
  3. If I had the time what would I want to do with it? What do I enjoy doing?

"Everyone needs an outlet," Levine says, "the trick is to figure out what works best for you."

Whether you find solace in the synagogue, or enjoy basking in the bathtub, you need to find the time to do things that make you feel good.

For her part, Levine makes sure that she periodically takes some time away from the nursing home, where she works, to go see a silly movie. "Being a caregiver, sometimes you just need to get away and laugh," she says.

"Well, since you asked…"

Once you figure out what you need—remember to ask for it.

According to Levine, one of the hardest things for caregivers to do is to make their needs known and ask for help. "Sometimes you have to be willing to accept help," she declares.

People in your life who know that you're caring for an elderly loved one probably want to help, but they can't be expected to guess what you need—you need to be honest and tell them.

It can be something as simple as asking your neighbor to take care of your lawn while they're out mowing their own, or asking the handyman down the street to take a look at your leaking gutters.

Levine also laments that many caregivers seem determined to withhold the truth about how they are feeling from their loved ones, when, in some cases, expressing your emotions in a calm, productive way may help to make them more aware of how their behavior is affecting you.

(There's one caveat to this; if your loved one suffers from dementia, or is otherwise cognitively impaired, you're probably better off not telling them how you feel—sharing your feelings with a person who won't be able to understand or modify their behavior isn't productive.)

A caregiver obviously can't share all of their feelings with their neighbor or their loved one, so Levine says that support groups are a great way to connect, share, and vent with other caregivers.

Whether they're online or in-person, Levine feels that, in addition to a sense of community, support groups can help caregivers accept and gain a better level of understanding about their situation.

And you can be completely truthful without fear of judgment—after all, these men and women know exactly how you feel.

To tell (and accept) the truth

As a caregiver, you can't go it alone—and no one, who cares about you, expects you to.

The key is to be able to honestly identify your needs and accept the fact that you will have to rely on others to help you.

"When they recognize that they may have an issue or a problem, the intelligent person needs to know when to seek help," says Levine.

There will always be people who expect you to be "fine" no matter what you're going through.

But, the more honest you are—with yourself, as well as with the other people in your life—the more people you'll find who really do want to know how the caregiver is doing today.

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Being honest only got remarks from my sisters having to do with the fact we wanted Mother here so deal with it. Then we set boundaries that visitors had to be out by a certain time and no, I was not preparing a family meal every night for the visitors.

Yes, we wanted Mom here to recoup from a hospital stay; not forever. Been trying for 18 months to get her moved but something always comes up. Precious husband set a deadline and there will soon be a move. Mother is totally immobile, incontinent and can do nothing to help herself. After 2 years of 24/7 I look forward to getting my health and life back and to be a daughter not the help.
I had typed a nice long post and it went POOF! Ya gotta love computers!

Here goes another try. I will just say that I think eventually MOST caregivers are going to be dealing with a very ill and a very angry charge - someone who is depressed due to their losses and unable to deal with their anger and rage and so they take it out on the ONE person who is there for them - THE CAREGIVER!

I do believe it would take a SUPERMAN/WOMAN to deal with this day in and day out and not break down. It just plain wears you down to be WITH someone who is negative, depressed, belligerent, uncooperative, etc.

For me - the ONLY way I can handle this is to get away from it regularly. Sadly, these breaks didn't come soon enough. Eventually I had plenty of my own anger to deal with - a LOT of anger at the other siblings who were perfectly willing to 'sacrifice ME for their mother.'

Yes, screaming into a pillow or pounding on one helps temporarily and sure beats taking it out on a mailbox - but I can certainly understand how that can happen! Most of us can.

Sadly, for most - respite isn't a 'given.' IT COSTS MONEY - and often MORE money than one can afford - even when your sanity is at stake. But, somehow, you have to be able to get a break - the longer, the better.

The least a person should have at their disposal is a Lifeline necklace for the elderly person - and make sure you ask for the cheapest rate (we paid nearly $50 a month for 2 years before I told them I had found someone cheaper and then they miraculously said they could offer the service for $29 a month!!) So, ask for that $29 a month right off the bat and don't back down! That way, if your parent is well enough to at least push that button - you can leave the house for a few hours and know that help is just a push of a button away.

THEN schedule a long weekend and call on family and friends to step in. Tell them it is absolutely necessary and BEG - see if they will step up to the bat. (Make sure you can cancel your reservations without penalty - just in case begging doesn't work :0(

For us - the day care is just too expensive for what it is worth and a few hours doesn't help me that much. They want $100 a day - it does include meals and pick up/drop off - but that is quite a bit. They want $30 an hour for housecleaning. The same for a bath. So, I do the cleaning, she does her how bath - thankfully, she is strong enough for that and she has a nice walk in shower with heat, seat and rails and handheld shower

Thankfully, right now this minute - my MIL can bath herself. I don't HAVE to do ANY hands on caregiving. I know that could change at any time - all it will take is a health crisis - which she has regularly.

But, for now, I clean for her when she goes to the doctor or church. I make meals and my husband takes them to her. I fill her med boxes and she is able to take the meds (most of the time - she forgets a couple times a week). For now - and as long as her health holds - my caregiving is done at arms length. I have very little if any personal interaction with her - my husband deals with that.

I know this may change if her health fails or if she is hospitalized (which happens once or twice a year). But, for now, I don't have to see the dirty looks or hear the snide remarks and it has done wonders for my emotional well being.

I am also blessed with kids who will step in and help with their grandma from time to time and Church friends who do the same. We save them for a real break once or twice a year. One friend does meet my MIL at the foot doctor and escort her in/out every 12 weeks. My hubby takes her to her other more 'personal' doctor appointments. So, far - this arrangement it working.

I say DO WHATEVER NEEDS TO BE DONE to prevent yourself from having a stroke. Thankfully, my doctor finally told me WHAT I was dealing with here. That my MIL is unable to handle her anger and rage at all of her losses - and her losses are staggering - as they are for MOST elderly, sick people. She was taking everything out on me - and then denying it (she still does this).

We need to be honest with ourselves and know our limits - and even though I know that my MIL may not be thinking clearly - it doesn't change what she has done to me emotionally and physically and I knew I had to put a STOP to it. My doctor said she has 'chosen' me as her target. So, I guess you could say I am the 'chosen one.' :0)

She is still in complete and total denial - thinks that 'I am not dealing with things very well.' :0)

I feel that NO ONE HAS THE RIGHT to abuse another person - whether you are old and sick or not. I know that there are situations when an older person is not responsible for their behavior (as with dementia/ALZ) - but that is NOT the case with my MIL. She does NOT have any form of dementia. The doc says it is just plain anger!

I am just grateful that my doctor finally told me what exactly is making her this way and he also told us we need to 'remove her from our home.' That is not possible - so we have 'separated' - or at least I have. She can no longer just walk into our home and say or do as she pleases.

So, if all you can do is put a lock on your bedroom door - do that. Have a place of refuge - keep it neat and clean and pleasant. Buy flowers and keep them on your dresser or a houseplant you can care for and talk to :0). Play your favorite music. Light a nice candle (watch it though :0) Read. Do this for yourself!! Buy a box of Calgon and use it! Put yourself higher up on the list. Pray for a better day. It will come.
I think if we are all honest - most of us harbor 'some anger' at being so responsible for another person - especially if they are incapable of giving anything back. I get positive feedback from my husband and kids but negative feedback from my MIL.

Even though I know in my heart that she cannot help growing old and possibly cannot even help her lousy attitude - but it is wearing me down just the same. And when she is having a bad spell - and sometimes those last a a while - I feel trapped and angry.

The fact that her other children do not help in ANY way and show no consideration for their mother or myself (the caregiver) makes me angry as well.

We have to find an outlet for this because it is unhealthy. So, I take walks, I force myself to do this for my own benefit. It helps to clear the head and it is good for my body. Anger is a negative emotion. We need to do things for ourselves - be proactive - make time for a good book, a walk, a long shower, a phone call to a friend, a movie, a meal out with friends. We HAVE to have something to look forward to or we become just like our parent - negative. It will eat us up. Don't let that happen. MAKE yourself to what is good for you. Eat well. Take vitamins. Take care of yourself - no one else will.

Looks like there are a few of us who are unable to sleep this morning. :0) Take care all of you. Don't lose hope.

When I say that I do my caregiving from a distance, I mean that I limit as much as possible my 'alone time' with my MIL. Do what you can to accomplish this if needed.